Let’s Learn About Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)

I wanted to take some time to write about Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME). I hope that this will be useful for those who are newly diagnosed to learn a little about their condition or to share with family members who want to know more.

What should I call this illness?

There are many names this illness is known as:

Systemic Exertion Intolerance Disease (SEID)
Post-Viral Fatigue Syndrome (PVFS)
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
Chronic Fatigue Syndrome (CFS)
Myalgic Encephalomyelitis (ME)

I think the reason this illness has so many names is because it is very difficult to explain and none of them really cover what the illness truly is / how seriously it can affect people. For the sake of consistency, I will refer to the illness as CFS / ME as this seems to be the most universal preference, however I think every individual should refer to it by the name they are most comfortable with.

What are the symptoms of CFS / ME?

Where do I start? There are a lot of symptoms for CFS / ME. The primary symptom is of course fatigue. Fatigue is not the same as feeling sleepy or tired. The best way I can describe it is to imagine being awake for over a day unable to sleep but even when you do get some sleep you don’t automatically feel less tired. Your brain feels fuzzy, it can be hard to think clearly or find your words and you can encounter memory problems. This is often called “brain fog” as it’s like trying to think through a thick fog in your mind. It can then cause dizziness, instability when standing or walking as well as blurred vision.

In addition to fatigue based symptoms, many people with CFS / ME experience pain in the body, in joints or muscles, have headaches, general flu symptoms, difficulty controlling your body temperature (finding it hard to stay warm or cool down – going hot and cold), insomnia, nausea and depression. There are many more symptoms as the illness is experiences differently for everyone. As the fatigue puts a major strain on your body, this can cause negative effects on any part of the body.

Does CFS / ME affect people differently?

Absolutely! There are individuals with CFS / ME who are able to continue working full-time right through to those who are bed bound or in a wheelchair (and everywhere in between). Some individuals also experience periods of being healthy followed by relapses into poor health. Unfortunately, there is no way to predict how any one individual will react.

Some medical personnel separate into three categories:

Mild: able to care for yourself but sometimes needing extra days rest
Moderate: experiencing reduced mobility with a variety of symptoms and often needing to sleep throughout the day. Unable to maintain full-time work
Severe: only able to carry out minimal tasks such as making a cup of tea or brushing teeth with significantly reduced mobility or bed bound. Not employed

What causes CFS / ME?

We aren’t sure. Thankfully more research is being done to try to identify a cure and hopefully with that, a cure. The most common theories being that a virus at the start of illness can cause a malfunction in the immune system or that it may be a neurological illness that simply occurs in some people for no specific reason.

How is CFS / ME diagnosed?

Currently there are no specific tests for CFS / ME. Scientists are hoping to identify a DNA marker that could lead to a much speedier and easier diagnosis. Until then the only way to diagnose is to first rule out other illness which can be tested for and then assess the symptoms to determine whether they meet the diagnosis of CFS / ME (usually this is done by a neurologist or a specialist team).

Can CFS / ME be cured?

Sadly, there is no cure. However, I am hopeful that a cure will be found. There is a lot of promising research lately and more money is starting to be put into research in countries like Germany, Norway, the UK and the USA.

How is CFS / ME treated?

There are a number of treatments, which may be used for CFS / ME, however it isn’t an easy illness to treat and some of these may or may not help each individual:

Pacing: learning to understand your limitations in terms of energy and live within them. For example, ensuring to take regular rests, knowing that a 5 minute walk will be okay but a 10 minute walk will cause a flare. The idea is to break the “boom and bust” – doing too much when you feel better, causing a sudden dip in energy then resting up and feeling better, only to repeat the cycle
Pain management: use of medications, acupuncture, massage therapies etc. to manage the pain caused by the illness
Medication: in addition to pain management, other medications are used to manage insomnia, nausea, depression and muscle spasms
Graded exercise therapy (GED): there is a lot of controversy around GED and whether it is a good idea but some medical professionals do use it as a treatment. The idea is to slowly increase your activity to try and be able to do more and suffer with less fatigue. As I said, it’s controversial as many people feel this makes their illness work. Personally I do not agree with it but we should each make our own decision
Cognitive behavioural therapy (CBT): as with many illnesses, negative thought patterns can have an impact on symptoms and fatigue in particular is made much worse by depression / negative thought patterns / anxiety (think how tired you can feel after a traumatic time or a good cry – now imagine it with existing fatigue, you can see how it causes a problem?) CBT works to change that negative thinking and help you to help yourself maintain balance
Maintaining good health: maintaining good health otherwise will often help you control or minimise your symptoms, Many doctors will advise that you stop smoking, lower your alcohol / caffeine intake and manage your weight / eat healthily (a good intake of vitamins, not too much fat sugar etc.)

Your doctor will be able to advise on the above and work with you to manage treatment with you in order to gain some control of the illness.

Is CFS / ME life shortening?

It’s hard for us to know, but all the information we have so far suggests no, CFS / ME does not shorten your life. Of course, more studies are needed in order for us to learn more. As long as you monitor your symptoms and continue to report anything unusual to your doctor to ensure any additional illnesses aren’t missed, then you shouldn’t worry that CFS / ME will cause you to pass any earlier.

Find this sweatshirt HERE

CFS/ME and other fun clothing and accessories at our shop at The Unchargeables Shop

I really hope this gives some more insight into CFS / ME. Please do feel free to share with friends who might be suffering or those who you feel might like to read a little more and learn about how your illness affects you. If you suffer with CFS / ME and have questions or need some support, why not use the link on the top bar to visit our forum and discuss your queries / worries with us?

October 15, 2016October 12, 2016

Sticks and Stones Part II

Sometimes people can be well-meaning, but their words can still hurt. We polled our friends on our Spoonies for Life (now The Unchargeables) Facebook page, and asked, “Which things do you want people would stop saying to you? (even if they mean well.)” You can read the first article here: Words Can Hurt

Here are some responses from our Spoonie friends:

With the current changes in the use of opiates to treat pain, doctors are using different medications to treat us, and often it leads to even more pills being prescribed which are not opiate related. And many of us have more than just one illness, which adds more medications. Unfortunately, our friends and family do not always understand that many different symptoms and illnesses sometimes means the use of many pills in a day.

This is so common for the majority of us! We do focus on the pain, because it is there every moment of every day. It may be low pain, but we still need to pay attention to it so that we do not over do things and hurt ourselves worse. We need to plan around it. There are so many things to consider…if you stand at the stove making supper, it could hurt back and legs, if you are going to the store, do you have enough energy and what devices will you need to use to get through it? And then our initial feelings of embarrassment when we need to use those devices.

OH! If people could only understand the feelings of uselessness and helplessness we feel when we can no longer do the jobs we have loved (or even tolerated!) And the guilt we carry when we have to call in sick or go home AGAIN. Or the physical symptoms of overdoing things by trying to stay at a job longer than we should because we are not ready to give in. And the medication we needed to just make it through the day. We don’t want to be in this position and it isn’t easy for us to make the decision to cut down at all.

Invisible illnesses can be difficult for people to understand. We really do not LOOK sick. If we had a broken leg or an oxygen tank, or a wheelchair, they would not blink when we use our handicap tags. They cannot understand, unless they know someone in our position, that walking and doing can be just as difficult for someone with an invisible illness as it is for someone with an obvious handicap.

These friends mean well, they truly think they are giving good advice. But after all of the testing and procedures we go through, sometimes we know more about our illnesses than the doctors we see!

There is a fine line between acknowledging that we have a chronic illness, and yet understanding that the illness does not define us. We can smile, have fun and enjoy our day, but that does not mean we are healed, or not necessarily in pain. I can be “pretty good” and still be hurting. It is a difficult concept for others to understand.

Some of our illnesses come with a variety of symptoms. Some are always present, some will come and go. Our lives are often disrupted by a new symptom or co-morbid condition. So sometimes it does seem as if we always “collect” problems and our friends and family don’t see that these problems are simply tied to our chronic illness.

LUCKY? First of all, this woman clearly didn’t think before she spoke. Often people don’t consider that using a wheelchair, or being home all day because we cannot work, are not choices we have made for ourselves. They see it as being free to nap and relax, while all we dream of doing is living a “normal” life. When someone says things such as this, they likely just didn’t stop to consider our situation.

We often are hurt by the things others say. Most of the time these people sincerely do not mean to be hurtful. They simply have not had to experience things the way we do when we have a chronic illness. Especially since there are so many different symptoms and the illnesses are presented differently in each of us. While they should take the time to consider their words and learn more about our specific situation, we also need to remember that they honestly have no idea that they are being hurtful. These times give us a chance to speak up and tell them that their words have offended, upset or hurt us and explain why. If we do this, they are likely to think before they speak the next time.

October 12, 2016October 12, 2016

Travelling With a Chronic Illness

On our recent web show, Plug in with the Unchargeables, we discussed travelling with a chronic illness. We shared many tips and tricks to make travel easier. Here is a summary of some of the things we discussed on our show.

Weeks before you leave:

Develop packing lists for every type of outdoor activity. I keep separate lists for camping, taking the kids to the park or a weekend away… I keep these in a binder that I have set up just for travel and other excursions. It also holds my itinerary, maps, and expense records. In the binder, add a list of people to notify that you are travelling, such as the newspaper, mail carrier or pet sitter. Make a list of things you need to do before you go- lock windows and doors, turn heat down, etc… Take a copy of your medications and other medical information as well.

If necessary, call the places you intend to travel to and arrange for any adaptations or services you will need, such as airport wheelchair assistance, or someone to carry in your bags. When you are making hotel reservations, be sure to mention if you need a first floor room or handicap bathroom. You may also want to look up the hospitals in the area you will be traveling to; I once needed to find a hospital when we went to a NASCAR race because I ended up having a kidney stone!

If you use medical marijuana, be sure you know the laws in the area you will be travelling through and to. Remember that you cannot take marijuana or medibles into the airports, and cannot transport it in your luggage.

When travelling to a country where you do not know the language, be sure to take a list of important words such as: Please, thank you, where is the bathroom, I need help, where is the hospital, doctor, I am sick, bathroom, and pain.

Packing:

Pack what you can ahead of time. I keep my “shave kit” stocked with a quart size Ziploc, my travel shampoo and other items so they are ready for TSA air travel requirements. Pack your medications in a gallon size Ziploc so they are easy to get to, keep them in their original containers, and make sure you have extra medications. I keep a copy of my list of medications in it, including their prescribing doctor, and what each is for. This will help at security checkpoints as well. Medical alert bracelets are handy, some bracelets now have a website address that medical personnel can go to and find all of your medical information.

If you are staying with friends or family, take advantage of their laundry facilities. Most campgrounds and some hotels also have these available. This way you can plan to wash a few items and pack lighter.

Do not forget a container of change for tolls, vending machines or laundry facilities.

Keep a carry-on bag (or car bag) with the binder, tissues, extra meds, sunglasses, healthy snacks and a water bottle. I also use this bag to hold my purse when I fly, since it fits under the seat in front of me. You may also want to take a pillow to support you in a car or on an airplane.

While you travel:

Consider registering for TSA pre-check, you will have less fuss in the TSA bag check area, and get through much quicker. Also, notify flight service that you do have a disability; this will help you with the boarding process.

Don’t forget to pace yourself, alternate activities such as walking with activities that are more restful. Make sure you give yourself time to recharge between activities. Ensure that you are moving your legs around every two hours or so will prevent blood clots in your legs. Drink plenty of water.

Make sure you have some time to relax when you return home so you are not overextended by needing to go immediately into your normal daily activities.

www.IndependentTraveler.com has many more tips to help you, and you can watch our show below. Happy Travels!

September 25, 2016August 31, 2016

Spoonie Story: Lois Woken

My name is Lois Woken. I have been a spoonie all my life, however I didn’t know I was until about two and a half years ago. It seemed like growing up I was always sick. I got told I was faking it a lot. I wasn’t supposed to feel lethargic at my age,must be because I was lazy! At least that’s what my step father would tell me. I also was told I was faking how bad my joints hurt, however no one was laying with my while I cried myself to sleep every single night I was in pain. I learned to believe those lies. I told myself I hurt because I was fat, or not exercising enough, not eating healthy enough. I also told myself it only hurt when I exercised because I was so out of shape. I figured the sharp pains in my back and feet were normal after after 8 hours on your feet.
After the birth of my second son at 21 my body really changed. The bouts of fatigue were intense but short lived, and always accompanied by a slight fever and body aches. (some of the lovely symptoms of RA.) I thought I was getting frequent colds so I started taking tons of immune boosting vitamins and herbs, but it never helped, in fact I felt worse. (I now know that’s because I have rheumatoid disease, so I have an immune system that doesn’t work right, so by increasing my immune system I was only increasing my symptoms, by boosting an improper immune system.)

I pushed myself more and more, tried different diets, different exercises. Any thing I could think of to keep going. Then one day my body had enough. I went in to work one night ( I was an ER nurse at the time) and the pain in my abdomen was so severe I became sweaty and couldn’t draw in a full breath. They put me in a bed and began a work up, and that’s when I officially became a spoonie. I was diagnosed with gastroparesis and autoimmune hepatitis at the time. A year after that I was diagnosed with fibromyalgia and my doctor, at the time, was on the hunt for something autoimmune. Finally four months ago I was given the diagnosis of rheumatoid arthritis. I prefer to call it rheumatoid disease since it is not arthritis but an autoimmune disease. I also have Reynauds, migraines, asthma, RLS.

Becoming a spoonie was not an easy transition. I went from high paced, fast working, always going, active ER nurse to stuck in bed ill person almost over night. My husband suffers from PTSD which was quite severe at the time and also had a very hard time adjusting. I was not able to return to work. It took me a year to get disability. In the mean time we were struggling to make ends meet as we had a house payment an RN could afford but a disabled me could not. I had to give my car back to the bank, we tried everything to save our home but lost it as well. In fact we had to sell 75 percent of our belongings in order to be able to move. It was devastating. I was fairly ill at the time (this was 2 years ago). I had a PICC line with 24 hour fluids running and could only eat liquids. I weighed about 105 pounds. The stress of the move made things even worse. We moved from Texas to Las Vegas and put our belongings in storage. But due to just losing our house, belongings and owing in medical bills and everything else, we didn’t have enough money to cover our bad credit to get an apartment. So we left our stuff in storage and went to live with family in Washington until we could get on our feet.

During that time I was incredibly ill. All I wanted to do was die. My husband and I were struggling to get along because we were both grieving over our total loss and had no clue what to do. Thankfully I had my father during this time. He never gave up on trying to help us get through it, help us to see there was a light at the end of the tunnel. He honestly helped me to see that this was not worth life being over with. He helped me see I have a choice in how I feel. I was feeling like a complete loser. I lost everything and had to live in a studio hotel room. He helped me see how wrong I was in my self talk! I didn’t ask to become disabled. I didn’t ask for a body that hurts and wants to die. I certainly didn’t work my butt off for years to earn my RN and now be unable to use it. Becoming disabled does not make me a loser. It makes me a person who suffered through some terrible circumstances. I am a person who is strong enough to survive total loss and still find happiness in this world. I am still worth something. So with my fathers help and a husband willing to fight with me, I made some major changes to my self talk.

Here I am a year and half later. We live in a beautiful apartment in Las Vegas, doing many things we always wanted. Like art for instance. I have been able to access the best doctors I have ever had. We are finally able to pay off bills and will be out of debt in a year. I became very active in Spoonies for life and now have become an administrator, able to help others once again. I also get to be part of the Spoonie space talk show, another way to reach out and help others. I have found I cope better when I am able to help others. It fulfills the part of me that loves being a nurse and helps me feel a little more normal. I hope everyone who feels like giving up has someone in their life to help them see that there is always a light at the end of the tunnel as long as you keep going. Spoonies for Life has been an amazing game changer for me. I finally found people who could understand my pain. People who could help me make sense of the craziness my life had become.

My body still hurts and I still get flares but they are not as bad as they were. Changing how I think about my chronic illness has helped me achieve a better quality of life. I search for things every day to make me smile, things that remind me of the beauty in this world and in this life. My wish for everyone suffering a chronic illness is that they can find the beauty in their lives, whatever that may be.

Lois is an admin of the Facebook Spoonies for Life Support Group, as well as a panelist on the Youtube webshow Spoonie Space.

September 18, 2016August 31, 2016

Spoonie Story: Kate

Hello, my is Kate and I’m missing part of my brain. That’s my ‘go to statement’ when I’m told to introduce myself and to name one interesting thing about me. It usually stops people dead in their tracks and I get statements like, “but you’re so NORMAL” and “I never would have guessed”
Well, it is all true; I was born with a congenital birth defect called Dandy-Walker Syndrome. Now Dandy-Walker is referred to in many different ways but they all basically refer to the same thing. I’ve argued with other patients over this so I just back off but from what I have read it’s all the same. Dandy-Walker Syndrome is a condition in which a baby is born without a portion of their Cerebellum. The cerebellum is located at the base of the skull and is important because it is involved in voluntary motor/muscle movement and things like but not limited to:
• Movement
• Sensory processing
• Olfaction (sense of smell)
• Language and communication
• Learning and memory

DWS affects 1 out of every 2,500 live births but the actual number of individuals affected is suspected to be much higher because of how much the syndrome varies from individual to individual.

My parents got this diagnosis for me when I was 5 days old and my mom was first able to hold me. You see I was born 5 weeks premature and wasn’t breathing. Mom and I were loaded into an ambulance (which had to stop twice because I stopped breathing) and sent to a larger hospital with a NICU, there I spent my first 16 days of life. While in the hospital during those first days I had a CT scan that showed the Dandy-Walker Syndrome and it also showed that I had hydrocephalus.

Hydrocephalus is an abnormal buildup of spinal fluid in the brain. It affects 1 out of every 500 live births, hydrocephalus can also appear later in life because of illness, injury, or the way the body reacts to aging. Anyway, in my case the Dandy-Walker Syndrome actually caused the hydrocephalus. With most DWS patients the 4th ventricle in the brain is enlarged preventing the flow of spinal fluid and causing a buildup to occur.

When I finally went home my mom started doing PT with me. Before she passed away in 2006 she showed me the folder of exercises she did with me every day it was at least an inch thick maybe larger!

When I was 4 months I was finally at a weight where the surgeon felt comfortable operating. After my first shunt placement I spent 3-4 days in the hospital at Children’s Hospital of Michigan. An interesting fact I recently learned: the surgeon who did my first surgery was the first Black Neurosurgeon in the US as well as the first woman Neurosurgeon her name is Alexa Canady, MD and I would love to meet her. My parents told me stories about her growing up, but I digress.

After that surgery I continued to struggle, according to my parents, to hit normal milestones. I started to walk then I got glass because when you have hydrocephalus your eyes are normally affected. Then I had four eye surgeries to tighten and loosen the muscles. In the end I didn’t end up walking till I was about three.

The rest of my childhood was pretty normal, my parents impressed on me that I had a shunt and had to be careful, but that was about it. I did normal kid stuff except I didn’t do the gymnastics stuff in gym class ever. When I got older I helped on the farm baling hay and straw, throwing off the wagons and stacking in the mow.

When I was 13 I had my first revision and I was no longer allowed to help on the farm. I then got excused from gym because kids are mean, they would throw stuff at my head. Not really safe to be around plus I could feel the shunt move every time I ran, which was very painful. The rest of junior high/high school was spent in and out of hospital having revisions. It made life, shall we say, interesting? With my first revision I was out of school from the end of October till January because I got a shunt infection and well you can’t go to school with an IV pole….

I graduated high school on time with my class and started at community college. My first year at school I ending up having an emergency surgery for a blocked shunt. I woke up from that surgery completely paralyzed on my left side. Working to regain function was so much fun! By Thanksgiving that year I had graduated from a walker to a cane, and was walking unassisted in the home. By New Year’s I was going out without the cane but still used it a lot (It was my baby blanket).

I went through a number of surgeries my first two years of college. When all was said and done I ended up transferring to a school three hours away from most of my family and didn’t end up having surgery again until my last year on campus. That was quick and easy in and out surgery and even though I wasn’t back on campus I worked on my online classes and papers I had to write waiting for the staples to come out.

After my graduation in 2014, with a BA in Pastoral Ministry, I skyped into my final 2 classes for my Hospice degree while completing an internship at a local hospice, it was a great experience. In 2015 I started going back in Children’s Hospital of Michigan and seeing a Pediatric Neurosurgeon who gave me a new programmable shunt and I had thought put an end to my problems. In July of 2016 after continued problems with my shunt and going back to using a walker because of being unsteady on my feet I sought out the help of the doctors a Michigan Head Pain and Neurologically Institute. They diagnosed me with Benign Intracranial Hypertension, which is funny because I have a shunt… I’ve recently started treatment and am hoping to start living the life I’ve dreamed of working with hospice or hospital patients taking care of their spiritual needs.

September 14, 2016September 2, 2016

I had to go to to DETOX! Addiction vs. Dependency

By Nancy Thornton

Wow. Yeah. I had to go to DETOX.

How I ended up here is a long story with lots of twists and turns. I guess the root causes would have to be my autoimmune disease and chronic pain. Those two are always giving me new experiences, most of which I’d like to have postponed indefinitely. Trouble is, I don’t get to choose a lot of what happens inside my body, such as the cascade of drug reactions I had this year.

I ran out of my regular NSAID and decided to try Aleve. I got hives after 3 days. Shortly after that, Indomethacin, an NSAID I had taken for years began to make my heart race every time I took it. My rheumy switched me to Nabumatome.

The next week, I was exposed to both flu A and B at a kid’s birthday party. I came down with what was presumably A first since my daughter tested positive for that strain and it was very hard on both of us. In my case it turned into bronchitis, due to my immune- lowering drugs. I had one course of antibiotics that didn’t do the trick. A second, Cephaclor, made my face numb for a day but I ignored it. By the forth dose numbness was also in my left hand a half hour after taking it. Then by an hour after, numbness in both hands was creeping up my arms. I was glad I had read the info about the new drug so I was aware this was an emergency. (always, ALWAYS, read those leaflets!)

Mom drove me to the ER and I had the worst sense of impending doom I have ever experienced. I recited the 23rd Psalm internally just to keep myself from screaming and slapping people. I literally felt like I was going to die, even though rationally, I was in good hands. When medical personnel just would not hurry fast enough I wanted to rip their heads off. I’m not that lady that yells and swears at nurses, but I could have become her. (severe anxiety is a known adverse reaction to Cefaclor) My throat was closing after I arrived. It was anaphylaxis. That’s probably the most terrified I have ever been and the anxiety was worse than the physical symptoms, but anyway, the ER team saved me.

I took my next antibiotic and it was almost gone when I started getting hives from Nabumatome, along with wheezing. (I was on 30 mg of Prednisone had just stopped Benadryl) My rheumy said I now had a drug class allergy. I was never to take ANY NSAID again, not even aspirin or ibuprofen or any product containing them.

After those hives began to heal, I noticed more appearing again. It took me a few days to figure out it was Tramadol. I had been taking Tramadol for about 6 years combined with an NSAID for my autoimmune arthritis.

Chemical Dependency Vs Addiction

I knew from running out a few times that I had become chemically dependent upon this medication. The hot and cold sweats, anxiety, uncontrolled jerking, nausea and sleepless nights were maddening, not to mention the return of pain. If I had to take this medicine for pain every day, what did it matter if I was dependent? This is an issue with which many chronic pain people continue to wrestle.

Chemical dependence and addiction are not the same. For instance, we are ALL chemically dependent upon a substance called H₂O. So much so, that the average person will die after 3 days without it. Diabetics are dependent on insulin. Millions are dependent on antidepressants so they don’t commit suicide. People without spleens are dependent on antibiotics. There are hundreds of examples of people who do not bear the stigma of “addict” simply because their chemical substance is not a pain reliever. So what’s the difference?

Addiction usually involves craving more and more of something, inability to stop, negative social and financial consequences of using. These can happen without chemical dependence (i.e. gambling, sex addiction). Chemical or physiological dependency involves your body’s need for a substance, with negative physical and sometimes psychological symptoms as a result of withdrawing from that substance. There need not be cravings, abuse or any of the stuff addiction entails.

Getting Help

So I was dependent upon Tramadol, which was advertised to doctors a drug with low dependence and addiction risk. It turns out Tramadol is habit forming and has difficult, long lasting withdrawal symptoms. Having been on it for 6 years, a pharmacy friend had told me there was a risk of seizures. I knew I needed some help, so I called my rheumy, but got no support. My rheumy told me through his nurse I would be fine because they had taken many other people off of Tramadol without any issues. To me, the hives and the withdrawal symptoms were equally annoying. Both also could be equally dangerous. What was I to do?

I was sure I couldn’t handle this on my own. Having been sick(er) for over a month, I was SO TIRED. I cried a little, terrified at what it would mean to be in detox. What would my family and friends say? I didn’t want to be another person in chronic pain they could point to and think I was just a drug seeker. I decided to keep most of them out of the loop until it was over. I pulled up my big girl panties and took the phone a friend option. I called someone I knew that had experience with such things. She had me call a treatment center. (I sobbed between phone calls). They said I should call an advocate because unless I needed the full 90-day treatment program, they couldn’t help me. So I called the advocate, who said no one would take Medicaid, which was my only healthcare option. (more sobbing, this time on the phone). The advocate said I should call one more person who was leaving work in an hour. I called repeatedly, leaving messages. He finally called me back and gave me the name of 3 different places to try. I took a look at all 3 on the web and checked that they would take my “insurance”. Check. Looked at what others were saying: all had good reviews.

Then I called the one that seemed to have the highest amount of good press. They said I NEEDED help and that I could come in any time of the day or night and they would see what they could do for me.

It was 3 hours away. My mother lived only half that distance from them and I needed moral support. My son would stay with his father, and my grown mildly autistic daughter would stay with my parents. My son’s father would take care of our pets and get the mail. It was a big step. I won’t say this was easy. None of this was easy. It was the beginning of summer, so we were all off. Putting your life on hold, even for a week, even when you have HAAD to many times before in our chronic journey is never easy. Doing it by choice, even if it’s not really much of a choice is terrifying. When your life and body are out of control, you grasp at anything you can reach to try and control some aspect of it. I know. I know.

I had a 2-hour drive to my mother’s house. I had been off of Tramadol for 12 hours and was already twitchy, sweaty and nauseated. I decided to take more Tramadol and risk more hives rather than a seizure while driving (plus I hate puking with a passion). When we arrived at Mom’s, she was ready to drive for the last leg of our journey.

Arrival

The lobby was bright and calming, full of light and had a large fish tank, which helped me feel better. I summarized my reason for coming on a small slip of paper at the desk and the receptionist smiled kindly. Then I sat waiting with my backpack. I had stuffed 3 changes of clothes, all my meds, supplements, phone, netbook, chargers, pain relief rubs, patches, my plush, extra-large heating pad, my water bottle and miscellaneous items into it.

I saw a series of 4 different people, intake workers, and nurses who asked me more and more in depth questions. I had to give a medical history, mental health and abuse histories, plus reiterate why I was there. They had a bed for me, but because of all my health issues, had to admit me through the emergency department.

I took another Tramadol at the usual time, because my pain was exacerbated by stress. I regretted it as soon as it began to kick in at the ER. Hives intensified, and my face began to swell around my left eye with crushing cheekbone pain. The docs gave me some Benadryl and an ice pack, and increased my prednisone to 60 mg. I took a short ambulance ride back to the behavioral health building. My mother wasn’t with me for the next part.

I had to sign myself into treatment, which meant I could leave any time. The detox program is 3 to 5 days. I would not be able to legally own a firearm for the next 5 years. I don’t have one now and probably couldn’t pull a trigger with my arthritic hands anyway. I had to give them my backpack to be inspected for contraband. That would include all drugs, electronics, sharp items, weapons and strings. One of my shirts was rejected because it had a string. I also had to surrender my shoes or have the laces confiscated. I chose to wear socks. The contraband rules were there because of people in the same building and possibly on the unit who would harm themselves or others with those items, and because they want us to detox from electronics for a time as well. If I smoked or vaped, that was also contraband at this particular center, though not at every center. I had to submit to a body check. Nude. In front of two people. It was not fun, but it was over quickly. They have to be sure you aren’t sneaking anything in, for one thing. For another, they have to document all tattoos, bruises, cuts, scars and rashes. Of course I had hives from head to toe and about 50% of my body was already covered with psoriasis, so there were lots of questions.

Treatment

During treatment I Reacted to both of the detox drugs (Subutex and Soboxone they gave me, so I ended up with Benadryl injections and steroid cream for my hives. So I detoxed with minimal help. I had to stay a few days longer because of my allergies. Everybody was given a blood pressure lowering patch. We could get Tylenol, Ibuprofen, our regular prescribed meds, anti-nausea meds, or hot and cold packs if we asked for them. Vital signs are checked every 4 hours. There is a headcount every 15 minutes and daily room checks.

Time sort of stands still in there. They keep you busy. I can’t tell you much about the inside because of privacy laws. I can say that while there, we had group discussions on addiction and recovery a lot of the time. We also had art therapy and other things that were fun. The fed us well and the food was OK. The people were amiable, each with different issues than mine, but all there for chemical detox. We actually laughed and cried together, watched old movies and played games. It was like an extended family, with all ages and walks of life represented. It was a challenging and life-giving time and one of the best weeks of my life.

They treated my pain with gabapentin, and it made me feel dizzy/drunk for about 2 weeks. I couldn’t drive, so ended up staying with Mon and Dad after I was discharged. It gave me really intense stupidity brain fog for about 2 months. I was used to a sharp mind, and that was probably the hardest part. No way could I have handled that during the school year. Eventually the gabapentin really worked for me. I had to wait it out, and I am on 3200 mg daily which is a lot, but it works for my every day pain. I still have to add Tylenol arthritis on top of that a few times a week and it helps some as well. I’m at a pain level of 3 most days now, going up to 5 tops.

So it didn’t turn out too bad. I was right to take initiative and get myself healthier, and lucky to have had the ability to do so. I had some support, although most people I know didn’t have a clue about it at the time. In the end, my stay was funded by the hospital itself, because they did not actually take the kind of Medicaid that I have. If you ever think you might need this kind of help, don’t be afraid. Be proactive. It can be a great experience if you approach it with an open mind and heart.

Nancy Thornton, is a former homeschooling mom of 3, living with Psoriatic Arthritis Mutilans for the past 8 years. She decided to follow my dream of getting a science degree after her diagnosis. She has an AS in Biology and minor in Environmental Studies. Her goal is to be an Agricultural Extension Agent and community educator and she is embracing the journey. What gives her joy and courage: her family, nature, faith, music, fellow Spoonies and her cat George Purrington Silverstripes.

September 11, 2016August 11, 2016

New Diagnosis

By KateDekoski

As those of you in the closed online support group may remember that on July 5th I spent a whole day being evaluated at a headache specialist’s office. The diagnosis they gave me at the end of that very long day was Benign Intracranial Hypertension, and even though I didn’t know anything about it I got excited because a doctor was recommending treatment that would allow me to have less headaches and a more normal life. A life like I used to have, it was a long road to get to diagnosis I had been having symptoms for so many years and everything was attributed to my shunt.

New Hope

The diagnosis of Benign Intracranial Hypertension gave me so much hope, I was validated! What I was feeling was real and better yet there was a treatment I could start! I had to wait for my Neurologist to prescribe the meds because the specialist I had seen was just a consult and thus they did not prescribe me any meds. So when I finally saw my Neurologist at the end of July I started Diamox 250mgs BID. Here I am about two weeks after starting it and I feel so different. My headaches aren’t as bad or as often. I still can’t lay flat on my back but maybe in time, GOALS! I feel like I have been given a second shot at this little thing we call life!

New Life

I feel like I have a new life, even though I am still working on getting the rest of my body in order. Just saw a new doctor the other day and we have a plan of attack to figure out what is going on with me… Anyway that’s small potatoes compared to how I feel right now and if the other stuff doesn’t get totally figured out right away I’m completely fine with that. It’s just so good and so amazing to have my life back from what it had been where most days were spent in bed trying to survive my days. I’m so happy those days are gone and now I can be me, or rediscover who that really is…

(For more information on Intercranial Hypertention, see the National Eye Institute at: https://nei.nih.gov/health/iih/intracranial)

September 9, 2016June 21, 2019

Kristina: A Letter to My Friends and Family

You see me post memes and articles about Chronic Pain and Fibromyalgia almost daily. I know sometimes you roll your eyes and think, “For Pete’s Sake get over it!” or “Seriously, another post, we get it!” And I understand. I really do. Seeing someone post pictures of the same topic over and over can be boring, and sometimes annoying. And if you feel that way, I am genuinely sorry, and I still love you anyway. I want you to know that I am not looking for sympathy, or “poor baby” responses.

Here’s why I do it: For me, Fibromyalgia and Chronic Pain are something I deal with EVERY minute of EVERY day. Truly. It is why I needed to leave a job I loved very much one year ago. It is why I leave early, sit outside the group or look for quiet places in the middle of a party. It is why I do not know one day what I will be able to do the next.

Fibromyalgia affects me in many different ways. There are over twenty recognized symptoms of fibromyalgia. The main symptoms are:

1) Chronic (meaning almost always present) widespread (meaning throughout the body) pain, including headaches, sharp and aching pain in connective tissues, jaw and facial tenderness, muscle pain and tenderness, abdominal and menstrual pain, morning stiffness, and numbness, tingling and burning feelings on the skin.

I have ALL of these at some point, and though they are lessening now with medication and physical therapy, I can expect them to return at any time.

2) Fatigue and sleep disturbances, which include insomnia, cognitive dysfunction, memory interference, difficulty concentrating and performing simple mental tasks (which, yes, is medically referred to as “fibro fog”), low energy, and reduced tolerance for exercise.

I have ALL of these, though I am able to manage them somewhat with the help of medication.

3) Other symptoms and overlapping conditions: Irritable bowel syndrome, sound sensitivity, light sensitivity and light sensitivity, muscle twitches, anxiety and depression (typically caused by the frustration and loss of your former “self” and adaptation to your new “normal”), restless legs syndrome, vision problems, dizziness, and problems with coordination.

I have experienced ALL of these at various times.

And, as I said before, there are over twenty recognized symptoms, as well as many overlapping conditions (I do have a handful of those as well). That is a lot of stuff affecting me on a daily basis.

People often ask me what causes fibromyalgia. There is no easy answer, as we do not fully know right now. It is thought that an illness or trauma (physical or mental) can trigger a “glitch” in the nervous system, causing the brain to recognize a pain trigger when there is none, or amplify the pain signals from slight touch or injury. The brain does not “turn off” the signal when it should, and so constantly perceives pain when there is no need for it to. There is also suspicion that there is a genetic component present in some people, predisposing them to the condition.

What happened to me? Who knows? From talking to my family and physician, I can trace many of my symptoms back to about the age of thirteen. Then it was thought to be “growing pains,” around the age of fifteen, a doctor labeled it arthritis. When I was twenty, I was diagnosed and treated for Rheumatoid Arthritis, but at twenty-seven, it was finally recognized as Fibromyalgia. It was a long road to a correct diagnosis.

What I want you to understand from all of this is: I will always do what I can, when I can. I have good days and bad days, and just because I did something today, does not necessarily mean I can do it tomorrow; however, maybe I will be able to do more tomorrow than I did today! My life is unpredictable, but I will not let fibromyalgia become my excuse. So, yes, I will continue to post information about fibromyalgia, and maybe you will read it, and maybe you won’t. At least you will be aware of its existence, and remember that someone you know struggles with it. Because the more people are aware, and the more people that share the information, the more people will support fibromyalgia research, and that might help me out in the end.

As always, much love and many hugs to you all.

September 7, 2016September 7, 2016

Living Wills/Advanced Directives/Power of Attorney; Why Should I Worry About Any of This?

By Kate Dekoski

On a recent episode of Spoonie Space we talked about advocating for yourself in a medical situation and I brought up a topic no one really likes to think about or talk about, but it’s something we should all be talking with our families about spoonie or non spoonie.

My Experience with my Mom

When I was 14 my mom was diagnosed with an aggressive form of brain cancer and she went on to have a seizure and stop breathing. The hospital had to put her on a respirator so she could breath. She never wanted that but because she never filled out the paper work for a DNR (Do Not Resuscitate) order we watched her go through another year or so of a fast decline. It was hard to watch. Yes, I do love my mom and I miss her horribly, but when you see someone you love having seizures almost daily and who is now blind and they don’t know you anymore you just want their pain to end.

My Experience as a Patient

Being a chronically ill child having numerous brain surgeries and tests is difficult on its own, but it’s easy because mom and dad have the final say in your care. Once you become an adult if you aren’t able to consent to surgery or whatever yes the hospital will treat you but they will also call everyone and their brother to get consent to do so.

There was an experience not too long ago where after having fluid taken off my shunt I started to exhibit signs of high intracranial pressure. The hospital staff had me sign off on surgery even though it was clear that I was totally out of it in pain. My aunt who is a nurse was there and extremely concerned. Within a few days we had papers signed that made my Dad my first healthcare proxy and my aunt my number 2.

School: Hospice Experience

My time as a hospice major has taught me a lot but I think right now the most important thing I can pass on to you is what I have learned about Living wills and all that other stuff. It is incredibly important that you have these talks with your family about what you want if you can’t speak for yourself.

Place yourself in their shoes or better yet image something has happened to one of them. What would they want? To be put on life support? To be left to die in peace? Or anything in between. When talking to your family it might be helpful to look at the “FIVE WISHES” website and PDF https://agingwithdignity.org/five-wishes/about-five-wishes

Living Wills

While living wills are not legally binding in all states, most will uphold the Five Wishes Document or you can use it as a template to write your advanced directives or attach it to your advanced directives. While living wills are more limited then advance directives like I said above most states do accept the Five Wishes because it gives more power and more direction then standard living wills. For instance unlike standard living wills the FIVE WISHES allows you to name a couple health care proxies.

Advanced Directives

This form tells your health care agent, whomever you chose, what you want to do if something happens and you can’t speak for yourself. It is a legally binding document and different states have different forms that are used.

Durable Power of Attorney

With Durable Power of Attorney you are choosing who you want to make medical decisions if something happens to you and you cannot speak for yourself. It is important here as with the Advanced Directives and “Five Wishes” that you chose someone whom you trust to act in your best interest. I know of wives who have chosen someone other than their husband because they know he wouldn’t be able to “pull the plug” I know children who have chosen people other than parent’s for the same reason.

The Nitty Gritty

With all the above documents it is important to review them occasionally and update as needed or as your preferences for care change.

You may be still wondering why I’m talking to you about all this, why a 26 year old is so concerned about other people filling out papers and talking to their families about events that may or may not ever happen. The answer is with our population (spoonie nation) and our “normie” friends and relatives we don’t know what the future holds and with all the time we spend at the doctors and/or in the hospital it is important to talk about these issues. One day you could go in for surgery and an hour in the surgeon goes to your family and says there has been a complication, he asks what your family wants to do, what you would want. Your significant other doesn’t know. Scary thought, right? I know it is for me.

This sick little girl has been thinking about this stuff for a long time and how important it is. Even if you don’t fill out any of the paperwork, please just sit down with your family and have the talk. What do you want done if you are unconscious? Do you want music played, prayers prayed, visitors, or to be alone. Do you want people to touch you, massage you with lotion or keep their paws off? It’s a lot to think about and a lot to take it but it is all important and may put loved ones at ease to know what you want when the time comes.

September 4, 2016July 15, 2019

When Borrowing Spoons Isn’t Enough

By Erin J Hopkins- A Spot For Me

For those of us that consider ourselves “Spoonies”, borrowing spoons is a way of life. Some days I know I will be going to work, so there go most of my spoons right there. Then, if I have to do anything else… forget it, I’m borrowing from the next day. A trip to the store has become a huge workout and takes more spoons than it used to. So, what can we do to “recharge” our spoons?

Well, there’s the most common way, sleep.

I personally love naps (just ask my family). They do have unfortunate side-effects though. Often on days I nap, I end up not being able to sleep. Now, I always have trouble sleeping, but it’s significantly worse on nap days. But the best thing to do is schedule around other plans. For example: If I have to be up early the next day and I know I will be up too late that night if I take a long nap, I will make sure it’s earlier in the day and I set an alarm to keep it shorter. If I have to be up super early (to get the kids on the bus, or something) but do not have anything else to do that day, I will not worry too much about sleep the night before and sleep during the day. My body would rather do that anyway. Yes, this may mess up my inner clock for another day, but it recharges my spoons and that is what I need more. If I spend all my energy forcing myself to sleep at night (when my brain doesn’t want to), then turn around and force myself to stay up all day, just so I can sleep the next night… all I’m doing is depleting my spoons more.

Another way is, hobbies.

This one can be a two-edged sword. Some hobbies can suck the spoons right out of you. Like, I love crafts! I like to make things that were old, new again. It’s fun and environmentally friendly all in one. But it’s also killer on shaky/painful hands. That being said, there’s nothing that makes me feel more energized than getting my crafting supplies out and starting a project. It always takes me a while and there will be pain (of course), but when you love something it will make everything else better. My recommendation is to stop before the pain kicks in, unlike me. So whether you’re into crocheting or horseback riding, don’t give up what makes you happy. Just don’t let it cause you more pain.

Alone time, alone time, alone time!

Maybe for some people getting time to themselves is no problem (or their problem is too much time alone), but for many of us it can be one of the hardest things in the world is finding a moment to relax. For me, it’s at night after everyone else goes to bed. It’s probably why I have such a hard time falling asleep (ok, it’s definitely why). As a parent of two and someone who still works part-time, I find it hard to unwind at the end of the day. I have tried everything! Yoga, structured meditation, adult coloring (which I do love), basically the whole range of tools we’re told will “bring us back to zero”. I’ve found what works best for me is quite. If you can’t do this at the end of the day, do it during a break at work, or while the kids are at school. But if you find that you’re feeling low on spoons (and you don’t have time for a quick nap), try to get to a place where you can sit in silence. Some people can’t do it, and that’s ok. Listen to music or an audio book, just don’t engage your eyes on anything. Close your eyes and breathe. You’re going to think about all the million things that our brains tend to fixate on, but that’s ok. Get those out of the way, even have a pen and paper there with you so you can write stuff down. I have a terrible habit of forgetting about things until late at night and then not following up on them, but when I write it down while I’m thinking of it during silent time, I’ll see it later and remember.

The Spoon Theory has made such a huge difference in my life. I even have a tattoo on my wrist that says “Don’t Waste Your Spoons” to remind me on a daily basis not to take for granted every single piece of energy that I have. I still run out, all the time. But by using the tips I’ve put on here, I am making the best out of every spoon in my drawer.

Erin J. Hopkins – A Spot For Me

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