When Diabetes Drugs Go Wrong

Pamela Jessen writes about a severe side effect she suffered from a diabetes drug.

I have been living with Diabetes Type 2 for over 8 years now, after being diagnosed in 2010 by my family doctor, Karen Badenhorst, while living in Calgary, Alberta, Canada. I had been going for regular blood work because of chronic pain issues I have, including Fibromyalgia and osteoarthritis,  and she was concerned about some of the numbers she was seeing.

Dr. Badenhorst decided to test my A1C numbers – the numbers that average out your blood sugars over a 3 month period of time. She did this for a full year for me and when we discussed this, I was appalled to discover that my number came to 7.8%. The normal range should be between 4.5-6%.

Some of the symptoms of having a high A1C include:

• Being very thirsty and tired
• Blurry vision
• Losing weight fast
• Urinating frequently

Very high blood sugar may make you feel:

• Nauseated or cause you to throw up
• Dizzy or faint
• Lose too much fluid from your body (sweating)

Dr. Badenhorst decided to put me on Metformin, a “firstline” drug for Diabetics who are going to be managing their illness with diet, exercise and now medication. I did that for about a year at a fairly low dose of 500 mg three times daily, and then we increased the dosage to 850 mg three times a day for the next couple of years with no problems. My blood sugars looked better, the A1C numbers came down to a respectable 6.3% and I was left feeling pretty confident we were on the right track.

The Story Begins

In September 2013, my husband and I decided to move to Victoria, BC from Calgary, AB. The winters in Calgary were starting to really affect my health and we knew that Victoria was a place we’d always wanted to live. We went without a job for Ray to come to – we just prayed and trusted that God would provide. We rented an apartment sight unseen in the Vic West area of the city, and rented out our townhouse in Calgary. And then, with a leap of faith…we headed West with our cat, to adventures unknown! Upon arriving in Victoria, our apartment turned out to be just fine and Ray was working within a month of our being there. We explored, went shopping, bought necessities, explored some more and got to know our home town.

I discovered a fabulous group for volunteering in the Fall of 2013, called Patient Voices Network. It’s a place where ordinary people can have a say in how Health Care can be changed in BC through volunteers acting as Patient Partners. When a Health Care partner needs the voice of a Patient Advocate for an engagement they are involved in, they can reach out to us to find the appropriate person(s). I’ve been active in numerous endeavours so far and was pleased that my health was staying fairly stable so I could enjoy it!

Unfortunately, in early 2014, my A1C numbers started to change to the higher range again, and my new doctor on the Island, Dr. Gary Leong, and I had a discussion about what the next steps were. He suggested that there were other drugs we could try and we decided on one called Januvia. It was newer on the market and so I started to take it with the hope my numbers would come down again to an acceptable level.

A Trip to the Emergency Room

One night, towards the very end of February, I wasn’t feeling well. I had started to develop some chest pain, much like the pain I’d felt before my gallbladder had been removed. It was a crushing sensation in my chest and going through to my back, only this time, I was feeling pain in my jaw as well. Normally, I’m pretty stoic about chest pain, because I’ve had experience with Costochondroitis, which is inflammation around the rib cage, so I tend to ignore chest pain as being anything too serious. This time though I was starting to get a bit worried. I was laying on the floor on my back with a Magic Bag on my sternum area, hoping the heat would relax any spasms, but relief was not to come. Meanwhile, my husband Ray was on the internet looking up heart attack signs in women. He comes back with a print out and says, “I’m taking you to the Emergency Room”.

I of course started protesting, but not all that effectively, because I was definitely getting scared. The pain was getting stronger, not subsiding, so in the end, I agreed to go. We got in the car (in hindsight, we should have called an ambulance), and off we went with him calm and strong, and me starting to panic. Of course, it was in the wee hours of the morning, but it was a weeknight so the ER was quite empty when we got there. The triage nurse called me forward right away and as soon as I mentioned the chest and jaw pain, they had me moved into a bed within 5 minutes of registering.

A Serious Problem

A bad reaction to a diabetes drug can be severe chest pain.Before I even knew what was happening, they were wheeling in an EKG machine and putting little monitors all over me so they could get a reading of my heart. It turned out my heart was just fine, but my chest pain was through the roof now. The nurse Jeff came in; we talked and I told him what was going on. He gave me a dose of nitroglycerin under my tongue and I started laughing because I couldn’t lift my tongue up for him…I was so confused on what he wanted me to do. I finally got it right, but even after 3 doses of nitroglycerin, nothing happened and the pain still sat there, crushing me. My jaw was aching terribly, as well as the area underneath, and I felt like I wanted to throw up. I told Jeff this, but I also told him I am not physically able to vomit, because of a stomach surgery I’ve had in the past called a Nissen Fundoplication. This led to me needing an NG tube placed down my nose and into my stomach to empty my stomach contents. I’ve had them done before – they’re not pleasant but I know how to swallow to get them down, so Jeff prepared everything and then started the procedure. He brought me water to drink to help with swallowing and at one point, I had to get him to stop for a moment, but it was over in no time. I immediately started to feel better as my stomach emptied, but my chest was still aching and we were no closer to getting answers.

Jeff started an IV and the ER doctor ordered Fentanyl for me, as I’m allergic to Morphine. We talked about all my medical issues, what meds I took, and the fact I just started the Januvia, which was the only thing that was new. The ER doctor wanted a CT scan to make sure there was no Aortic Rupture happening, so that was quickly scheduled. Then the Gastroenterologist came to see me and said he wanted to see if my Fundoplication was causing the problem so he wanted to do an Endoscopy. This was big time serious stuff happening and I can’t believe that I was considering just laying on the floor at home with a Magic Bag, thinking it would just pass!

A Reaction to a Diabetes Medication

I ended up back in the ER room after having all these tests done (and with the NG tube finally removed) with less chest pain, but no answers as to what caused it. My Fundoplication looked good and there was no sign of an aortic rupture, so the only conclusion the doctors came to is that I suffered a severe allergic reaction to the Januvia, which lists chest pain as one of it’s serious side effects. I was admitted to the hospital for 2 more days altogether so my system had time to just rest on liquids and stomach relaxers as well as muscle relaxers. Gradually, FINALLY, the pain in the chest and jaw went away.

There was something else that came from this hospital visit too. Because of the CT scan that was done, the Hospitalist (the Doctor on call for the Hospital) discovered that I have another health condition that I didn’t even know about – something called D.I.S.H. which stands for Diffuse Idiopathic Skeletal Hyperostosis. It’s a type of bone spur that is growing on my Thoracic Spine, but instead of being a normal spur, this type looks like melted candle wax dripping down the spine instead. It explains the back pain and stiffness I’ve felt in my middle back for such a long time that I’ve just put down to arthritis. Now I know it’s a completely separate condition – and just another one that causes me pain. Oh joy!

DiabetesI went home after 3 days in hospital and now have Januvia listed on my Medic Alert bracelet as an allergy. It amazes me how this simple Diabetes drug could have had such a devastating impact on my body, when the Metformin did nothing like that at all. It goes to show how different classes of medications can be so different when they’re all designed to do the same thing…lower blood sugar. After this incident, Dr. Leong and I decided we’d go right to insulin and so now, I inject 14 units of long acting insulin every night before bed. I’m not afraid of needles, so doing my injections isn’t a problem for me. I don’t enjoy it, but it’s necessary, so I just do it, the same way I test my blood. It’s part of what having Diabetes is all about.

A Pill Can Make You Ill

If you ever feel ill or “different” after starting a new medication, whether it’s for Diabetes or something else, please be aware that serious side effects can and do happen. Keep an open mind that this could be the case for you and talk to your doctor or go the ER closest to you if you have any concerns about what you’re experiencing. I’m not sure what might have happened if I’d just stayed home, but I am sure it wouldn’t have been pleasant. Trust your instincts – medications can cause serious harm even when taken correctly.

Remember – A pill CAN make you ill. Be smart and get medical attention when something doesn’t feel right. I’m glad I did.

About the Author:

Pamela Jessen writes about a reaction to a medication for type 2 diabetes.Pamela Jessen lives in Langford, BC, just outside of Victoria. She is happily married to her amazing husband Ray and they are proud parents of two grown kids and three wonderful grandsons. Pamela is formerly employed as an Administrative Specialist and is a Certified Event Planner. With her career behind her and now being on Long Term Disability, Pamela is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness. Her blog is called There Is Always Hope. She is currently a Moderator for a blogging group on Facebook called Sharing Inspiring Promoting Bloggers.

How Many Steps Does It Take a Chargie to Move House?

Moving into a care home can be a challenge.

I was safe, secure, and happy in my little ground flat; me and my little lady. Ok, life wasn’t the best or greatest but who can ever say theirs is?

Ok, rewind: the year 2018 had been declared the worst year ever and it was only March.

We won’t go into the bad bits that had already happened. “Why cry over spilt milk?”  is very much a motto of mine and whenever I can I smile, laugh and carry on. Don’t get me wrong; I can scream at myself and this figure in the sky, whoever He be, asking, “Why, why me?” But then it’s carry on because screaming at the sky just doesn’t do anything.

To Move or Not to Move?

So in April 2018, I was a victim of anti-social behaviour. I knew then that I could never feel or be safe in my little flat again. I WhatsApp’d a group of ladies from my church who were supposed to look after me. All they said was, “It’s just kids messing around, go back to sleep.” But thankfully I have a group of the most wonderful friends, even though none of us have ever met, who came online and offered me hugs, prayers, and comfort, staying with me wanting to know what was happening and if I was ok. Who are these totally amazing friends who I swear I now couldn’t get by without? It’s you who are reading this: The Unchargeables.

So my mind told me if I moved, I was only moving once more, not twice. But here we hit the big issue that seemed immovable to everyone but me. My age. Never in my life has my age suddenly become such an issue.

Oops, no, rewind. When I was little, we as a family lived in the States. Because of when my birthday was, it meant I couldn’t start school for another whole year. All because I was born 7 days after the deadline. So my dad being my dad, who always believed he could overcome anything and beat the system, doctored a birth certificate so it looked like I’d been born 7 days earlier. Of course he was very proud of himself and told everyone we knew. It did briefly cross my mind that this was wrong, but I didn’t want him gloating again. Plus I think everyone knows my age anyway.

On to step 30…or is it 300?

So what to do? The anti-social behaviour was still ongoing. My next idea was to contact my MP and ask him to help me. With the help of a Sheltered housing officer, who was the kindest and most lovely lady, she determined to get me housed. There were several false starts, which I won’t go through or this really will be long and you’ll be entering me for my English A level exam!

I was eventually told that I had a flat at an extra care facility, or care home, where you have your own flat inside a building with one entrance, but you then have your own lockable front door and don’t need to let anyone in unless you want too. House carers provide care that your care assessment says you need. Plus a lunchtime meal; the lunchtime meal will be very important to me as on my care assessment it states I am at risk of malnutrition.

So there’s the end of the blog, you think! No, no, we haven’t reached step 300 yet! If only it had gone that smoothly it would have been so much better. But as the saying goes, “If it’s going to happen, it’ll happen to Judi!!” It used to only be my friends that said it but now after all the mess ups of actually getting me into my new flat, even my carers are saying it. Hmm…I somehow think I have a reputation following me.

When I arrived on my holiday, Marion said as I entered the reception area, “Oh no, here comes trouble!” But me, I’d much rather be recognized that way than to have people’s hearts sink when they see me or find my name on a list. I like the fact that people feel they can relax and have a laugh with me. I don’t like people even professionals being aloof from me.

The Next Hurdle to Get to the Care Home

There can be many obstacles to get into a care home.So we over came the age issue, but the next hurdle was the funding issue. Most people in the UK who have care are funded by Social Services. However, I’m funded by the NHS because I have at least one primary health condition that causes me several different problems. One of them is severe distress and worsening mental health issues so that I can’t cope with the illness. But anyhow we won’t go down that track. Many of us, if not all of us, have that; I just saw in the newspaper that I would be funded that way and went for it.

But the issue was that they usually only fund in your own home or a care home where you only have a bedroom. I was trying to get the point over that I don’t need to be in a care home yet. Can you imagine me in a care home? I’d have them all up at midnight doing the conga round the care home, those who could walk pushing those who couldn’t. I just love that picture. Maybe I should have gone and given them a bit of life instead of just sat in the day room. But once they got past the “This is not my home and I have to leave it”, they put the funding through.

BUT………I couldn’t leave without one final hiccup. My wallpaper wasn’t at the post office to be picked up so my decorator could put it on my bedroom walls.

BUT………also leaving with one plus a lady has given me an electric bed for free and my removal man has agreed to go and pick it up before Saturday so I can have it.

So you see, in the end life is a case of throwing a dice; sometimes the numbers are good and sometimes they’re not, but in the end it all works out. Well, that’s what I feel.

About the Author:

Judi talks about moving into a care home on The Unchargeables.Judi lives in Cambridge, UK. She was fit and healthy until late 2013. Her main diagnosis is Sjogren’s, but she has several serious illnesses on top of that. Her main philosophy in life is to keep smiling and keep going. Crying in a corner isn’t going to change the outcome.

10 Ways to Beat Boredom When You’re Bedbound

Ten Ways to Beat Boredom When You’re Bedbound

When you tell a healthy person that you’re bedbound, a common reaction is, “I bet you’re really up-to-date on TV and movies!” And I did spend a lot of time early in my illness catching up on the years’ worth of programming I had missed while I was busy establishing my career. However, it turns out there is a limit to how long you can binge watch shows before you feel like turning the TV off permanently.

Fortunately, there are a lot of other interesting and fun things you can do to occupy your time without leaving your bed. I’ve been mostly bedbound for about 9 months now due to ME/CFS, POTS, and EDS, and housebound for more than a year and a half. Surprisingly, I very seldomly experience boredom. My entertainment options are limited more by my fatigue than by what’s accessible to me from my bed. Here are a few ideas to help you stave off boredom, whether you’re bedbound for a few days or many years.

1. Audiobooks

Listening to audiobooks is a great way to reduce boredom when bedbound.I’ve loved reading for as long as I can remember, so it was frustrating when my illness caused cognitive impairment that made it very difficult to comprehend written text. But then I discovered audiobooks. I found out that my local library has thousands of audiobooks available to download, and I immediately began devouring book after book. Exploring new worlds and making new friends in my favorite characters helped me feel less lonely and depressed. Even now, a year and a half later, this remains my primary form of entertainment to stave off boredom.

The library is a great place to start if you’ve never tried audiobooks before, but there are many other resources too. You can get an Audible subscription, buy audiobooks on iTunes or the Kindle store, or download public domain books narrated by volunteers for free at Librivox.

2. Skywatching

Recently, while I was at the back door to let my dog outside, something in the night sky grabbed my attention. There was a very bright orange dot next to the moon. Guessing that it might be Mars, I pulled out my phone to look it up. The website EarthSky confirmed that I had indeed spotted our neighboring planet, and if I turned around and looked to the southwest, I should be able to see Venus and Jupiter too. And sure enough, there they were!

I’ve always appreciated a beautiful full moon and twinkling stars, but I never put much effort into actually identifying and learning about them. Since that chance sighting of Mars, though, I have a newfound interest in what’s happening in the sky, and it’s amazing how much you can see through your bedroom window.

If you don’t have easy access to a window, the app Sky Guide has you covered – simply tilt your mobile device toward your ceiling and it provides an interactive view of what’s in the sky above you right now. (Available for iOS.)

3. Watch wildlife and nature out your window

You don’t have to live in a forest to appreciate nature from your bed. As a suburbanite, I’m not likely to see many coyotes or bears in my backyard, but there is plenty of activity out there to keep me from boredom. Hummingbirds zoom in and out of the yard, rabbits leave footprints in the snow as they dart from one shrub to another, and goldfinches hang upside down from sunflower heads to get to the seeds.

If nature won’t come to your window, though, there are still ways to appreciate it. To encourage visitors, try setting up birdfeeders near your window. Or why not go on a virtual nature hike on YouTube? There are even online groups that cater to nature lovers who can’t get into the great outdoors due to illness or injury.

4. Nurture something living

I know, you’re probably thinking, “Isn’t this supposed to be for people who are bedbound? I can’t take care of a pet!” And you’re right, many pets do take a lot of time, attention, and energy to care for. But some require very little maintenance and are inexpensive. Consider getting a pet goldfish, hermit crab, gecko, small bird, mouse or hamster, or a praying mantis or other insect. This may require a little help from a caregiver to clean their cage regularly, so be sure to do your research before buying a new critter.

Having a plant “companion” can help stave off boredom when you’re bedbound.You can also treat a plant as a pet, taking care to water it and feed it just the right amount, trimming away dead leaves, and yes, even talking to it. Building a terrarium can offer hours of entertainment and keep boredom at bay as you carefully select and place the different plants and decorate it with pretty rocks, gnomes, or tiny fairy houses.

Being responsible for the wellbeing of a living thing can provide companionship, entertainment, and make you feel important and useful during a time when you’re not able to care for all of your own needs.

5. Express yourself

Laying in bed for an extended period gives you time to reflect. It makes you more aware of your surroundings, and of what’s going on inside you. You may start to feel like your thoughts, feelings, wishes, fears, and questions about life are getting bottled up, so why not give them an outlet?

The options for expressing yourself are almost endless. Do you like writing? Try keeping a journal, starting a blog, or writing poetry or even a novel. If photography is more your thing, you may enjoy capturing mundane things around you in new ways and from different perspectives. Or if you prefer to make videos, you could make a documentary about your life in bed, interview a friend or family member, or make your own YouTube channel. You can turn your feelings and experiences into artwork by drawing, painting, or sculpting with air dry clay. Let your creative juices flow!

6. Learn something new

Learning a new skill can help stave off boredom when you’re bedbound.Have you ever wanted to learn how to knit, speak Spanish, or play an instrument, but could never find the time for it? Well, now’s your chance!

YouTube has no end of videos explaining how to do just about anything you could imagine, and there are thousands of TED Talks that cover fascinating topics you’ve probably never even thought of before. (If that sounds daunting, you might want to start with “The Most Popular Talks of All Time”. On Craftsy, you can watch step-by-step guides on sewing, quilting, embroidery, and many other types of crafts. And what could be more satisfying than taking a college class without having to worry about exams? Check out free online courses that can be found on sites such as Coursera, Udemy, and edX.

Now you can amaze your friends with all your diverse knowledge!

7. Train your brain

Another great way to keep your mind sharp and ease boredom is by playing puzzles. Do a crossword or word search, solve a few sudoku grids, or break out a deck of cards for some solitaire. There are also tons of brain training games available online, such as Lumosity or Elevate.

Remember, though, that mental exertion can be just as taxing as physical exertion for many Chargies, so be sure to give your brain frequent rests.

8. Volunteer

After I made the difficult decision to stop working, I felt like I had very little to contribute to the world. I wasn’t making any money to support myself, I couldn’t leave my house, and I was too fatigued to even have visitors. I was just sort of existing.

Volunteering from home can help stave off boredom when you’re bedbound.But then an opportunity arose to volunteer my time in a way that worked with my limited energy levels. A local church had recently started an online ministry, and after I had been attending for a while, the pastor asked if I would like to serve as an online chat host during the services. I accepted, and immediately felt a sense of belonging and purpose. Now, over a year later, I still love logging in to the service from the comfort of my bed every Sunday morning. I feel like I’m contributing to something that matters, and I’ve made a lot of new friends.

Most places that need volunteers are thrilled when someone offers even a couple hours of their time here and there, and they’ll often find a way for you to help that works for you. To find a volunteering opportunity that’s right for you, ask around at your favorite nonprofit organizations or advocacy groups for chronic illnesses, or check out Volunteer Match.

9. Go on a virtual vacation

You may not be able to leave your bed, but you can still plan your dream vacation. Just pick your destination and off you go! Think about what time of year to go; a warm sunny beach in February while snow piles up at my house sounds good to me! Research the sights you want to see while you’re there, and which restaurants can’t be missed. Use Google Earth to explore the world in 3D. Watch travel videos about your destination, and use your library’s online catalogue to check out books about the local customs and culture.

The best part is that planning a trip is completely free, so go crazy and pick the fanciest suite at that 5-star hotel!

10. Pamper yourself

Chances are, if you’re bedbound, you’re probably not taking a lot of bubbles baths, and going to the salon is definitely out of the question. But there are still ways to make yourself feel pampered without leaving your bed.

Shop online for new super cozy pajamas and socks, or splurge on some high thread count bed linens and a fuzzy blanket. To create your own spa experience, ask a friend or caregiver to bring you a basin of warm water with Epsom salts mixed in so you can soak your hands and feet. Follow that up with a pumice stone, ultra-moisturizing lotion, and some nail polish to make the mani-pedi complete. Then give yourself a luxurious facial with warm towels, a soothing facial mask, and nourishing serum and moisturizer.

Little self-care treats like these often go by the wayside when you have major health concerns, but you may be surprised by how much a few minutes of TLC can help you feel relaxed and comforted.

Have you tried any of these activities? What other things do you like to do when leaving your bed is not an option?

About the Author:

Molly writes about ways to beat boredom when bedbound on The Unchargeables.Molly Rice is an instructional designer, college instructor, and former pharmacy technician who is currently bedbound and unable to work due to chronic illness. She is active in her church’s online ministry and several chronic illness support groups. She enjoys listening to audiobooks, sitting outside on sunny days, and cuddling with her dogs. Molly has ME/CFS, POTS, and EDS.

Dysautonomia and Achieving a Better Quality of Life Through Exercise

Gentle exercise can help symptoms of Dysautonomia.

Did you know that regular exercise can actually improve the symptoms and quality of life for POTS patients more effectively than a beta blocker? While doctors often reach for the prescription pad to cure our healthcare issues, diet and exercise are often key players in health issues, and dysautonomia is no exception. For many, a combination of medications, along with changes in diet and exercise is the answer to achieving their best health with the many conditions that fall under the dysautonomia umbrella. Exercise is an integral part of that equation. I didn’t see significant improvement in my own Postural Orthostatic Tachycardia Syndrome (POTS) until I began to incorporate exercise into my daily routine.

The Supporting Evidence

When beta blockers were compared to exercise over a three month trial, it was found that while both decreased heart rate, the medication did little to make patients feel any better, while exercise impacted the overall quality of life for patients. “The exercise worked better than the medicine to restore upright blood circulation, improve kidney function and quality of life, all problems in POTS, the researchers say (Exercise).”

Of course one doesn’t just start doing jumping jacks or running track with dysautonomia. The first thing you want to do is speak with your doctor and get cleared for exercise. Your doctor can also help you choose a healthy target heart rate and ranges for cardio exercise. It may also be a good idea to work with a physical therapist to help you decide what level of exercise to begin with and what’s safest for you. Dysautonomia International suggests that some patients may even benefit from a cardiac rehabilitation program.

Modifying Exercise for Dysautonomia

How much energy we expend can be just as important as the type of exercise. In fact, exercise intolerance in dysautonomia is very real and many of its accompanying primary or comorbid conditions like MCAS or ME/CFS. Exercise intolerance means that an increase in activity can cause an increase in symptoms for an illness, most notably fatigue levels. Where the confusion comes in with this concept is that people assume that any exercise becomes problematic for someone with these conditions and that’s simply not true. What it does mean is that we have a lower threshold of tolerance than healthy people and we need to modify how we exercise.

Simple yoga poses can be beneficial exercise for individuals with dysautonomia.For people with dysautonomia, this means avoiding exercise in an upright posture along with monitoring how much energy we expend. The first part of this equation is pretty easy to understand; we want to partake in exercise that can be done from a sitting or laying down position, such as recumbent biking, rowing, or swimming for our cardio. If we lift, we want to do so in a sitting position. Things like dance classes and barre should probably be eschewed for spin class, pilates, and yoga, while still avoiding certain positions. It’s all about being safe and not giving our intolerance to standing the opportunity to rear its ugly head.

Pacing for exercise intolerance is a bit trickier. No one can tell you where that wall is for you and the best thing is not to find it, but to strenuously avoid finding it, as it can take several days to recover from triggering your exercise intolerance. We all know what it is, because it’s that feeling that usually makes us say “Oh no! I think I overdid it!” as we feel the state of our health crumble like a cheap facade. But how to avoid it?

8 Tips for Pacing Yourself

  1. Forget the no pain no gain bull. That’s not for spoonies.
  2. Count exercise in your spoons. Your exercise is part of your health care and necessary to staying/becoming healthier. It should come first, but if you have something else to do in a day that’s going to take more spoons than you have, exchange it with your exercise to avoid triggering your intolerance.
  3. Start out at the appropriate level of exercise. Avoid straining your muscles. You DO NOT need to strain your muscles to build them.
  4. Do an appropriate number of reps. Even if it’s only 1 set of 10 or 3 sets of 5, you’re still getting the work in. Good for you!
  5. If you wake up already fatigued, hydrate and supplement with salt. Take a break or decrease the number of reps if rehydration doesn’t help.
  6. Keep in mind that upright exercise will always cost you more spoons, so if you exchange your 3 mile recumbent bike ride for a trip to a park to walk 2 miles, the walk to the park is going to cost more spoons.
  7. Keep a journal of your exercise to ensure you’re gradually increasing your exercise and offering yourself enough challenge without regularly triggering your exercise intolerance.
  8. Try not to take breaks longer than 1-2 days. Decrease workouts rather than cut them completely to avoid losing ground.

Since I was bedridden when I started out, I had to start out very slowly, using simple exercises that can be done in bed. I wasn’t just fighting exercise intolerance, I was fighting serious muscle deconditioning, which can contribute to the severity of dysautonomia and the level of exercise intolerance you may experience. The last thing you want to do when starting a new exercise program is trigger exercise intolerance. You want to start out gently, doing exercises you’re confident you can do at a number you’re sure won’t make you sore or wear you out.

Find a Physicial Therapist to Help You

While I did this rehabilitation alone, it is probably better to go through an approved therapy program that’s arranged by the doctor caring for your dysautonomia. You really need someone who can direct your practice and ensure you’re not only performing exercise that’s safe for your condition(s), but also appropriate for your starting level of fitness to avoid any injury. While I’ve always been a bit of a do-it-yourselfer, I say this because ultimately I ended up in therapy later, attempting to correct all the weakness that remained because I was either not doing exercise to target those specific areas or I was doing them incorrectly and hurt myself. I could have saved myself months of pain and hassle had I just gone and requested the therapy in the first place.

Recumbent exercises can be helpful for people with Dysautonomia.It may be frustrating to start out so slow and you may be bored, but don’t worry. You’ll be amazed with how quickly your stamina increases and soon you’ll be able to take on more. The great thing about working within our own limitations is that those limitations become less constraining quite quickly. Before you know it, 10 minutes will become 15, 15 will become 20 and before you know it, you’ll be devoting a whole hour to ninety minutes a day exercising. Even if you can only last 5 minutes to start, you’re getting somewhere. But you can only get somewhere if you keep going.

No matter what level you’re starting at, it may be possible to work your way up to unmodified, upright exercise. This can be largely dependent on comorbid factors, but dysautonomia is not an incurable condition for everyone and while well controlled, some of us with it can lead almost normal lives, which includes normal exercise. For example, by the end of the previously mentioned study on exercise versus beta blockers, 10 participants could no longer be diagnosed with POTS at the end of the three month trial (Exercise).

Every Patient is Different

Careful exercise can help manage Dysautonomia.As someone with POTS as a secondary diagnosis to EDS and MCAS, I may always rely largely on my recumbent stationary bike for my cardio. However, I’m also able to incorporate occasional upright exercise as well, such as walking at parks, stair climbing, and light aerobic exercise. Not too shabby for a former occasional wheelchair user. Actually, it’s been over a year since I’ve pulled my wheelchair out for any reason, even attending museums, festivals, concerts, sporting events, malls and parks with nothing but my own two legs to carry me.

Like many, I use a combination of meds, exercise and diet to manage my dysautonomia. I enjoy fewer symptoms, greater stability of health and more freedom overall because I’m no longer worried about passing out in public every time I leave the house. Finally, exercise is a great way to feel more in control of my illnesses and in touch with my own body again.

About the Author:

Capricious Lestrange explains the benefits of exercise in managing dysautonomia.Capricious Lestrange is a former educator who loves to write. When brain fog prevented her from writing the fiction and poetry she loves, she turned to blogging and now writes about her life, her health conditions and what she does to keep them in check. She enjoys spending time with her loving husband, her adorable Russian Blue kitty and dabbling in the visual arts when she doesn’t have her nose stuck in a book. Capricious has EDS, MCAS, POTS, CPTSD, and gastroparesis.

Could Chronic Pain Be Causing Your Friendship to Suffer?

Chronic pain may make it difficult to maintain a friendship.

I have lived with chronic pain for well over a decade, and it never ceases to amaze me how many ways this pain continually affects my life. Not only does it take a physical toll on my body day in and day out, it affects me emotionally and mentally. As I learn to cope with it, I find ways that work and those that do not work. And, as I unfortunately discovered, it can – and will – destroy a friendship if the wrong way is chosen to cope with it. This is what I’ve learned about chronic pain as the third wheel in a friendship. Hopefully by sharing my experience, it will help you to avoid making the same mistake.

Bubble of Solitude

Chronic pain can make it difficult to maintain a friendship.Whenever my body is having a higher than usual level of pain and it starts to become overwhelmingly stressful to handle, I withdraw into this tiny, little bubble that is a party of one – me. This solitude is just that – solitude. I’m not aware of doing it either. My body switches to survival mode as if the pain is too great to process, and my mind goes into full shutdown. It was a coping technique developed during the first several years of living with chronic pain, and I admit it’s not the greatest way to deal with pain, but one nonetheless.

During this isolation, I have many feelings swirling around inside: feeling ashamed and embarrassed by my condition, the sadness of the inability to live a ‘normal’ life free of pain, scared of being judged, being rejected, lack of understanding, and many more. A part of me is also fighting depression whether I recognize it or not. Like I said, it is easier to process it all when it’s just me. And if I’m going to be fully transparent – I sometimes sit in the safety of my closet free from light and sound. Again, not the best coping technique.

The Effects of Isolation on Loved Ones

It’s only after I come back and join the world of the living that my husband would tell me how isolated I was. He would tell me how the isolation affected him as well as our kids, and how it made him feel when I would push them away. I didn’t realize how hurtful that exclusion was on them. I was so busy dealing with my own feelings that I failed to consider theirs.

Chronic pain can make us isolate ourselves from friendship.It has been nearly five years since I’ve had a period of isolation, and I have found myself doing it again. And this time it has had serious repercussions. Just as in times past, my eyes were opened to how my choice of coping with pain affects others. How my habits of isolation can hurt and wound friendships. Intentional or not – the results are the same.

When I’m isolating myself, I’m assuming my friends won’t understand my plight. I’m also assuming I know how they will react, what they will think, or what they will say. I’m not giving them a chance to show me how they feel and how they will react. In a way, I’m putting words into their mouths when they’ve had no chance to speak. How is that fair? It’s not.

When someone speaks for me, it is irritating. However, I am speaking for my friends when I refuse to reach out to them for help. Essentially, I am cutting off their help before they are able to even offer. I might as well say to them, “No, you cannot help me because I do not want your help. You are unable to help me, and therefore you are not needed.”

Don’t Be a Hypocrite – Give Your Friend a Chance

In a way, I am a hypocrite by encouraging others to ask for help and yet I cannot do the same. In my mind, I’m the only one who is experiencing this pain and suffering. This is not true and I’ve said as much many times before now. There is always someone experiencing what you’re experiencing in some way, or will experience, or have experienced it. If I don’t open up to a friend about it, how can I find out if they, too, have experienced it?

By not connecting and voicing my pain to a friend, I am not giving them a chance to share their thoughts, feelings, and possible similar experiences. When I’m not connecting, I’m leaving the other person to their own conclusions about my silence. What are they to think about me not communicating? They may think they’ve done something wrong or that I don’t want to be friends any more. They could assume I don’t value our friendship. Who could blame them? This is especially true when the isolation lasts for extended periods of time.

Instead of Isolating, Do This…

Instead of isolating myself and not communicating my pain, I could tell them about the tendency to withdraw. It could be a simple, “I am in pain. And when I’m in pain like this, I have a tendency to withdraw and isolate myself from others. It’s not anything you’ve done and I will try my best to keep an open line of communication during those times.” That is a lot better than silence. Silence can turn unintentional actions into hurtful ones.

I’m quick to empathize and understand the lives of those with an invisible illness, but I don’t give that same care and attention to those not living with it. Why should I treat them so differently? Do I not fight for a ‘healthy’ person to have compassion and consideration for the chronically ill? It’s as though I’m saying the only ones capable of empathy and compassion are those with invisible illnesses. And that is simply not true.

What if I didn’t have chronic pain and fibromyalgia? Would I have the same level of empathy, understanding, and concern as I do now? I would like to say yes, but I honestly do not know. I’ve been living this way for so long, I can’t remember a life without it much less what I thought of others living with it.

Choose How Pain Will Affect Our Loved Ones

Chronic pain could be causing your friendship to suffer.You see, for me, pain has a way of creeping in and consuming, cloaking me with a veil of distrust, and skewing my outlook. I’m seeing the world through a distorted lens, and assuming I know what others will think of my illness. I refuse to wear that cloak of assumption and doubt any longer.

We may not have a choice of living with chronic pain, but we can choose how we allow that pain to affect us and our loved ones. I choose a new way of coping with pain and it includes communicating more with my friends. It will include reaching out more for help and sharing my feelings. It will feel as though I’m opening the door to vulnerability, but the possibility of enriching a friendship is worth so much more.

A Letter to My Friend

As a way to cope with the pain I have unintentionally inflicted on my friends, I have written a letter to those friends. This will not, by any means, replace the hurt I have caused. My sincerest apologies to each of you.

Dear Friend,

Lately, I have been withdrawn from you and our friendship. Calls, text messages, and visits seem to be occurring less often than they once did, and I’m sure this is leaving you with lots of unanswered questions. You may even have concluded that I no longer wish to be friends. Or you may feel as though you have done something to offend or anger me. I understand why you may feel this way, and I want you to know you have done nothing of the kind.

As you know, I live with chronic pain and fibromyalgia. I have shared some of the symptoms of living with this condition, but I have not told you the extent of it or just how bad it can get. It has been several years since experiencing pain of this magnitude and I have forgotten how it feels. It has affected me greatly, and one of the ways I cope with it is why I have become withdrawn.

Years ago, I developed a bad habit of isolating myself when the pain is unusually high for an extended period of time. The isolation is a way for me to process the pain and all the confusing feelings I experience during these times. Yes, I have some depression with it, but there is so much more that comes along, too. So much more, that I am unable to express these feelings as they are happening.

The mere thought of interacting with others while struggling with the pain and emotions leaves me feeling scared, vulnerable, and lost. I have fears of being misunderstood, rejected, or criticized. Often times, the weight of it all is suffocating and I sometimes feel I am unable to move on with life. Solitude seems less vulnerable, in its own way.

I wanted to give my sincerest apologies for not voicing this when it all started. All the times you reached out to ask about my health should have been answered with more transparency and honesty. Many times I wanted to tell you just how low I was feeling and how much the pain was hurting, but I remained silent. All the while, my silence was hurting our friendship. I’m so sorry.

By choosing silence, I unknowingly robbed you of the chance to offer help. Worse, I assumed you were incapable of understanding my circumstance. How selfish of me. How selfish of me to think you are unable to console, empathize, or have compassion for what I was experiencing. Can you forgive me?

I do value our friendship, and I do value you. My actions, or lack of actions in this case, have said otherwise, I know. There is nothing I can do to take back the hurt I’ve caused you. I can only change my behavior during these times moving forward. So….

I make a promise to you and us, I will try my best to reach out to you when I’m having these periods of isolation. I will let you know when I’m having a heightened sense of pain and swirl of emotions too complicated to process. I will invite you into my bubble of solitude while transforming my loneliness into openness. And while I cannot promise you I will be able to convey those emotions I’m dealing with, I do promise to cry on your shoulder, if you’re still willing to let me. I’ll even bring my own tissues.

I am sorry for not being as good a friend to you as you have so many times been to me. I am sorry for judging you, rejecting you, and turning my back on you. I hope you are willing to continue our friendship, and give me a chance to be a better friend to you. I hope you are willing to stand with me in my fight to get well again, and give me some of the strength that I have lost.

Your loving friend,


About the Author:

Brandi writes about how chronic illness may cause your friendships to suffer.Brandi is a wife to an amazingly supportive husband, mom to five sweet, crazy kiddos, and a fibromyalgia thriver. As a Navy veteran living in South Carolina, she spends her days cherishing the time with her family as well as reading, writing, cooking, and just being Brandi. Her blog, Being Fibro Mom, is all about thriving the family life while living with fibromyalgia, and the support group, Fibro Parenting, gives additional support and resources to fibro parents. Brandi’s other work in the fibro community include writing for The Fibromyalgia Magazine, hosting a live show about fibromyalgia, and serving as Families & Fibromyalgia program director for the International Support Fibromyalgia Network.

Pain Awareness Month: Why Does It Matter?

Learn about chronic pain during Pain Awareness Month at The Unchargeables.

When the editors at The Unchargeables asked for someone to do an article on pain for Pain Awareness Month, which is recognized during the month of September, I jumped at the chance. Pain is something I am a living expert on and I thought I’d have no trouble at all writing an article all about it. Then, somewhat ironically, a flare up of my Rheumatoid Arthritis (RA) set in and the very thing I was supposed to be writing about caused huge writer’s block and left me too exhausted to put fingers to keys.

“Show People What It’s Really Like”

The past three weeks I’ve been so unwell that I’ve barely left the house, which means nothing very exciting has happened. This stumped me because while I wanted the article I wrote on pain to be informative and raise awareness, I had also hoped to keep it relatively positive. In my writing about life with chronic illness, I aim to instill hope and keep a positive focus; so being stuck in bed, not feeling very positive and with not a lot to say, I wondered what on earth I should write about. I spoke to my brother about this frustration and I had to laugh when he responded with, “Rachel, it’s ‘Pain Awareness Month’, not ‘talk crap’ month. Show people what it’s really like”.

Learn about chronic pain during Pain Awareness Month at The Unchargeables.He was right; this month is to raise awareness. Anyone already living with a chronic illness likely knows what living with pain is like. The purpose of this month is to show people who don’t know what it is really like and raise awareness by doing so. The purpose of this month isn’t to say, “Life is hard with pain, but it’s all sunshine and roses really.” That just isn’t true. So, as I write this from bed, with splints on both wrists, dosed up on painkillers, trying not to be infuriated that every position I sit in is so uncomfortable I wish someone would just knock me out, I’m going to share with you what my life can be like behind the doors I normally choose to close.

Trying to Be Positive About Pain

I’m a pretty positive person; I refuse to believe life is bad just because I got ill. I try not to let my illness stop me from being me and doing the things I love with the people I love. You’re more likely to see photos of me on social media out having fun than curled up in bed.

The thing is, I do spend a lot of time unable to do things I love. In fact, I even spend a lot of time unable to do things I don’t love like housework, washing and food shopping. One fun thing, or even one stupid day-to-day task can leave me bed bound. Pain and fatigue go hand in hand and being in pain all the time is absolutely exhausting. When pain takes over I hide from the world, not because I’m ashamed, but because who is interested in seeing or hearing about that? The reality is, people would probably be a lot more understanding if they did see and hear about that side of it. Being super positive all the time is not a bad thing, but when raising awareness, we have to share what living with pain is really like, not some Instagram-filtered version of it.

Imagine Living with Pain Every Single Day

I live with pain every single day. That is hard to comprehend unless you do, too. Before RA I couldn’t ever have imagined what this was like. Take a second and just imagine how your life would be impacted if you were in pain every single day, constantly.

There is no cure. You now have to live with pain all the time and you have to continue to function and live your life. Some days you may have pain levels of two or three out of ten on the pain scale; some days you will have pain that is a ten. Those are the days you will scream, cry and desperately long for something to make it stop.

The other days of moderate pain you must function as usual. Imagine how that would have changed the day you had today? Would you have showered? Would you have applied makeup? Would you have gone to work or called in sick? Would you have cooked tea? Tidied or cleaned the house? Picked the kids up from school? Done the shopping? People living with chronic pain must keep going and have to do all these things. Imagine how exhausting and difficult that would be.

Learn about what chronic pain is like during Pain Awareness Month at The Unchargeables.Now imagine the ten out of ten pain days. How would you feel if you were unable to get dressed or clean your teeth? How would you feel if you couldn’t get out of bed or leave your house? Would you want to eat? Or would you want to curl up and sleep? You’ll be exhausted, but on days like this you will not be able to sleep. You will be in too much pain to stand a chance of sleep; welcome to painsomnia.

Now imagine a few months go by of this daily pain. How tidy and clean is your house? How many sick days have you had? How many social events have you missed? How many times have you eaten takeaway instead of a cooked meal? How many days have you managed to shower or get dressed? How many people have grown frustrated with you? How many friends have stopped calling to check on you? How many times has someone questioned if it’s really that bad or asked if you’re “better” yet? You can’t get better, there is no cure. How do you feel about the future now? How do you feel about facing a life of pain knowing how much it’s already changed your life in a few short months?

The Reality of Living with Pain

This is the reality of living with pain, and it isn’t pretty. The last three weeks I have managed to shower an average of every three days. I used to shower daily. I’ve worn makeup twice. I used to wear it daily. I’ve had to choose between preparing lunch or walking the dog, unable to do both. I’ve had to choose between brushing my teeth or brushing my hair, between changing the bed or changing my pyjamas. I’ve had to sit down to shower, I’ve had to lie down on the sofa after simply walking down the stairs, I’ve had to take a nap between getting dressed and getting a coffee.

Learn about chronic pain during Pain Awareness Month at The Unchargeables.The two days I managed to get dressed and apply makeup, to anyone else I looked perfectly normal. This is part of the problem, and this is why awareness matters. You cannot see pain, but people living with it need your understanding and compassion.

When Pain Causes Judgement

I recently went shopping with a good friend, who pushed me in my wheelchair because getting ready to go out had left me too exhausted and in pain to walk. While waiting for her to arrive at the shops a man walked past my car, parked in a disabled spot and glared at me. He literally glared at me the entire time he walked around my car. It was obvious he wasn’t sure I should be in that spot, even with my badge on display…and a wheelchair in the boot.

Makeup hides a lot, but it didn’t hide the tears that came from his judgement. Every day people living with pain encounter judgement and discrimination and that isn’t okay. You cannot see if someone has a disability or chronic illness by simply looking at them; they aren’t always visible. A comment of judgement, or even frustration, from someone who doesn’t know what it’s like to live with chronic pain can do so much damage. We need to be a little kinder to each other and show compassion.

Adapt and Try to Be Positive

The thing about pain is that you can manage it, but even with the best medicine, treatments and therapies in the world, there isn’t a cure for most chronic illnesses or the pain that accompanies them. You learn to adapt and live with it, and you don’t let it stop you living the best life you possibly can, but it does change your life. I refuse to be beaten by it and I refuse to dwell in the darkness that clouds me on the worst days. I have moments where I’m overtaken by negative thoughts and a sense of hopelessness, but I have learned how to pull myself out of that. I remain positive and focus on the good in each day, even if the good is that I simply survived that day.

However, being positive doesn’t mean reality should be hidden and to raise awareness we have to get real. You can share the reality of pain without letting a negative attitude consume you. I encourage you to speak to people about what it’s like to live with pain, and be real with them, whilst also keeping a positive attitude. Hopefully it will start some really important conversations and make for a future where people are a little kinder to each other.

Reach Out

Learn about chronic pain during Pain Awareness Month at The Unchargeables.If you know someone who lives with pain, I encourage you to ask them about it; you may open a door for them to be honest with someone for the first time. Sharing helps, and it certainly alleviates the loneliness that can often come with a chronic illness.

If you are living with pain, then please know you are an absolute warrior, a champion and you are so much stronger than you realise. Don’t be afraid to share your story and don’t be afraid to admit when things are rough. You deserve support, love and compassion. I know some days it can feel hopeless, and I know some days it can feel like you’ve lost everything, but please know you aren’t alone and everything you are is more than enough. If anyone tells you otherwise, it is their issue, not yours. Keep going, keep fighting and keep shining a light during Pain Awareness Month, and beyond.

About the Author:

Rachel writes about Pain Awareness Month at The Unchargeables.Rachel is a 29-year-old Chronic Illness blogger at whatapain.co.uk, living in the North of England. She was diagnosed with Rheumatoid Arthritis in 2015. Passionate about challenging stereotypes and disability discrimination, she is married to an awesome bearded bloke and owner of a super weird rescue dog called Blue.

Top 10 Netflix Shows About Chronic Illness (3500 Words)

Read about Netflix shows featuring chronic illness on The Unchargeables.

Chronic illness isn’t a topic that seems to heavily feature in television shows and movies. At least, that was what I thought before I started research for this article. It turns out there are shows, movies and documentaries out there featuring chronic illness, and I was keen to see how accurately it was represented in a world of fairy tale endings and happily-ever-afters. I was reassured to find that there are some shows that don’t shy away from the hard-hitting reality of life with chronic illness. This article specifically focuses on Netflix shows and these are my thoughts on the ones I watched, including:

  • Alexa and Katie
  • Brain on Fire
  • Unrest
  • The Fundamentals of Caring
  • Kiss and Cry
  • Degrassi: Next Class
  • Gaga: Five Foot Two
  • My Beautiful Broken Brain
  • Atypical
  • Be Here Now


Alexa and Katie

Alexa and Katie is an American teen series following the lives of Alexa, who has been diagnosed with cancer, and her best friend Katie. Season one premiered on Netflix in March 2018 and the show has been renewed for a second season. Given that this was a teen show, set in an American high school, I was dubious about what the show could offer someone in their late twenties like myself. However, I did find myself enjoying it.

Read about how Netflix show Alexa and Katie features chronic illness on The Unchargeables.

The humour is questionable at times, but it did have some laugh-out-loud moments and the underlying message was beautiful. It focuses on the struggles of living with illness as a young person and how the support of a friend can be life-changing in that situation. Alexa hides her illness for fear of being treated differently, something which I think all of us can relate to on some level. The show follows her struggle to live a ‘normal’ life whilst also taking care of her health. This is something else I think is very relatable to everyone with a chronic illness.

The show is a clichéd American teen show, but the underlying message is fantastic, and the positivity shown by Alexa is commendable. There are some hard-hitting moments when your heart breaks to watch Alexa miss out on life because of her illness; however, the show is mostly humorous, so it doesn’t dig too deep into the more difficult side of chronic illness. I will be interested to see what happens in season two and much to my own surprise, I will be keeping an eye out for its premiere. If you want something easy to watch which keeps things light hearted, whilst not shying away from some of the difficulties presented by living with a chronic illness as a young person, then give this a go.

Brain on Fire

Of all the shows recommended by Chargies and the Unchargeables team to watch for this article, I was dreading this one the most. I watched the trailer for this film when it first came onto Netflix in June 2018 and decided it would be too close to home, too hard to watch. My husband watched the film while away on holiday earlier in the year and he said it hit very close to home for him and it wouldn’t be easy for me to watch. It was therefore added to my ‘do not watch’ list because I didn’t think I could face it. However, I am so glad I had to watch this as part of my research for this article.

Brain on Fire is based on the true story of Susannah Cahalan, who released her memoir Brain on Fire: My Month of Madness in 2012. The film follows Susannah, an up and coming journalist working in her dream job, living her ‘best life’ in New York. Seemingly from nowhere, Susannah develops an array of symptoms such as voices in her head, seizure, and hypersensitivity to sound. The film follows her story as she desperately tries to find a cause for her symptoms.

Read about how Netflix show Brain on Fire features chronic illness on The Unchargeables.

The struggle to have doctors take her seriously, let alone obtain an accurate diagnosis, is heartbreakingly relatable for so many of us with chronic illness. Susannah is misdiagnosed, told her symptoms are all in her head, and is written off by almost every medical professional she meets. Her symptoms deteriorate, and her family and boyfriend keep desperately fighting for answers. This film was difficult to watch because it is a reminder that medicine still has a long way to go and too many medical professionals still fail to investigate symptoms when there is no obvious cause for them. It was incredibly emotional to watch Susannah be told it was ‘all in her head’ and become a shell of her former happy, healthy self.

The film also tackles issues such as how difficult chronic illness can be for loved ones and how the support of loved ones can shine a light even in total despair. It also looks at how employers deal with chronic illness, although Susannah was fortunate to have an understanding employer who supported her.

This true story shows that all it takes is one doctor to change a life, even if all others doubt you. This is an issue which I am sure will strike close to home for many people with chronic illness and I advise you have tissues on hand to watch this film. Susannah eventually does find answers when she is diagnosed with a rare autoimmune disease, anti-NMDA Receptor Encephalitis. Finally, she goes on to rebuild her life. She has since been involved in raising awareness of the condition, which was previously misdiagnosed in 90% of cases, according to information shared at the end of the film.

The film highlights the importance of sharing your story, no matter what that story may be. It is also a reminder that even after the diagnosis of a chronic illness, you are still you, just a stronger version of you. The film is hard-hitting. At points I genuinely sobbed, but it is also a story of hope, love and strength which I think anyone with a chronic illness will strongly relate to.


Unrest is a documentary following PhD student Jennifer Brea as she battles Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (M.E). Jennifer started documenting her life to cope with her diagnosis and the debilitating symptoms of her illness.

Read about how Netflix show Unrest features chronic illness on The Unchargeables.

Jennifer fell very ill shortly after getting married and the documentary accurately depicts the struggle of a newly married couple coming to terms with a life-altering diagnosis and all that comes with that. It is extremely relatable to those of us with a chronic illness and tackles the grief, loss and heart break that come with losing your health. It is a stark reminder that life, and health, are extremely fragile and should not be taken for granted.

The documentary discusses the harm of misdiagnosis and the controversial opinion of many medical professionals that M.E/CFS is psychological rather than physical. Jennifer campaigns to bring more awareness to the illness and in doing so speaks with people from all over the globe who are also battling the condition. She does this via Skype and video interviews as she is bed bound for a large portion of time during filming.

The documentary does not shy away from sensitive topics such as suicidal thoughts, whether to have children, and the loss of her quality of life and the future she had hoped for. It also tackles the issue of females being less likely to be believed by medical professionals or not taken seriously due to the hysteria phenomenon. It accurately reflects chronic fatigue and the impact chronic illness has on a marriage or relationship. The documentary also shows the terrifying attitude some countries have towards illnesses that cannot be seen, such as M.E. It features the story of Karina, a young woman removed from her home by authorities in Denmark and effectively held captive for over three years in a psychiatric facility. It also features people living all over the world, which makes it extremely relatable to everyone, regardless of where you live. The documentary is honest, emotional and inspiring, featuring people from all walks of life as they fight to shine a light on an illness seemingly forgotten by medicine.

The Fundamentals of Caring

I had seen this film before and loved it, but I watched it again to refresh before writing this article. I would highly recommend this film. It is emotional, real, quirky and extremely funny.

Read about how Netflix show The Fundamentals of Caring features chronic illness on The Unchargeables.

This American comedy-drama is based on a novel written by Jonathon Evision and premiered on Netflix in June 2016. It features Paul Rudd as a retired writer who is struggling with personal tragedy. He becomes a caregiver and his first job is providing care to a teenage boy who has Duchenne Muscular Dystrophy. The film follows their journey as a friendship blossoms and they both encourage each other to start living life again, rather than watching it pass them by. The teen boy is played by Craig Roberts, who brings a fantastic element of truly British humour into the mix. The film highlights issues such as feeling entitled to good health, wanting to live a normal life, and the feelings of fear and grief chronic illness can evoke. The film reminds us all to not let disability define who you are and never give up on your dreams. It is laugh-out-loud funny, motivational, hard-hitting at times and wonderfully uplifting at others.

Kiss and Cry

This film is based on the true story of Carley Allison, a 17-year-old figure skater and singer, who is diagnosed with an extremely rare type of Sarcoma. It shows how life can change dramatically in a short space of time. According to her own family, who supported the making of the film, it depicts what cancer actually looks like, and not some Hollywood version of cancer.

Read about how Netflix show Kiss and Cry features chronic illness on The Unchargeables.

The style of the film, where at points the actress playing Carley speaks directly to the camera, makes it very personal. It follows Carley’s journey as she comes to terms with her diagnosis and finds the positive even in such a horrific situation. The story also shows how her family, friends and boyfriend supported her, and tackles delicate issues such as friends who struggle to cope and therefore stop contact, pushing people away and wondering why a partner chooses to stay when you are very ill. It also shows Carley trying to protect others from the reality of her illness and faking a smile at times. Furthermore, it examines how relationships with health care professionals can be difficult and reminds us that behind every doctor and nurse is a human being with their own lives, issues and emotions.

Ultimately, Carley’s motto was to ‘always smile’ and the message within the film is beautiful, heartfelt, and very relatable. Carley leaves her mark on the world and reminds us all to do the same, even when life doesn’t go how you planned. The film is very real, down-to-earth and inspiring.

Degrassi: Next Class

This Canadian teen drama made its debut on Netflix in January 2016 and is comprised of four seasons. This was the show that took the most time to watch because all four seasons were available on Netflix and I couldn’t stop once I’d started.

This was another show I wasn’t sure I’d find very relatable because it is a teen drama and therefore focuses on teenage issues, but I was blown away by the range of issues this drama tackled. I genuinely wish teen shows had been this refreshingly honest back in my own teenage days. The show tackles issues such as abuse, drug use, sex, friendship, relationships, homophobia, racism, mental illness, sexuality, and religion.

Read about how Netflix show Degrassi: Next Class features chronic illness on The Unchargeables.

It also follows the life of character Grace as she comes to terms with a diagnosis of Cystic Fibrosis. Grace hides her diagnosis from her friends in the first season because she doesn’t want pity or to see them struggle to deal with it. In the second episode of season one we see one friend find out the truth and the show does an excellent job of accurately representing how others can struggle to cope with a serious diagnosis. It shows her friend Zoe refusing to believe the illness will eventually kill Grace; Zoe looks for crazy ‘cures’ rather than simply listening to Grace and being there for her. I found this very relatable, and I am sure many people with a chronic illness will too. It is often other people who struggle to come to terms with our diagnosis more than us, and this can hinder our own acceptance of it and the grieving process which is part of all chronic illnesses.

The show does not shy away from the issues of death, life expectancy with the disease, and everything that comes with that. It shows Grace as she moves between acceptance, grief, anger, and hopelessness before finally realising she deserves to live a full life, no matter how short. It also tackles the issue of transplants and the various therapies she must do, as well as how she deals with wearing medical equipment at school once her disease progresses.

The show also follows the character Maya as she struggles with her mental health and suicidal thoughts. It shows how depression and anxiety impact every aspect of her life, the challenges of reaching out for help, the stereotypes and stigma still attached to mental health and ultimately how she tackles those.

Trigger warnings: There are scenes of death and suicide attempts, so please bear this in mind as it may be triggering for some. There are also scenes of a severe car accident, which again may be triggering for some.

Overall, I found the show enjoyable, hard-hitting and unafraid to tackle difficult topics. I pretty much binge-watched this because I got so sucked into the storylines!

Gaga: Five Foot Two

In this 2017 documentary, we are introduced to the world of Lady Gaga. I’ve always enjoyed her music and I was interested to learn more about her, particularly her experience living with Fibromyalgia.

The documentary follows Gaga as she makes her fifth album, Joanne, and the lead up to her half-time performance at the 2017 Super Bowl. It is not solely focused on her battle with Fibromyalgia, but it does feature numerous times in the documentary.

Read about how Netflix show Gaga: Five Foot Two features chronic illness on The Unchargeables.

When I first sat down to watch this, I was unsure if I would be able to relate to Lady Gaga in any way. Despite liking her music, we lead completely different lives and I cannot imagine having anything in common with an international superstar. When I started watching the documentary, it seemed to confirm this; I didn’t find Gaga very relatable and if anything found her difficult to watch. However, as the documentary unfolded it was refreshing to see Gaga on a human level: relaxed, no façade and discussing issues which are incredibly difficult to open up about, including mental health, loneliness and chronic pain.

At one point, we see Gaga crying in agony in her apartment due to a flare of her fibro. It is heart-wrenching to watch such a strong woman be crippled by pain, and this is extremely relatable. In that moment, living lives that are different in a million ways becomes insignificant and you can relate to Gaga on such a personal level. You can see the pain written all over her face and body and anyone who suffers with chronic pain knows how she is feeling in that moment. Lady Gaga shows an admirable level of compassion when she acknowledges her privilege to be able to afford a team of people to help her manage her condition and treat her pain.

This documentary highlights that someone can appear totally okay and be functioning as normal, but still be in an incredible amount of pain. Hopefully this documentary is educational for people who do not suffer with chronic pain, as Gaga uses her platform to effectively raise awareness of a still very misunderstood health condition.

My Beautiful Broken Brain

My Beautiful Broken Brain shares the story of Lotje Sodderland, a 34-year-old woman living in London who suffered a Haemorrhagic Stroke as a result of Congenital Vascular Malformation. The documentary follows her journey as she rebuilds her life after her acquired brain injury. As part of her brain injury, she loses her ability to speak, read, and write, among other things, and must learn all those skills again. We witness her journey from the point of her stroke, through inpatient rehabilitation and beyond.

Read about how Netflix show My Beautiful Broken Brain features chronic illness on The Unchargeables.

The documentary focuses on her trials and triumphs, the unconditional support of her family and friends, and her fierce determination to recover. It highlights that everything can change in a moment, and accurately chronicles the challenges which surround invisible conditions. It is a raw, emotional, honest account of the every day frustrations of living with a complex health condition. The documentary doesn’t shy away from the realities of Lotje’s life post-stroke and she bravely shares the heartbreaking sense of loss anyone with a chronic illness can relate to.

The documentary was aired on Netflix in March 2016 and shows Lotje going through experimental treatment and the post-stroke complications which follow. It is the story of a woman who must rediscover her identity and learn to live with her ‘new’ brain. It is at times heartbreaking, but it is ultimately an inspiring and hope filled journey which is very relatable to anyone who has had to overcome health challenges and rediscover who they are after a chronic illness diagnosis.


Atypical is an American coming-of-age comedy-drama which premiered on Netflix in August 2017. The show focuses on the life of Sam, an 18-year-old with autism, and explores topics such as relationships, sex, friendship and the challenges Sam experiences as he attempts to get a girlfriend and navigate high school.

Read about how Netflix show Atypical features autism on The Unchargeables.

I can’t speak from experience as to whether this series accurately depicts life with autism. However, I found it insightful and a chance to view the world through different eyes. At the same time, I am aware that the show divided opinion when it premiered and I can understand both sides. It has been said that the show is very stereotypical which was largely unnecessary. I can understand the frustration of this because autism is a spectrum disorder and does not present the same way in everyone. Personal experience with family and friends has introduced me to people at various points on the spectrum and I would be frustrated if someone stereotyped them based on a narrow view of what autism is. However, I felt this show should be included on the list as it is refreshing to see Autism portrayed in the mainstream media and I believe it could help start important conversations about the condition. The other point made by some is that it would be impossible to accurately represent everyone on the spectrum in one character because by its very nature, autism presents differently in every individual it effects.

One of the things I thought was particularly positive about Atypical was it showed Sam in steady employment. I am passionate about ending disability discrimination in the workplace and know it is common place, so it was refreshing to see someone with a disability being positively represented in the work environment. The show also shows how a family unit learns to navigate the ever-changing challenges presented by disability, and how despite the difficulties they often face, Sam and his family have a close, supportive, loving relationship.

On the flip side there were some scenes which troubled me, including some showing how Sam coped with different situations and the behaviour of his mother’s character. I think it is important to remember when watching this show that it represents one person and their experience in a dramatized way.

Overall though I found the show humorous, informative and really exciting because it is fairly unique in that its main character has autism and the whole show is focused around how he views and navigates the world.

Be Here Now

This documentary follows actor Andy Whitfield on his journey to live life to the full with Non-Hodgkin‘s Lymphoma. It made its Netflix debut in 2015 and is a story of unwavering love between Andy, his wife, and their children as they fight to beat his cancer.

The documentary looks at both western medicine and alternative medicine and covers both in some depth. It reminds us that treatment is a personal choice and we must advocate for ourselves. It also explores the psychological impact of cancer and the allows a glimpse into some of the most personal, private moments of their grief.

Andy and his wife are beautiful to watch; their dynamic is remarkable. The documentary highlights the strength of their love, the resilience of their marriage, and their never-ending hope of a happy ending. We see them cling to each other through the storms life brings and navigate each challenge, setback, and triumph in a wholly united way.

It was an emotional watch; you cannot help but be pulled into their world and cry with them. What was truly beautiful about this documentary was how they turned the worst situation imaginable, losing a loved one, into a positive, learning journey. They remind viewers to count every blessing in life, no matter how small, and to always be present in every moment.

About the Author:

Rachel writes about top shows on Netflix featuring chronic illness.Rachel is a 29-year-old Chronic Illness blogger at whatapain.co.uk, living in the North of England. She was diagnosed with Rheumatoid Arthritis in 2015. Passionate about challenging stereotypes and disability discrimination, she is married to an awesome bearded bloke and owner of a super weird rescue dog called Blue.

5 Ways Dance Has Helped Me Cope with Chronic Illness

Read about how dance can help you cope with chronic illness on The Unchargeables!

When you’re chronically ill, it’s often hard to keep up with hobbies that you once were able to do. Thankfully, one of my hobbies I’ve been able to keep up with, albeit at a slower pace, actually helps me cope. I try to be very realistic when it comes to chronic illness. I know that I need to protect my body and treat it well, but you also need to take comfort in things you love, so I try to find that happy balance. I know there are many people, especially with my condition, hypermobile Ehlers-Danlos Syndrome (hEDS), that were or are a dancer and have benefitted greatly from it and equally have had a lot of issues from it, which I have too. I’d love to share some of the ways that dance, in particular ballroom and Latin, has helped me.

1. Family and Social Aspects of Dance

Dance can provide a community to help cope with chronic illness.One of the big ways in which dance has helped me is not necessarily dance itself in the physical sense, but the community behind it. I’ve been at my dance school since the age of 9 (I’m now 25) so I’ve really grown up with it. I feel like my teachers and people I have met there are all part of my little dance family. Even if I didn’t get to dance or one day am unable to dance at all, just meeting up with people that share the same passions is really rewarding. I now go to a children’s class and an adult class once a week and really look forward to that time to meet and talk to people. I really enjoy seeing others progress too, especially some of the children who I’ve known since they were very young. It’s so lovely to see them succeed and find their own little family.

At University I was also part of a dance team. Other than that I didn’t have many friends there, so my dance friends really were a major part of uni life. A lot of them were also there for me when I was really struggling in my final year, as that was when a lot of my pain and issues started. It is a support system that’s really beneficial, especially now that I’m chronically ill.

2. The part dance played in my diagnosis

TW for weight issues/eating disorder type content.

This is a tricky one, but in a way dance did help me to be diagnosed. I’d had the odd issue in my teens like headaches, anxiety, and then some GI issues in my later teens, but nothing much that would have pointed in the direction of EDS. When I was 19, I had some issues with anxiety that impacted my physical health and eating habits and also therefore caused weight loss. A lot of my fatigue started after that, but I improved a little bit after a few months at home.

In the next year I was working abroad as part of my university degree and unfortunately didn’t dance whilst I was there. At the time it didn’t really bother me. But when I got home and started my final year of university, it really started to get difficult and I was in a lot of pain. So much so that I actually failed my last year due to feeling so ill. That prompted me to look into what was wrong. After seeing a rheumatologist, they recognised my symptoms as EDS and I had my diagnosis. Looking back, I realised that maybe dance had been keeping me strong. Although it did cause a lot of pain, maybe stopping was a good thing in the long run as I may never have been diagnosed with EDS.

3. The way in which dance supports me physically

Ballroom dance has helped one Chargie maintain fitness despite chronic illness.On the advice of my rheumatologists I’ve kept up with dancing and eased back into it after stopping; they believe that as long as I’m careful and pace myself that it will help to strengthen my muscles again. Unfortunately with a lot of activities like dance or gymnastics, people tend to get worse when they stop or have to rest an injury. I know that I’m fairly lucky, as some people aren’t able to dance again after an injury. I’m always thankful that I’ve been able to get back into dance being a part of my life. I can’t do as much as I was doing before, but even just the little bit I do helps. With my type of dance, it is quite easy to refrain from hyperextending and stretching too much – a lot of the moves tend to strengthen.

Due to my dysautonomia-type issues, it’s also important to maintain a bit of cardiovascular conditioning, so the warm ups and slightly faster dances help to keep up my general fitness levels, too. Being able to do some beneficial but low impact activity really helps me to cope with finding the balance between not overexerting, and therefore making myself worse, versus the other end of the spectrum of not doing enough exercise, which can also make you worse. This is something that unfortunately applies to a lot of chronic illnesses.

4. Structure and Reason

Another thing that can happen with chronic illness is that you can lose structure in your day and just life in general. At the moment I’m not working, as it’s hard to find jobs that suit how my condition affects me, so I’m at home a lot, which can get quite lonely and boring. Something as simple as having a dance class scheduled or an exam to practice for gives me a bit more to look forward to and to occupy my day with.

5. Mental Health Benefits

As well as having a physical illness/disability, I’ve also struggled with mental health issues from the age of around 15 – anxiety and low mood being the main ones. Something like dance gives me a reason to be more positive and also gives me some confidence despite my anxiety. I’ll never be the most confident person or without anxiety, but sometimes dance lets me have that little bit of sparkle and confidence that I am good at something. I’m also a big believer that mental and physical health really do affect each other so being able to improve both is very important.

About the Author:

Chloe writes about how dance helps her cope with chronic illness on The Unchargeables.Chloe is 25 and lives in the UK with her family and two guinea pigs. She is a French and Religious Studies graduate, dancer, music and musicals lover, football fan and has hypermobile Ehlers-Danlos Syndrome.

Poems by Capricious: A Chargie Speaks of Pain

Capricious Lestrange writes poetry about pain on The Unchargeables


By Capricious Lestrange

That’s what they call me, but it was never my mind that changed all the time; left my aspirations rotting on the vine. It’s easy to dream. Actualization impossible when energy wanes more than waxes and body break better than breathes. Dreams come to die in bones like these.

Head Pain

By Capricious Lestrange

Headaches arrive daily
like the mail or a horoscope,
never quite the same
ever fortuitous.

Some a wire wrapped cap
a size too small,
lurkers that cause little harm
though they persist.

Some are nebulous yet fierce,
Stomach churning, full of lust.
Blanket my brain in chains
Of iron and rust.

Some hover above one eye
bass speaker, magnifying glass,
A tip tap bombast
of cranial persecution.

Others steal sight, blinding
gems of marquis and trilliant cut,
dancing girls in tight formation
among the whorls and fuzz.


By Capricious Lestrange

It fills every thought the way sand invades every crevice. There’s no leaving it behind or brushing it off and even days later, you still find traces of it, here or there; a haunting of sorts. Before you know it, agony is always tagging along. You take her with you shopping, to parties, your job. Your friends are not impressed. Agony has made you dull and they’re wary of what She wants. To be safe, they move away, hoping you might wise up and dump her. You try to pay her off, but Agony cannot be bought. Before you know it, your Facebook status reads “In a relationship with Agony” and your friends congratulate you and sprinkle you with tiny hearts. One by one they drift away, Agony your only counterpart.

Genetic Stalker

By Capricious Lestrange

You are the boundaries I never wanted drawn.
Fault lines shifting in quicksand, elusive as breath.
Thirsty as a lion in drought, you stalk these dry bones
for a chance to suck the marrow.

What’s this?
Solid earth beneath my feet? Sweet, tender grass
tickling my toes and sunshine pierces the veil, imparting
her promising warmth. I sit for a meal of dandelion wine
and greens at her table, arrange weeds for my bed.

Dream of open prairies until claws hook in flesh—
Jaws sinking into bone. Fault lines shift, I never wanted drawn.

Did you know The Unchargeables feature poetry on the website? Read more here!

About the Author:

Capricious Lestrange offers up poetry for The Unchargeables Capricious Lestrange is a former educator who loves to write. When brain fog prevented her from writing the fiction and poetry she loves, she turned to blogging and now writes about her life, her health conditions and what she does to keep them in check. She enjoys spending time with her loving husband, her adorable Russian Blue kitty and dabbling in the visual arts when she doesn’t have her nose stuck in a book. Capricious has EDS, MCAS, POTS, CPTSD, and gastroparesis.

8 Tips to Have an Easy Colonoscopy Prep

One of the most difficult parts of a colonoscopy is the preparation the day prior to the procedure. There are horror stories about the effects of the solution you have to drink, and how the overall experience takes a toll on the body. Many people have more anxiety about the prep than the actual exam. After recently having a colonoscopy, I’m here to tell you about eight tips for an easy colonoscopy prep that will make your procedure a piece of cake!

8 Tips to Have an Easy Colonscopy Prep


Why I needed a Colonoscopy

At the end of March, I began having major stomach issues including nausea, vomiting, fever, extreme fatigue, headaches, cramping, and more. For two weeks I was confined to my bed, barely able to walk to the bathroom in the next room on my own. Added on top of the symptoms, there was a strange mass moving about my abdomen causing pain and discomfort. I had little to no appetite and when I did eat, it caused more pain.

Severe GI symptoms may necessitate a colonoscopy My physician had no idea what was happening to me, so she referred me to a gastroenterologist (GI physician) to see if he could help. The GI physician was intrigued by my issues, and suggested doing blood work, a CT scan, and a colonoscopy/endoscopy procedure. He said these together would give us a better idea of what was happening.

When the gastroenterologist told me I needed a colonoscopy, I immediately began to panic. I’ve heard the horror stories of preparing the day before a colonoscopy from family members, and the prep has always scared me more than the actual procedure. Not the part of drinking the solution to clean out the colon, but the effects of it – cramping, hurting, and not being able to control your bowel movements. I was already having those issues, and I sure didn’t want to make it worse.

Tips for an Easy Colonoscopy Prep

In order to ensure the easiest prep possible while minimizing the side effects of the solution, I did lots of research and asked family, friends, and readers on my Facebook page for tips. I had a few weeks before my procedure was scheduled, and I was determined to use my time wisely. This was how I prepared for my colonoscopy, and I can honestly tell you that I had the easiest prep than I ever imagined. In fact, I slept an entire night (aside from my usual waking up) before my procedure and had zero issues the next morning.

1. Start with Clean Eating

Clean eating can make a colonoscopy prep easierMy mom had her first colonoscopy years ago and she said it was awful the first time around. The second time, however, she changed up what she ate one month prior to the prep and it made for a much easier experience. What she ate would be considered clean eating: no processed foods, high sugar foods, and minimized raw fruits and vegetables.

Avoiding these foods results in less cramping because your bowels aren’t having to purge as much. Also, if your use to eating processed foods and lots of sugar then all of a sudden stop, your body is going to experience withdrawals. The withdrawals together with the cramping will make for a miserable experience.

2. Keep These Items Nearby

When I posted asking for colonoscopy prep tips, several people mentioned items to have on hand such as a fully charged phone and a pillow (some people are not able to leave the bathroom once they start drinking the solution prep). I didn’t need to use these, but the ones I did use were essential once I started drinking the solution.

I kept a blend of fractionated coconut oil mixed with peppermint and Digize essential oils for stomach discomfort. I love, love, love this blend because it’s proven to be such a huge relief when it comes to my daily stomach discomforts. Within twenty minutes of applying to my abdomen, I feel my stomach being put to ease. This was THE most important item I would keep on hand should I need to have a colonoscopy again in the future.

Certain items should be kept near at hand while doing a colonoscopy prepOther items I kept on hand were adult bathroom wipes (better known as butt wipes) and a book to read. The wipes made it easier on my bottom once I started drinking the solution and was using the bathroom every few minutes. Hemorrhoids are also irritated by wiping with regular toilet paper. Cleaning wipes cause less irritation to the rectum and any hemorrhoids you may have.

Having a book to read made the time go by faster, and distracted me from the hunger I was experiencing from being on a clear liquid diet the day prior to the colonoscopy. If you aren’t a reader, keeping a fully charged phone or other electronic device nearby would also be a good distraction to the task at hand.

3. Get a Padded Toilet Seat

When I was younger, I remember visiting my great aunt’s house and being fascinated by her padded toilet seat. At home, we had a cold, generic porcelain toilet seat that was stone age compared to the luxury of my aunt’s toilet seat. Looking back, it’s silly that I was amused by the foam padded seat, especially when it became torn and deflated after being used countless times. However, when someone suggested using one during the prep, I was excited! Immediately, I began searching online for one.

The one I found wasn’t foam because I didn’t want it to become torn or deflated after awhile. Besides, when torn, a foam padded seat is brutal on the back of the thighs. No, thank you! Instead, I found a cloth one reasonably priced. And the best part is that it velcros to your current toilet seat so you can wash it. Woohoo! I couldn’t wait to try it out.

What I loved best about the seat cover when it arrived was, surprisingly, not the added comfort it provided to my otherwise hard, plastic toilet seat. It was how warm and cozy it felt on my bottom! I know it sounds ridiculous, but a huge pet peeve of mine is sitting on the toilet and the seat feeling cold as ice. I don’t know why this irritates me, but it does. This seat cover protects from the cold seat, but it also doesn’t make the butt or thighs sweaty or irritable. Genius product!

4. Treat Hemorrhoids

Taking care of hemorrhoids can make a colonoscopy prep easierSince my first pregnancy I’ve been susceptible to hemorrhoids and have them most of the time. When I was told that the constant bowel movements would irritate, and possibly burst, the hemorrhoids, I knew I had to come up with a plan. I decided to aggressively treat them in the days before the prep by using prescribed hemorrhoid suppositories and external cream. This helped minimize their size and eliminated any internal ones.

During the day of prep and after starting to drink the solution, I used only the external cream. I didn’t apply it after every bowel movement, but frequently. Using the cream and the adult wipes reduced the irritation and prevented any to burst. All in all, I had no issues or painful irritation with the hemorrhoids using this technique.

5. Slow Down the Colyte

Supposedly there are two types of solutions to drink the day before your colonoscopy – regular and light colyte preps. I don’t know how true this is because I was given the colyte and was told by the nurse there was only one type – a lite one. There is one gallon of it, and the instructions are to drink eight ounces of the liquid every 10-15 minutes.

The week prior to my prep, I talked to the nurse about my concerns of having severe cramping and possible nausea with the solution. She suggested drinking it every 20-30 minutes should I have any unbearable cramping or any nausea at all. Since she gave the green light on this, I decided to start with drinking eight ounces every 25 minutes as opposed to the instructions of every ten minutes.

I’m really glad I decided to take this route. This minimized the cramping and the frequency of bowel movements. I was still cleaning out my colon as instructed, but at a slower rate. It took me about eight hours to consume the liquid, well before my cut off of consuming liquids before midnight.

Word of caution: Do NOT drink any other liquids or foods while consuming the colyte prep. This could lead to consuming dangerous amounts of liquids and salts.

6. Don’t Stray Too Far

Several of the tips I received from readers and friends were the same: Stay in the bathroom next to the toilet! It had me wondering just how fast the colyte prep would give me an urge of a bowel movement. I was worried I’d be messing on myself, or worse, camping out in the bathroom all night. The only way to find out was to do it and discover for myself.

Keep near the bathroom during your colonoscopy prep!It wasn’t too bad, and definitely didn’t warrant a sleepover with the toilet. When the urge hit – and it hit fast with little warning – I made a beeline for the bathroom. The furthest I could go was my bed. Any further and I wouldn’t have made it in time. I also realized it was best to leave the toilet lid up. I have a habit of closing it before flushing, and I learned very quickly that the second or two to lift up the lid could mean missing the toilet altogether, if you catch my drift.

7. Keep Warm with a Blanket

I know the suggestion of having an electric blanket or blanket for a colonoscopy prep sounds completely weird and off topic, but I assure you it’s not. The colyte prep is kept cold, and drinking a full eight ounces every 25 minutes made me cold to the bones. My hands and feet were cold to the point of hurting, and I was shivering all over. Having the electric blanket made me warm and stopped me from shivering. It was easier to tolerate the liquid once I had my blanket.

8. Get Rest

Rest is a big necessity each and every day with chronic pain. It’s even more so when undergoing any procedure or stressful situation. In the days leading up to the colonoscopy, I rested more than usual to reduce stress and anxiety. I kept myself occupied by reading books, watching movies with my family, and napping whenever I could.

The day before the colonoscopy, I did zero cleaning, laundry, or cooking. Being on a clear liquid diet for 24 hours gave me hardly any energy, and I didn’t want to put unnecessary strain on my body during that time. That diet gave a whole new meaning to the phrase ‘hangry’, and I knew any housework would only aggravate the situation.

Be sure to get plenty of rest before your colonoscopy prep Resting after the procedure is also critical. After being without food and under extreme stress of the whole ordeal, my body was melting once the colonoscopy was over. I could feel all the tension leaving me drained and exhausted. When I came home, I ate something small and then laid down for a nap. Once I got up, I was feeling almost back to normal and resumed my regular activities.

All in all, I had an easy, smooth colonoscopy prep despite what I anticipated and was told by others. Following the tips listed above will reduce stress on your body and help you make an easier recovery from the procedure.

About the Author:

Brandi writes about preparing for a colonoscopy at The Unchargeables Brandi is a follower of Christ, wife to an amazingly supportive husband, mom to five sweet, crazy kiddos, and a fibromyalgia thriver. As a Navy veteran living in South Carolina, she spends her days cherishing the time with her family as well as reading, writing, cooking, and just being Brandi. Her blog, Being Fibro Mom, is all about thriving the family life while living with fibromyalgia, and the support group, Fibro Parenting, gives additional support and resources to fibro parents. Brandi’s other work in the fibro community include writing for The Fibromyalgia Magazine, hosting a live show about fibromyalgia, and serving as Families & Fibromyalgia program director for the International Support Fibromyalgia Network.