Author: The Unchargeables

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Active Listening and Engagement with your Friends

We are in an age of digital connection where everyone declares their own thoughts and happenings while we respond to others with a dismissive click of likes, thumbs up and heart emojis. We are fooled into believing we are interacting when we are just talking at each other without really absorbing or caring what other people are expressing to us. We are left without fulfillment no matter how much we text or message because our need for being heard has not really been met. Basic active listening skills can remind us how to be really engaged with our friends. Meaningful engagement is particularly necessary for those of us struggling with chronic illnesses. Here are some tips you can share with your friends on how to actively listen and engage with each other. You can ask your friends to commit with you to utilize these types of strategies when communicating.

Active Listening

Active Listening implies that the participants are not passively letting the other person talk, but are actually hearing, absorbing and processing the other person’s thoughts, emotions and feelings. To show someone you are actively listening to them you respond in ways that demonstrates you understand, or want to understand what the are saying. There are a variety of way you can do this.

          Paraphrasing

Repeating back what someone has said can show you have heard what they communicated. You do not simply want to recite back what they said, but paraphrase what you understood their thoughts to be. This can help clarify if you understood what the person was trying to express in addition to demonstrating your hearing them.

For example, if your friend says “I had a really rough day, I didn’t sleep well because of pain and then I locked my keys in the car.” Instead of saying simply saying “I’m sorry to hear that” or “That sucks” you can add “Locking your keys in the car is a real pain and on top of being so tired you must be completely worn out!”

This example shows the person you understand the aspects of their situation and grasp the extent of what they are dealing with.

        Asking Follow Up Questions

Asking for more details about something someone has told you communicates your interest in the person and what they are saying. For the example above you might add “Locking your keys in the car is a real pain and on top of being so tired you must be completely worn out!” “Were you able to retrieve your keys and get home ok?” This shows your overall concern for their well-being as well as the situation at hand. Another example of utilizing follow up questions might be:

“I was finally feeling well enough to go out today, I took a little walk and had coffee with my niece”

“That’s great, I’m so happy you were able to get some fresh air!” “I didn’t know you had a niece, are you two close?”

        Being Patient and Waiting your Turn

Social Media has conditioned us to be thinking about ourselves first. There can be a strong urge to find a way to move a conversation to your struggles when someone communicates something they need to share with you. It’s important to spend adequate time letting someone express their feelings before you share your own. Rephrasing what someone has told you and asking follow up questions will slow you down and help ensure you are being fair to your friend. If it feels right, you might even ask “Is there anything else you’d like to share, I really need to talk about my day as well, but don’t want to cut you off?” Of course, when you share with your friend you should except the same courtesy of active listening that you have utilized.

        Me Too…

On the surface, telling someone you can relate seems empathic. Unfortunately, it is often dismissive and moves the conversation away from the person talking. If I friend says:

“I had a really rough day, I didn’t sleep well because of pain and then I locked my keys in the car.”

Be careful to not reply with something like:

“That blows. I locked myself out of my car last month and it was a nightmare! It was late, I was tired and I had to wait outside for the Auto Club for 45 minutes! Now I double check I have my keys when I leave my car so that doesn’t happen to me again!”

Take Stock of your Friendships

If you find it difficult to step up your level of engagement with someone it might be time to assess the relationship. If you truly are not interested learning more about your friend or if it feels laborious to ask them follow up questions, then it might ultimately be kinder to let the relationship go.  This will free up that person’s time so that they can find the type of friendship we all deserve. You also want to make sure you are not “breadcrumbing” your friend, feigning interest with short replies to their communications so that you can share your own. Likewise, if you feel unfulfilled by your friendships it might be best to move on.

If you have been feeling unfulfilled by your friendships, examine your communication. Look back on messages and pay attention during future conversations. If you find a lack of active listening between the two of you consider if it might be beneficial to talk about how you support each other or if the relationship is right at all. As Chargie we have to be so careful with the precious amount of energy we have to expend. Make sure the energy you put into your friendship is reciprocated and that the relationship is healthy for your well-being!

About the Author

Rebecca is a free spirit, idealist and dreamer who lives resiliently with fibromyalgia. She lives for sunny days when she feels well enough to make it to the  lake.

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5 Tips to Make Cooking as a Chargie a little easier

We all know too well how hard it is living with chronic illness. It can be hard just to look after ourselves. Before I became ill I enjoyed cooking, now it’s is one of the things that I personally find difficult.  Specifically, the preparing of the ingredients.  Most of the time we end up opting for ready meals, takeaways, toast or cereal.  All things that aren’t the best for us.

Recently I pledged to myself to eat a more healthy and balanced diet. I’m ditching the ready meals in favor of home cooked meals. To do this I’ve had to rethink my whole cooking process. I need to find ways of making healthy recipes and not zapping myself of all my energy.  I’ve created these 5 tips that will hopefully help cooking be a little bit easier for us all.

Prepared Ingredients

When looking at recipes I’ve found that the ones I really want to try out are the ones that require a lot of food preparation. Using knives can be extremely painful on the hands and cause arms to become fatigued and making them feel heavy. It makes you feel that you don’t want to continue making the meal.  This shouldn’t be the reason that you don’t try out new recipes and become a little adventurous in the kitchen.

To avoid the pain and fatigue from preparing meals, the easiest solution  is to buy pre-prepared ingredients.  Many supermarkets will sell pre-grated, sliced, diced and chopped vegetables.  In store butchers will prepare any meat for you, all you have to do is ask. Having the pre-prepped ingredients will save not only from unwanted pain but also time, which means less time spend standing.

The downside of buying pre-prepared ingredients is that it might be a little bit more expensive than normal, but if its saving us spoons.

Rest Up

Standing in front of kitchen counters and cookers can use a lot of energy that we don’t necessarily have.  In the past this has been a reason I personally have chosen not to cook and go for a ready meal instead.  One suggestion is to have a stool or seat in the kitchen and other rooms in the home.

Having these seats or stools in strategic places means that whenever you feel that you need to sit and rest they are there.  You can have a seat to rest up for a few minutes until you feel ready to continue your task or even sit on the seat while  you are doing said task.

I would never have thought of doing this as I live in a small flat but there have been times when I’ve felt like going from one room to another that I need to sit down.  I will be getting a folding stool for our kitchen so I can rest when needed.  Letting me become a culinary genius.

Slow Cooking and One Pot Dishes

In the last few years I’ve seen an increase in the amount of slow cooker or one pot recipes which are  great for Chagies.  Pinterest is a great resource for finding these recipes.  You can find something for everyone and every dietary requirement.

The best part of using a slow cooker is that you can throw in all  the ingredients, set the timer and forget about it until its ready.  You have time to rest or get anything else done.

Batch Cook and Freeze

As Chargies no two days are the same. One day we feel like we could take on the world, the next day we may feel like the world has rolled over us. On those days it’s good to have food in the fridge or freezer than can be warmed  up and eaten without much effort.

When you do feel like cooking, double the recipe and freeze what isn’t used. That will give the you peace of mind that there is something healthy and nutritious for you and your family to eat.

Do Prep Work in Bed

This is another great suggestion. Take some of the ingredients of the recipes your following into the bedroom and do some of the chopping and mixing of spices while sitting up in bed.  This lets you find a comfortable position while you get the ingredients ready for cooking.

If you have other tips to share with readers, please leave a comment below.  If you try any of these tips please let us know how you get on with them!

 

About the Author

Nicola Ogston is a blogger who writes about chronic illness, disability and parenting.  She lives in central Scotland and tries to share her chronic illness journey with the world.

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How am I doing? Let me get back to you on that.

It happens to all of us. You run into an acquaintance in the drug store, or a friend you haven’t spoken to in a while calls you. You greet each other and then they ask the question that can really throw you for a loop…

“How are you doing?”

Such a simple question, yet I never know how to answer it. Should I be honest? How much information should I offer? Or maybe I should just say “I’m good” to avoid any awkwardness. Navigating this basic social interaction can be tricky, especially during those times when your chronic illness is really kicking your butt and things are definitely not good.

Why it’s so hard to answer

I say it’s a simple question, but for people with chronic illness, it’s really not when you think of all the things you need to consider as you formulate your answer:

How well do I know this person?
How much energy am I able to spend on this conversation?
Does this person genuinely want to know how things are going in my life?
How much am I willing to share?
How might this person respond to me?

For someone like me who struggles with brain fog on a daily basis, it can be daunting trying to process all these variables in a split second while the other person is waiting expectantly. I often start feeling very anxious and frustrated (at myself) in these situations, not only because of the mental exertion required, but I also worry that I’ll say the wrong thing, share too much, or come off sounding whiny.

Let’s break down each of those variables, so that hopefully you’ll feel more prepared the next time someone asks you how you’re doing.

How well do I know this person?

If the answer is “not at all” then it’s a no brainer: save your energy. While I can attest from my years working in retail that some people do take a cashier’s friendly greeting as an open invitation to share some very intimate details, there’s no need to share your whole life story with the person who’s bagging your groceries.

But let’s say you’re at least acquainted with this person. It feels dishonest to say that everything is awesome in your life, but you also don’t want to make them back away from you awkwardly after you’ve shared just a little bit too much. In that case, consider one of these approaches:

Tried and True: “I have good days and bad days.”
Optimistic:  “Still struggling with my health, but I’m making the most of things.”
Brutally Honest, But Vague:  “Not very good, unfortunately, but thank you for asking.”
Deflection:  “Well, I’ve been dealing with some health issues lately. But tell me how you are, do you have any recent pictures of your kids?”

These responses don’t offer all the ugly details of life with chronic illness, but they still let the other person know that things are not all rainbows and unicorns for you. They may even find your honesty refreshing in this age of presenting only your best and happiest self on social media.

Obviously, the better you know someone the more honest you can be. You might be surprised at how much better you feel after laugh-crying with your BFF about all the absurd ways your body has managed to dysfunction.

How many spoons do I have for this?

Let me emphasize here that I am always thankful to get a message from someone that lets me know they care. I’m very fortunate to have so many people who love me and just getting a quick hello from them means the world to me.

But sometimes I only have enough energy to read that message and appreciate the sentiment. Even if I did have a little bit more energy, my cognitive impairment makes it ten times harder than it should be to formulate the words for an appropriate response. It’s difficult and exhausting to explain that level of fatigue to people who haven’t seen me on a daily basis since I became sick. So I sometimes end up not responding to their message at all and to those people I want to say “I’m sorry, please don’t take it personally. I really appreciate you reaching out, I’m just not capable of coming up with an honest but appropriate answer right now.”

Does this person genuinely want the truth about how I’m doing?

I’m not implying that any of your friends, relatives or acquaintances simply don’t care about you. But do ask yourself – is this person willing, able and prepared to really listen to the sometimes-ugly truth?

Did they reach out to you and indicate a true desire to learn about your illness and how it affects your life? Or are they in a hurry and don’t have time to listen to the hour-long tale of your health insurance fiasco? And let’s be honest, sometimes you get the feeling that they’re just asking so they can check off the proverbial box: “Yes, I have checked on my sick friend recently. Done.”

I’ve also found that discussing an illness can make some people feel uncomfortable. In my experience, the younger the person the more this seems to be true. I mean, what healthy 30-year-old in the prime of their life wants to face the concept that a life-altering illness or injury that could just as easily happen to them at any moment? An honest conversation about your health struggles may be a scary reminder to them of their own vulnerability and it may be difficult for them to process.

I’ve found that navigating this issue just takes a lot of practice. Unfortunately, I have on quite a few occasions expended precious energy giving an overly detailed update of my health status, only to eventually catch on that what they really wanted to hear was a quick “I’m hanging in there!” Two years into my illness, I’m getting a little better at reading the signals the other person is giving me and you will too.

How much am I willing to share?

Okay, so you’ve established that a close friend genuinely wants to know how you’re doing and you happen to have some spoons to spare. Wonderful! Now you just need to decide if you want to tell them that your new medication is giving you “some side effects” or if you share the gory details of why you spent the entire weekend in the bathroom.

I personally feel that having your life turned upside down by chronic illness is bad enough without broadcasting a full rundown of all your bodily functions to the entire world. I tend to keep that type of information to myself, my parents, my bestie and maybe some other people who have the same illnesses I do just to compare notes.

However, I will gladly share some basic “insider” information about my illnesses with literally anyone who’s willing to listen in the name of awareness and advocacy. So I’m very willing to explain to people what my typical day looks like living with chronic illness and just how bad things can get at times, while keeping the specifics of my nasty drug side effects to myself.

How might this person respond?

It feels very validating to hear“Oh my, you have been going through a difficult time!” You’re not seeking attention or pity and you know that whatever they say probably won’t make the reality of your illness any better. But I think we all have a deep-seated need to have another human acknowledge our troubles and triumphs occasionally. We all need to experience compassion. I understand that more than ever now that I’m living with chronic illness.

But you should also prepare yourself for the possibility that the response you get may not be what you wanted or expected. Not too long ago I gave a long and somewhat detailed update on my health to a friend via text message. I was dealing with some major frustrations regarding one of my doctors at the time and I expressed how disheartening the whole situation was. His response? “Oh, I’m sorry to hear that.” Well okay, I appreciate his concern for me, but after spending so much time and energy I was hoping to get a bit more support than that. But even a flat response like that is still better than the frustrating and sometimes hurtful ones we’ve likely all heard at some point:

“But you look great!”
“You need to try [insert latest exercise trend or questionable supplements].”
“You would feel so much better if you stopped eating [insert basically everything except water].”
“Oh that’s nothing, did I tell you about the time I…”

Give them a chance to be compassionate

The next time you find yourself struggling to answer “How are you doing?” remember it’s okay to take a moment to collect your thoughts before answering. Some days you won’t feel like sharing any details about how things are going for you, even with close friends and that’s fine. Other times though, it might be worth spending some energy to give a well thought out answer. I have found that people often surprise me with how compassionate they are. Being honest and open (within reason) about how my illnesses affects me has allowed me to find common ground with strangers, develop new relationships and increase my own compassion for others.

And if your honest and open answer backfires well, the next time that person asks how you’re doing just mumble something about “hanging in there” and then go straight to gushing over pictures of their adorable dog. Cute dog pics make every situation better.

About the Author

 

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.

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Living with Limitations

I was a physically active person in high school.  I was a two-sport varsity athlete playing baseball and golf and a two-time MVP golfer for my high school. I loved to be outside and active. At 19 years old I joined an adult softball league and continued to be active. But somewhere along the way I realized that my body wasn’t doing what it used to and it ached more than I ever could have imagined. I knew my mother had rheumatoid arthritis and fibromyalgia. I knew that both are thought to be hereditary, but I never thought it could happen to me. Years, many tests and doctors later I was diagnosed with rheumatoid arthritis and fibromyalgia along with a few other chronic illnesses. I was crushed.

Learning to Live with Limitations

The pain began around January 2016. I tried to get exercise by walking and swimming, but slowly I started to feel worse the day after I would exercise. The pain worsened and fatigue began. Eventually I could barely get out of bed. I felt worthless- I couldn’t play baseball anymore, I couldn’t walk a round of golf, I could barely walk around the block. I had to learn to tie my self-worth to something other than my physical abilities.

Finding other things to help with my self-worth was difficult at first. I was and sometimes still am grieving the loss of who I was and what I used to be able to do. I started avoiding people, not going out and not doing anything more than what was required. I became depressed, which wasn’t new to me, but it was a different kind of depression than what I was used to. This depression had a legitimate cause. I felt like I was right to feel awful, anyone would in my situation, right?

With having depression and being on Prednisone for the pain before I even had a diagnosis, I began to eat more and more, exercise less and less and I began to gain weight. The weight gain caused even more depression. I was really felt worthless. It took a long time to recover from the depression and sometimes it still comes back, but I was beginning to learn to put more value on things other than transient physical capabilities. I pushed myself to get out more, I made new friends and got back in contact with old ones. By the end of 2017, I received a multitude of new diagnoses and I had friends to talk about it with. By being open about my chronic illnesses both online and in my day-to-day life, I gained friendships with other people who understand what it’s like to be in a constant war with your own body.

I decided that I wouldn’t allow my chronic illnesses to hold me down. I would eat healthy and get exercise. I’m still working on that, and it’s not easy, but I’m slowly feeling better and getting healthier. Here are a couple things I’ve learned.

Know Your Limits

When I was first diagnosed I was told by my doctor that exercise helps and as much as I hate to admit it, my doctor was partially right. Exercise does help, but I had to learn to go within my limitations and I had to slowly increase what I do in the gym. Doing too much is detrimental,  but doing just enough makes my body feel better and makes me feel better emotionally. Even just doing a little bit of exercise made me feel more productive and gives me a feeling of accomplishment.

When I first started going to the gym, I started off doing the same amount of cardio I did when I was an active athlete – 30 minutes on the elliptical. That was a huge mistake which I paid for the next day in bed in agonizing pain from  overexertion. I had to learned from that to start small and build up to doing more. I went from 15 minutes of cardio a couple times a week, to 15 minutes of cardio 3 times a week, to cardio plus some weights, and now I am adding yoga on top of 20 minutes of cardio 3 times a week. It’s been a process of trial-and-error and learning. Sometimes I make a mistake that causes me more pain, but mostly it’s been a slow progression of getting my body used to exercising again.

Stay Positive

For me, staying positive is the hardest thing to do. I hate that I even have limitations at 23 years old and sometimes I beat myself up over things that are out of my control. The hardest part of getting healthier is to remain positive when I don’t see any results. When I slip up, I have to remain calm and let it go. When I can’t do what I want to, or what I decide I should be able to do, I have to remain positive.

Positivity is the key to get anything done, from doing housework to getting healthy. If all you see is the problem, you can’t see the solution. It’s about going forward without always seeing what’s coming. It’s about forgiving yourself for not always being able to do what you want and it’s about learning to love yourself despite what you can’t do. And that might not be easy, but it’s about trying to remain positive through it all. That’s how things get better.

 

About the Author

 

 

Chris is a 23 year old college student who lives with several chronic illnesses. Chris loves meeting and talking to new people, especially those who struggle with similar things.

 

 

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Fibromyalgia & Loneliness in the Age of Social Media

Relationships are challenging when you’re chronically ill. The catch 22 is that relationships are so important to your well-being, especially when you have an illness like fibromyalgia. Some evidence suggests isolation and lack of meaningful relationships contribute to the onset and progression of the disease. As if finding quality relationships generally isn’t hard enough, feeling ill, tired and unable to engage in activities makes it hard to form new and maintain existing connections.

The Age of Digital Connection

As if we didn’t have it hard enough we are all now living in the age of digital connection. Society is stricken with the social plague of FOMO and a sad face emoji has replaced a heartfelt chat with a friend. The advent and overuse of social media has made it so easy to treat people as casual accessories to your life. With less face-to-face time there’s no foundation of investment and the comments and likes that now serve as quality time together are even more shallow with nothing behind it. This new culture is particularly hard on people who need meaningful connection the most, including the chronically ill.

Changing for the Worst

Not only is communicating digitally unfulfilling, social media has changed the way people behave. Maintaining a social media account is very often focused on yourself. Your thoughts, your pictures, your goings on. Some people have gotten stuck in this type of thinking and even if you are lucky enough to be messaging in back and forth conversation, talking on the phone or actually meeting in person, people often find any way to move the conversation back to themselves. You end up talking at each other and not with each other. Physical embodiments of your social media accounts. No one’s needs are really met.

It’s Even Harder On Us

For those of us with fibromyalgia a meaningful chat can mean the difference between a horrible day and a great day. A friend helping you out or enabling you to go out and share a fun activity together is everything. We look forward to and count on these things. Breaking plans can impact the course of our day or longer. We are also not able to spring in action for last minute plans because someone didn’t have anything else going on or waited until the last minute in case something better came up. Going out takes planning and getting ready is taxing. We may plan our days or week around it. We may be compelled to push ourselves to join a last minute invitation because we need the interaction so much, but we will probably pay for it the next day or longer.

Not Suited for these Times

Humans live in a society. We are conscious of others’ existence and must interact and work together to make society function. Human life was not designed to be lived individualistically. We need each other. We are all a happier and healthier people when we have genuine and meaningful connection. Being friends with a Chargie can require flexibility, patience and understanding. Our experiences however, it make us friends with depth, friends who can listen actively, relate to your struggles and have a blast just being able to enjoy the simple things in life. Unfortunately, social media profoundly inhibits the ability for us to connect with others in this meaningful way.

 

 

 

Rebecca is a free spirit, idealist and dreamer who lives resiliently with fibromyalgia. She lives for sunny days when she feels well enough to make it to the lake.

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From Raynaud’s to GERD: My Chronic Illness Voyage

Where do I even begin…? December 2016 would be good start.  The date where it all began. I remember it all so vividly, it’s like my eyes weren’t really open until December hit and boy was I in for a surprise.

December 2016

The weather was around 9 degrees and icicles had begun forming under my nostrils. Despite the weather I was getting my life started. I was looking for work, starting driving lessons and ultimately beginning to feel like an adult. It was about the start of December when my feet started acting weird. They looked like they belonged to a corpse. I’d wake up and my toes and fingers would be purple. They would feel like pins and needles or I couldn’t feel them at all. I didn’t have time to piece things together though. I was beginning my adult life. Onwards and upwards my friend. Driving lessons were around the corner, I mean, I was so excited, who wouldn’t be?

A few weeks had passed and it felt like I had been driving for years. Then in mid-December I woke up with distinctly purple toes. I’m not talking a light bruise sort of purple. I’m talking deep purple, like black purple. I brushed it off though, like heck, my body’s weird already. I’ll just add that to my list of oddities. I hopped into the car and hit the clutch … WOWZERS … I can still remember the pain. It was like someone pushing my feet into a pile of needles. Why the hell did I feel like that? I walked myself home and immediately threw my shoes off. On two of my toes, on both feet there was a circle, a perfect circle on the sides, purple, soggy looking and green under the nail, gross right?

I decided to put my life on hold. Not because I wanted to, no, because I HAD to. Two months of not doing anything, having to cancel everything as walking became a chore. I was gutted, no interviews, no driving and generally not doing anything other then laying or hopping around the house. It was time to see the GP. I so dread a GP visit.

After the first GP visit I had I was told it was a benign Neuroma.  I was referred to a rheumatologist for an ultrasound of my feet (how exciting!!!). A month had passed (3 months altogether) and whatever it was on my feet was still there, so another GP appointment was in store for me. Deep joy…

March 2017

Hospital time. I had been referred to a rheumatology department by my GP, for what I thought was just cadaver looking toes. It turned out to be chilblains, which then turned out to be Raynauds. Raynauds? What in the world is that? Sounds like a fancy French dish to me.

“Raynauds is a condition of the circulatory system in which blood vessels in the fingers and/or toes spasm in response to changes in temperature, which causes them to turn white, blue, purple and red as the supply of oxygen is diminished. Raynauds may occur alone or be part of another condition.”

Now that’s what scared me “may be a part of another condition”.

July 2017

Oh man, it’s hot … 30 degrees and sweat is dripping off of every orifice I have (TMI I know). I have now been officially diagnosed with Raynauds for a while so it had become a part of me; I was trying to figure out ways of dealing with it and trying to cope. Luckily summer wasn’t much of a problem for the cold. What was a problem though was the heat. My feet looked like raw chipolata sausages, bright red and so sore, not sore as in a cut sore, sore as in I’ve only been standing for 5 minutes but it feels like I’ve been standing in the heat barefoot on hot sand for an hour. The heat was affecting me more then usual and this was when I took to finding support on Facebook groups. Everybody had started mentioning something called Erythromelalgia to me. Now what in the world is that? Sounds hectic and man were they right about it.

October 2017

Another hospital appointment folks, how fun. I showed my rheumy all my photos I had compiled of my tomato toes and sausage hands during the summer hoping, but dreading something would come of it.

Ah, Erythromelalgia. They were right.

“Erythromelalgia (EM) is a rare condition that primarily affects the feet and less commonly the hands. It is characterised by intense burning pain of affected extremities. Severe redness and increased skin temperature.”

This wasn’t all I had found out.  I also have low blood pressure and a positive ANA. A positive ANA (Antinuclear Antibody) means there is an antibody within my body fighting everything, my blood, organs, the lot. The ANA will usually show you what secondary Raynauds you may have, whether that is Lupus, Scleroderma or a rarer condition.  They have no clue what it may evolve into or if it will evolve into anything else at all.

April 2018

Who’s ready for some more weirdness?

This really nasty stuff starts happen to my fingers. That’s not only the best way to describe it, but really the only way I can describe it. In a nutshell all 10 of my fingers:

  • Form crusty calluses around and under my finger nail
  • Have brown, red and purple spots around and under the fingernails
  • The whole finger becomes incredibly sore, the smallest of things that come into contact with my fingers makes me flinch with pain
  • The whole finger, from knuckle to nail, itches like crazy

It came totally out of the blue, on all fingers and has continued on and off since December 2017. After a trip to the GP, she ruled out a fungal infection and referred me to see a dermatologist. The dermatology appointment was fantastic. She looked at all the photos I had taken and asked for me to send them to her, not only to be put in my file, but to be used for research. I received a letter from the appointment a few weeks later stating I have another appointment in November for a scratch test (to see if its an allergic reaction). However the doctor believes it to be Subungual Hyperkeratosis and/or Pompholyx.

March 2018

Snow. Snow everywhere. Thick socks, a hat, gloves, winter boots, winter coat and jumpers. Yet my toes would not take to the warmth. Then came the EM. Once I tried to warm myself up the EM would flare up. Ergh, when will this ever end?

It was a few weeks into March when I woke up at 4 in the morning feeling like I was going to puke, that uneasy feeling in my stomach and the light-headedness. Nothing came out, but that feeling never left. I went into work feeling like I was going to vomit everywhere. It makes you feel on edge, like what if I did puke everywhere? How embarrassing. The only thing that stopped this feeling? Eating. I decided to visit my nearest pharmacy.  They informed me that it sounded like acid reflux, but if this problem persists longer than a week then a GP visit should happen. It was time for yet another GP appointment. Turns out that it is in fact GERD.

“Gastroesophageal reflux disease, or GERD, is a digestive disorder that affects the lower esophageal sphincter (LES) the ring of muscle between the esophagus and stomach.”

Great, another thing to add to the list. On the plus side though, I was prescribed meds that completely made it vanish. Since then it has vanished unless I eat or drink something my stomach doesn’t like such as juice, a fizzy drink or weird fruits and vegetables.

June 2018

My rheumy appointment hath landed, it was same old, same old really. Until I mentioned joint pain. My pain is really weird, it used to last a week a month on just my right wrist and right ankle. Now, it’s still in the same places, but pops in every day. That’s when my rheumy mentioned “”Hypermobility”.

“Joint Hypermobility Syndrome is a condition that features joints that easily move beyond the normal range expected for that particular joint. Hypermobile joints tend to be inherited.”

Explains why my hip pops out of place every now and again though. I dread to think what this means for the future. That’s where today comes into play; onwards and upwards all.  I have four more appointments this year, three dermatology and one rheumatology.  As you can see, it’s become a habit that at every appointment that I have something new diagnosed.

Stay tuned though. I’ll be sure to keep you all updated on my roller coaster of a journey.

 

Bethany is a 20 year old from England; she suffers from Raynauds, Erythromelalgia, GERD, Hypermobility, Anxiety and Depression. She is also the creator of Young, Sick and Invisible a Chronic Illness Blog.

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Sunny Day (with fibromyalgia…)

A Sunny Day…

(with fibromyalgia)

I’ve been waiting so long for this. It’s sunny and beautiful out today. Usually a rare appearance of the sun lifts my spirits and makes me feel better. But today I don’t want to know. I don’t want to know that the sun is out and the sky is clear. I don’t want to see people walking their dogs or out for a run. I don’t want to see it because I know I can’t enjoy it today. I can’t enjoy it like the people all around me taking walks or just going about their business in the warm sunshine. Just thinking about taking a walk makes me tired. And even if I sit out in the sun I know I won’t be able to enjoy it the way I used to. I won’t be able to focus on how lovely it is because I’m too exhausted to focus on anything. And the pain and random ailments in my body are too distracting. The warm weather and birds chirping are all a sad reminder that I can’t enjoy life.

Instead of waking up and being greeted by a gorgeous day I’m sitting on my bedroom floor crying because I’m so tired. I went to bed at midnight last night, which is early for me. I’m a night owl and can easily stay up to 4am before realizing I should probably get some sleep. But these days I have to get to bed early to have any chance of functioning like a normal human being. And even then it doesn’t always work. Some days it seems very random; even if I get a full eight hours of sleep I wake up feeling like I just blinked and now I have to keep going alongside people who have slept, are fully rested and eager to use the energy they’ve recharged to get through the day. I feel like I haven’t slept in years. That the days just continue on with no rest in between and there isn’t anything I can do about it.

For a long time I chastised myself…

if I just did the right things I wouldn’t feel like this. The truth is it actually feels better to beat yourself up because you are convincing yourself that you have some control. The reality is that I don’t have much control over how I feel. I just have to try my best and hope that my body will respond. And the trying is hard on an already tired mind and body. Having to constantly do the best thing for myself feels taxing.  Having to make decisions I don’t want to make about how I spend my time and not getting to do things I want to do is psychologically painful and wears on me.

The Worst Part

The worst part really is that there’s no one to say these things to. I live alone and when I come home from the end of a long day there is nothing in the world I want more than to say to someone “it really sucks to live with a chronic illness”.  That’s all I want. I don’t need someone to fix it or tell me what I should be doing. I just need someone else to know what I’m going through. To have a glimpse into what it’s like to have to go through life being me. To care.  But there’s no one to receive the words. I don’t have any support system to speak of and that’s part of the problem. The loneliness feeds the illness like bacteria.  It’s a constant frustration. I have tried relentlessly to build meaningful relationships. I have been involved in numerous groups and activities. I have constantly reached out to others, sometimes despite my own health. But it never really paid off.  And still, even through the “fibro fog” there’s so many thoughts I’d like to share. If there was someone to hear.

If there was someone to hear today I’d say take this beautiful day away or at least distract me from it until I hopefully, someday again feel well enough to go out and enjoy the sun.

 

 

Rebecca is a free spirit who lives resiliently with fibromyalgia. She lives for sunny days when she feels well enough to make it to the  lake.

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Your Career and Chronic Illness: Four Reasons Your Employer Should Keep You Post-Diagnosis

You’ve been diagnosed with a chronic illness. Maybe you’ve known for a long time or maybe you just found out. No doubt, you have a number of questions, and one of them might be What does my chronic illness mean for my career?

Fortunately, employers have increasingly become more understanding and accommodating of employees with chronic illnesses. It’s not just because they care about their employees- it’s also the law.

The Americans with Disabilities Act (ADA) of 1990 prohibits discrimination against employees and requires employers to make reasonable accommodations for anyone with qualified disabilities. If you have Crohn’s disease, this might be something as simple as easy access to a bathroom. Educate yourself about your rights and take charge of your career.

Reaching out to an employer about your chronic illness can be difficult, especially if you have a special request, but if you require accommodations then it’s important to be able to talk about it. You might even be surprised what your employer is willing to do for you, but until you ask, you might not know. You might just be more valuable than you even realized!

Four Key Reasons Why Your Employer Should Keep You Post-Diagnosis

1. You Make Them Look Good

“Wow, what a great idea!”

Hopefully, you already feel appreciated at work and can confidently state that you are a valuable asset to the team. If that’s the case, then good for you! Otherwise, you might want to think about getting a different job. If you do feel appreciated, then your boss most likely wants to keep you, and a chronic illness is something that he or she will be willing to accommodate.

It looks good for employers to hire and retain people with disabilities. Respected and admired companies typically make accommodations for such employees. The reputation of a company is very important to maintain the health of an organization. Think otherwise? Do a Google Search for the scandals at Freddie Mac, BP, or a number of other companies who suffered the consequences. News flows freely with easy access to information and scandals are that much more painful in the days of social media.

Another important point- employers like a diverse workforce. Why? It helps generate creativity and innovation. Yes, your chronic illness adds diversity to the team. Your personal experiences shape your opinions, thoughts and ideas and these are all things that add value to a team. Unique ideas are the fuel of an organization and employers are willing to pay a premium for them.

2. Replacing Employees is a Pain in the You Know What

 “I won’t be able to find anyone to replace Denise for months!”

It’s costly, time consuming and just plain inconvenient trying to find the right person to hire. If you’ve been working with the same company for a good chunk of time, then there’s a decent chance that hiring and training someone could cost more than covering your disability or sick pay!

Identifying the right person with the necessary skillset, education, background and experience can be extremely difficult, especially as the complexity of a role increases. The need to hire the right labor pool started its own industry in the form of recruiting companies.

Employers consider a number of factors before hiring someone and this isn’t limited to just education, skills and experience. Personality and fit with the organization can be just as important, if not more important than any of these three things. Finding the right fit for a role can be a difficult venture and some of the most successful organizations consider employees to be their most critical assets. Therefore, the next time you think you’re expendable- you might want to think again.

3. Keeping You Promotes Morale

“If they help Denise, then I wonder what they would be willing to do if something happened to me?”

Maybe you haven’t told your co-workers about your chronic illness, but you might want to consider it if you’ve been missing assignments. Maybe your co-workers know the entire story, or just parts of the story, but either way they know something is up.

The culture of an organization can make a business strong or weak. If employees don’t feel respected at work or fear for their jobs, then there’s a good chance that the work culture is suffering. Employees tend to feel appreciated in a supportive work environment, and accommodating employees with disabilities certainly plays into that.

4. Lawsuits and Bad PR

 “They fired Denise because of what?”

Good news for you- it’s not always that easy to fire someone. Firing someone with a chronic illness is a lawsuit and PR disaster waiting to happen. Lawsuits cost organizations huge amounts of money every year. Bad PR can be even more costly as this can have long-term consequences, including a bad reputation. Bad reputations can lead to a number of issues, including decreased sales or stock value, both necessary for business continuity and survival.

Your Career and Chronic Illness

Think holding a career with a chronic illness is impossible? Think again. There are many reasons why your employer should be willing to accommodate your chronic illness. Not only is it a legal right, but you might be more of an asset than you realized. Educate yourself about your rights and reach out to your employer if you have a request for reasonable accommodations. You might be surprised about what your company is willing to do for you.

 

Author Bio:

Angela Tipton is the founder of My Chronic Dreams, a website designed to provide tips and advice to champions of chronic illness and those daring to fight for their dreams. A champion of Crohn’s disease herself, she created the website to help others achieve their dreams of career success, health and wellness, financial success and travel.