It is Fibromyalgia Awareness Day today
I have done a few fibro posts recently:
Rock your purple!
Today’s topic for fibromyalgia is Challenges
We face many challenges with fibromyalgia. Here are some that I have experience with.
I found out when I was younger via every summer job I worked that there are certain jobs I cannot do with fibromaylgia. I can’t do a customer service job where you stand all day. I can’t do a job where you have to lift any sort of weight all day. And I can’t do a job with repetitive movements… that is a massive chest wall pain trigger. So basically I need a job I can sit down to do, like an office job. Even as a bank teller, I get to sit down.
Another work challenge was that it was next to impossible to get them to do an assessment for accommodation in the workplace for me. It just literally never happened. This could have improved the pain from sitting all day.
And the third work challenge I faced was fibro fog. Forgetting policy. Forgetting simple things. Forgetting words. I had a notebook and binders, for cheats. Forget? Look it up in the area I have made for just that. But it doesn’t stop you from sounding like an idiot when words never come out right.
The final work challenge is dealing with the relentless pain and immense fatigue and trying to be productive through it.
It is hard to make definitive plans. I may be having a really bad pain day when the event comes up and have to cancel. I cancel a lot. And other times I have to leave early when I get too fatigued or in too much pain. And the fatigue just prevents the desire to go anywhere. Not even counting how sucky it is with pain. So what social life I have is really rare and mellow.
Around the house challenges
I never seem to get housework done to the level I want it done. I can only do one Thing a day. And one Thing the next. To pace myself. If I do too much, assuming I even have the energy to, it will flare me. So I do it bit by bit. But then by the time I get things done, it really needs to be done again because it is so slow. So the whole house is never to my satisfaction. I can help with painting walls or painting a fence… but it Will trigger a massive flare. As will cleaning the walls.
Basically with fibromyalgia we:
- Have challenges with pacing. When we do too much, instead of pacing. We flare, and flare badly.
- Flares are a challenge in themselves because they happen for many reasons and when they do we can’t do much at all except self-care
- Painsomnia and the problems we all have with sleeping are a real challenge. Trying to get actual restorative sleep for 6-8 hours is difficult. And if we oversleep? That causes a lot of pain.
- Fibro Fog is a real challenge for work and just functioning.
- Fatigue is a challenge because when it is high we have no energy for anything. And everything saps our energy so very fast.
- The unpredictability of symptoms and severity is a challenge because it is hard to live a life when any plan could be ruined or days missed at work.
I always recommend:
- Exercise: slowly building up aerobic exercise. If we get up to 20 min a day, walking or stationary bike… that is a pretty good achievement.
- Pacing even on good days, is something I recommend a lot. It does prevent overdoing it flares. And it manages our energy levels.
- Napping when you need it. And also resting before you go out to give a boost for your energy levels.
- For fibro fog like I mentioned I write a lot of things down for reference of what I need to know. I cannot predict how bad my memory will be on any given day. I end up doing a lot of typos with FM as well, when the wrong word comes out… so I tend to do everything on the computer and not handwritten. It can catch my weird FM typos. (with the peripheral neuropathy I have in my hands the computer is far better than handwriting).
- Epsom salt baths are something I do for self-care and getting a boost of magnesium
- I highly recommend taking magnesium. My doc also recommended 5000 iu of vit D for chronic pain.