There are a lot of things I wish people understood about Fibromyalgia I would like to share for fibromyalgia awareness.
Here are a few…
We have ambition.
Just like all the ‘normals’ out there we have ambition. Career goals. Things we desired to do with our lives. It is just the syndrome with the pain, fatigue and comorbid conditions interfered with that reality. We ended up making compromises and getting other jobs. Or we were forced to work part-time. Do flexible hours. Work from home. Or go on disability. You have to understand this was a hard sacrifice for us to make. It was one of those compromises that we feel stole something from us but we needed to make for our health. Not that we are lazy and living it up. No, we wanted to have it all. A career and a way to manage our illness with it. It hurt to know we couldn’t.
We look fine, but that is our Baseline pain.
What you see when we look fine and are doing well enough to function is our Baseline Pain. It is the pain we deal with no matter what. Always there. We are not ‘better’. We were not ‘cured’. There is not fine one day, sick another. It is our baseline craptastic feeling of existence. So we feel we can deal with this and do slightly more moderated activities. Don’t see this and assume why can’t you do That all the time. It is a mistake. You are looking at a damn fine day.
We have flare-ups.
Flare-ups of pain often come from pushing ourselves beyond our limits. Which we do because often we feel we have no choice. That we must. And sometimes we do it because there is something special we want to do and are willing to pay the inevitable pain price. A flare-up is a large jump in symptoms and pain. We are low functionality on these days. We need downtime. We need rest. And we need to not feel guilty about this because we need to focus on self-care. I’ve had flare-ups that are just random. Hit me hard and I just had to recover like usual. Minimal activities, rest and self-care. This isn’t an ‘exaggeration’ this is a painful event that can last for days.
We guilt a lot.
We compare ourselves to our past healthy selves. To other people. To a fictional self that never got ill and did great things we never did. And we feel guilty for clearly failing to be those things. We feel guilty about taking care of ourselves when we should be trying to catch up on housework or anything… to feel productive. Because are we not supposed to be productive to be useful? We never give ourselves a break. People criticize us with their stigma and lack of knowledge but we are far worse on ourselves than they ever will be. Getting used to an ill existence is a difficult task. And making us feel guilty isn’t helping the matter, it is reinforcing the believe we should feel guilty, like a failure and shame at being ill.
We are tired.
We have all-consuming fatigue. Like walking around with a lead blanket all day wearing you down, making it hard to engage in activities and when we do… it exhausts us. We are running on empty from the sleep deprivation and fatigue combined. So we need to rest often. We need to take short naps to boost what little energy we have. This is not lazy. It is the management of energy conservation.
We have to think about moderation in all things. We have limits and we know what happens if we exceed them. We have to pace our activities all the time. We cannot rush through the day with several things on the menu planned. It simply doesn’t work that way. We have limited energy and pain resources to use. We have to carefully decide what we have the energy to use on that day. People often do not understand this limitation, which for us is a lifestyle. Maybe they don’t understand because they are in such a rush all the time and we cannot be. To do so leads to pain, flares and boom and bust pain cycles. All of which we try to avoid.
The thing with Fibromyalgia is that it is always there. It seems like every system in your body is against you. If it is not one thing, it is another. All over pain all the time, but also specific pain in some area that quite a bit hurts more than the rest. And flares that hurt significantly more than normal. We are constantly adjusting to this on a daily basis and managing as best we can in a body that fluxes with symptoms and pain constantly. For example over and above my baseline pain my knees and feet are killing me, I have extreme nausea and fought all day with IBS-D. Who knows what tomorrow will be like.