How Fibromyalgia impacted my life

Fibromyalgia awareness daymay 12thmake the invisible visible

#May12BlogBomb :Our lives and how illness has impacted on our abilities to function in society or if you prefer another illness related topic of your choice.

I was officially diagnosed with Fibromyalgia when I was about 21 and I am 37 right now. I had symptoms prior to that and had been diagnosed with hypermobility syndrome when I was 16. I had begun to complain about pain when I was 8 years old due to the hypermobility. I expect the chronic insomnia plus that initiated the fibromyalgia process as when I became a teen I remember the pain being more constant and always being tired.

One thing I learned initially with FM is that I had to moderate my activities quite a bit. When I was in university, for example, I could only work during the summer and not while in class. I definitely learned I could not have as much of an active social life as other people but I could within moderation. Every summer job I had during university taught me a hard lesson on what jobs Not to work with Fibromyalgia. No heavy lifting. No repetitive lifting or movements. No standing for eight hours. No shift work. I knew what I had known since I had worked my first job at I believe 14 and that is some jobs cause the pain to be significantly worse and I needed to aim for a desk job. So right away fibromyalgia limits your career options substantially. Even when you are coping well it limits choices like that. Right away it limits your social activities because you need to conserve energy for what is necessary.

However, had I maintained that level of health I doubt I would ever have an issue with coping. Simply because you do cope. You learn ways to cope with the symptoms you cannot avoid and how to moderate your lifestyle. Even without any treatment, which was the case for me. It is difficult but you can manage it. Have a sort of life in there. At least that is what I had learned. Things do change though.

What complicates Fibromyalgia a great deal are the comorbids that come into play. My first was, of course, hypermobility syndrome, while it came first, it is a common FM comorbid. The next was Irritable Bowel Syndrome. Then migraines. Then chronic migraines. Then hypothyroidism. Then Peripheral Neuropathy in my hands. It is when these get stacked up that coping is far more strained. I had to give up my initial academic career. I had my Masters in Philosophy and had wanted to pursue my Ph.D. but with fibromyalgia, untreated, and chronic migraines, insufficiently treated I knew I could not. It had been difficult to think through the pain for the Masters. I was just trying my first migraine preventatives at the time so there was no benefit from them and the side effects were not helping at all. The neurological aspects of migraines that make it difficult to just speak and comprehend language was a real problem not to mention the additional brain fog. I thought taking some time off would help but working full time actually was substantially worse migraine-wise. The problem with multiple chronic pain conditions and chronic illnesses is that they don’t play well together. Fibromyalgia has this inherent sleep issue. Insomnia and unrefreshed sleep were always the norm.

Add in migraines and you have severe issues sleeping and, then, lack of sleep is a migraine trigger. It is a vicious, horrific cycle when you are working. I maintained working for a few years but it was extremely difficult. I missed far too many days and as you can imagine no employer likes that. I had troubles thinking through the pain when I was at work. Psychologically working through that pain was an immense strain. A constant, brutal and immense strain. When an acute migraine would last for days, which just happens… I would get deeply depressed and suicidal. One year I attempted suicide. I knew at that point if I continued to work I would not survive as I would not have the desire to survive. That is what happens when pain exceeds your coping strategies. And pain like that exceeds coping strategies. 

When I was working full time because of the level of pain from all the forms of chronic pain going on there I was exhausted all the time. I barely maintained the house. I rarely, if ever, socialized. Existence was draining. Everything I chose to do outside of work required recovery time. It had to be a Saturday so I had that entire day and then Sunday to recover before work, and even then that seemed like too much… it was better if it was a long weekend, to be honest. 

Yet you want to occasionally socialize or do things. But if you do you have to accept the Price. Everything has a cost and consequence to it. If you accept that, then go for it. If you don’t, or don’t have the recovery time, or don’t want to pay the pain price then you can’t do it. And sometimes you cannot anticipate on any given day what that Price will be. Sometimes I can walk for an hour and be fine, with breaks of course. Other days I walk ten minutes and I get pain in my hips or knees or feet that just gets excessively worse the more I walk. Makes no logical sense but there it is. On bad days you are going nowhere fast… or infinitely slowly I should say. On occasions when I have been out and about and miscalculated, being forced to walk back to where I came from when that pain hits, it is very Memorable how intense that pain gets and how infinitely slow I walk and the looks I get from other healthy young people around me wondering what the hell is wrong with me. Most things though you know the price so you know how to arrange it so paying the price will not overlap with other prices you have to pay. It is all about balancing the pain. Still, you cannot control flare-ups which I swear at times are triggered by nothing at all… and those flare the pain up everywhere or in just specific areas, for short durations or long durations far above your baseline pain. 

What I say when I go and do anything

It isn’t all about the pain though. It really isn’t. I mean the pain sucks balls but let’s face it the Fatigue is insane. I wake up tired and feeling like someone filled my body with lead and my head with cotton balls. And I cannot shake it. It just sticks to me. I try moving about. Doing some stretches. Some yoga. Some mental exercises like puzzles. And no matter what I do that damn Fatigue follows me around like a shadow. 

I think I have kitten level fatigue

Let’s not forget the cognitive impairments. Like fibrofog. Like forgetting everyone’s name even if you have known them a decade. Like forgetting faces. Like trying to think through molasses. Having an excellent memory, just really, really short. So short you cannot write down a phone number when someone tells it to you without forgetting half of it before you finish and having the ask them to repeat it. And then to repeat it again to make sure you wrote it down right and didn’t transpose the numbers because, let’s face it, that happens all the time with letters and numbers. Mixing them up. And using the wrong word. Fun stuff like that.

What I meant to say was meh…… mothertucker!

FM never stopped me from going to university and getting a few degrees. It never stopped me from finding that desk job and working. I learned ways around the fibrofog quite well in university and applied those to that job. It does make every action you do painful. I shift in my seat constantly because any position becomes uncomfortable. I never get a good nights sleep. I am constantly fatigued. I am a hermit that rarely socializes. Any task, like housekeeping, has to be considered carefully, done carefully and has a pain price. There is always a baseline pain but areas can get worse depending on what I do. Comorbid conditions make things complex and when you add them in it has prevented me from working from the extra constant pain and neurological issues. I can do small things, within moderation and within my limits but I drain quickly. I constantly wish I could do more and feel guilty about what I cannot do. But that is a pretty hefty price not being able to work and having barely any social life to speak of.


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