Living with an Invisible Disease

I live with Fibromyalgia. First of all, I’m one of the lucky ones. Some people can’t work and struggle with day to day activities. There are help groups set up with motivational messages and jokes, and plenty of stories of frustration and pain due to life with Fibro, one of many invisible diseases/ disabilities.
It’s called “invisible” because you can’t tell that someone is sick just by looking at them.
It’s something I was diagnosed with a few years ago, and while it’s great to put a name to all the things that are wrong with me, knowing that there’s no cure really sucks.

So what is it?
Pain. That’s the main thing. Pain all over. I have pain in my lower back as I type this. I also have a stabbing in my right shin that comes and goes. This is normal. There is always pain, it’s just in different places and at different strengths. There’s different ways that the pain feels too: stabbing, dull, prickling, and tightening. The worst sort for me is the type around my ribs. It can feel like you’ll rip cartilage if you move.
And then there’s different triggers. There’s what I call “random pain”, like what my shin is doing, which basically means there is pain for what I consider to be no reason. And then there’s “annoying pain” which is when I get pain from something I shouldn’t eg. if someone hits me on the arm, like a joking gesture, my arm will hurt for an hour or two afterwards. You know those entry gates they have at supermarkets to stop trolleys exiting out the entrance? Hate them.
And finally there’s “pain pain” which is when something is broken or seriously wrong. Deciphering when it’s this one can be difficult.

I have medication that helps like diclofenac sodium. You get it in either 50mg or 75mg tablets, and can only take up to 150mg per day. It’s kind of like voltaren, but stronger. I take it with food when I can’t handle the pain, and sometimes as a preventative measure if I know I’m about to do something that could cause pain, like being on my feet all day.
I also have amitriptyline which helps me sleep, but can leave me feeling a little groggy in the morning. But without it I’m awake all hours, so you have to weigh these things up. I have found that amitriptyline also helps me with “Brain Fog”, another problem with Fibro.

Ugh. Brain Fog. The worst.
I can forget words, names, basic stuff I should just know. For example, when I was working in Palmerston North, our offices had a pin code you had to enter to get to different parts of the building. I used to enter it about a dozen times a day.
One weekend I went to work and entered the code two or three times, went out to do a promo, came back and entered the pin another few times, and then I got a text from my family who were waiting downstairs. I went and got them and brought them up to the office… only now I suddenly had no idea what the code was.
I had a rough idea of how many digits there were, and where the numbers were located (like three at the bottom, three at the top) but it took about 20 minutes of me trying before I stumbled upon it, and then another 20 for me to work out what the code was so that I could enter it next time.
Another part of the Fog causes confusion. Words gets muddled, I’ll say stupid things, or make really stupid mistakes. Think about the last time you were drunk. Yup, that’s me.

Fatigue also drives me crazy. I’m tired all of the time. I can draw energy from somewhere to get my work done, but sometimes just getting up out of a chair, or even out of bed in the morning, takes all the strength that I have. People mistake it for laziness which is also frustrating. I remember being all amped to go to the gym after work one day, I jumped in the car, pulled into their car park and then found I was completely unable to get out. Even when I eventually drove home, I sat in the car, just trying to will myself to open the door and stand up.

Many people get depressed with Fibro. And I’m sure you can understand why. There’s been plenty of times when I have questioned whether I should be working. But only on my really bad days, for the most part I feel fine (you know, except for the pain, tiredness, and that). I feel lucky that I’m not as affected by Fibro as others are, but if you see me limp into a store and then walk out fine, well… that’s Fibromyalgia.

There are many more annoying symptoms, and people with Fibro have to deal with the side effects of medication too. Not fun.
There are also, as I’ve mentioned, many more invisible diseases. We may look fine on the outside, but there’s a war waging on the inside, and sometimes we just need a little patience and understanding.

One response to “Living with an Invisible Disease”

  1. […] playing hockey. Stopped dancing. Eventually stopped acting. And in my twenties I was diagnosed with Fibromyalgia.I’ve gotten used to Fibromyalgia over the years and am much better with managing my […]

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