Author: Barbara A. Sturrock (Contributor at theMighty.com)
I was diagnosed with fibromyalgia almost 15 years ago now, and as soon as I was diagnosed I went online to research everything I could find. What I found was not a lot of information. Unlike now, there really wasn’t much on this disease at all then.
Every morning I put on my face and didn’t let anybody know how bad it was. There were days I was so tired I honestly do not know how I coped. Every day I laughed with my coworkers, giggled with my kids, kept up with my friends and was a good partner to my husband.
The literature I found on the disease really did not give me an outlook on what the future would be like. There was nothing in anything I read to let me know that gradually over time it would get worse and worse, that every day would become a struggle, that my house would be a mess on a constant basis and that there were some days I would barely make it out of bed.
And, the literature never told me a lot of the things I’m going to tell you about now – the following 10 things that probably surprised me the most. Little did I know that within 11 years of being diagnosed, I would no longer be working as a result of conversion disorder which super-sized my fibro, that falling up or downstairs would become normal, that every morning I would need an hour and a half just to be able to push the pain back enough to be able to function for the day.
Two years later, I would have to give up driving as fibro was affecting my eyesight more and more. My life completely changed four years ago. I became what they call chronically ill, as the conversion disorder tripped me into a permanent fibro flare. Things that at one time had seemed so easy were now things I struggled to manage every day. I need a cane to keep my balance, and a walker now and again when I get really bad. A wheelchair is needed if I am traveling or doing something as simple as going to the mall.
So here we go, here is my list of the 10 things that surprised me because they either weren’t in the literature of the time, or they were considered to be rare symptoms of fibromyalgia. A couple of good things are mixed in as well – nothing can be all bad.
I did not know it was possible to be so tired – that even when you woke up in the morning you would be exhausted just going to the bathroom. I didn’t know trying to do my housework or even getting dressed would tire me out so badly that my legs would literally give out. How is it that you can be so tired, even breathing feels like a chore? Then when it’s time to sleep, you can’t. You might be able to for 45 minutes or so but then you have to get up and move around because the pain is so bad. Broken nights contribute heavily to the fatigue, but even on rare occasions when I do sleep through the night, I wake up exhausted. I would never have believed that taking a shower could become a major undertaking and that I would be so tired afterwards it could take up to two hours for me to be able to get up and function.
2. Fibro Fog
Although the things I read told me about fibro fog, it is not really understandable until you’re going through it. I didn’t know I would forget what I was speaking about in the middle of a sentence, that I would forget the name of my husband or child, that words which should come easily to me don’t and that stuttering would become a way of life as I struggle to find the words.
Of all the things associated with fibromyalgia, this is the one I find hardest to deal with. How embarrassing to forget your best friend’s name or where she lives or her phone number; how embarrassing to be talking to your husband of 26 years and not be able to recall his name; how devastating to be speaking to your child and not able to recall their name. On those days when it is really bad, it hurts me so much to know that at some point I will hurt somebody’s feelings by not being able to remember what they are called.
This one actually surprised me a lot. Who knew journaling every day would be able to give me a look back at how I have progressed over time? My tip to anyone who is struggling with chronic illness of any kind: keep a journal. It will give you the opportunity to remember the good days, the great days and the wonderful days.
It will give you the opportunity to look back on those very black days when depression and anxiety had you so down you actually believed it would be better if you weren’t here. It will make you remember the reasons it’s better you are here.
In my journal, I write down quotes I find inspiring, things I really want to remember and who I talked to each day. I write down project ideas, recipe ideas and think of ways to make my housekeeping easier (for heaven’s sake, it takes me 45 minutes just to make the bed). The journal is like my memory for those days when it isn’t very good.
This one I guess I should have expected – that one by one the friends would all drop away, that I would have to cancel on them at the last-minute or just flat-out say no. It seems so funny to me I have friends all over the world online that I speak to at least a couple of times a week but those who were closest to me are no longer there. I have made some very strong friendships online but all of my friends who live close by I never see any more.