There are many posts online about fibromyalgia now, and I have read many of them too! Doctors, relatives, those affected and those who understand each other – all write their opinions. And there are many of them. I have read blogs, professional articles and countless posts in different groups and forums where people share their everyday views in a normal life .. with fibromyalgia.
And it swings, very, this life, with and without fibro, right? Because life swings for everyone, ups and downs are part of the “package”, whether you have been assigned this or something else. I do not think my life is any “worse” or “better” than anyone else’s, it’s just mine and that’s the way it is!
It is basically quite strange how one learns to live with all that fibromyalgia brings with it from both pain , lump in the throat, swallowing problems, sleep problems, aches and pains both here and there, icy fingers, headaches, watery eyes, stumbling, loss of strength in the hands, clumsy and uncoordinated movements, freezing or feeling too hot, involuntary twitching / cramps in the limbs, shooting pains in the head, neck or elsewhere, palpitations, exhausted and constant fatigue, post-it notes everywhere, etc. …
There is more: Sensitive skin, sensitivity, hypermobility, sometimes I sleep all the time – other times I am so tired that I do not know which leg to stand on and cannot sleep, the toothache-like pain that moves around the body – my neck, shoulders, hands, legs, back, knees and – worst of all – my hips .. They hurt sometimes so I think I’m going to go crazy .. Amazing how good I can be at ignoring things eventually! Swollen fingers / hands and feet, loose hands, numbness in the skin, dizziness, occasional nausea, a stomach that “lives its own life” (but maybe it does anyway?) And the urge to lie down to rest someone times .. suddenly and without warning .. Yes, most of it I can ignore in between, because I simply get better and better at finding strategies to make the days go by.
Some of the most challenging, for me, are these two things:
- One is what is popularly called “fibrous nebula”. A very good friend of mine tends to call me “the gang’s collective memory”, because I have always had something similar to autistic traits and photographic memory when it comes to remembering things .. And now it is not quite like that anymore. It affects my self-esteem, my self and my identity, I am somehow not quite me anymore! At the same time, it also affects an already frayed ability to concentrate. When you have both fibromyalgia and ADHD with attention deficit disorder as the most prominent feature, it is basically a bit challenging at times to remember what to AND focus.
I still remember an incredible amount of strange things, but everyday things are missed for me … all the time. Teflon brain is a fact!
- The second is the feeling of lactic acid in my legs and arms when I do any of the physical excesses, a feeling that comes quickly! Cramps in the thighs and legs are everyday food, along with the feeling that it is difficult to “start up” the body when I have been lying, or sitting, still for a while. Strange how some days I can run four kilometers, while other days I can barely bear to walk up a little hill – and there is often no warning of whether it is “like this or that”, the body lives its own life.
All of these things are common for people with fibromyalgia – and more – and eventually it simply becomes a “normality” because you turn to it.
I am a social being, a person who likes to be with many, a few and alone. I like to do ordinary things with my husband and children, go out with friends, travel, exercise and go for a walk. Like many others, I have several hobbies, many good abilities, and many dreams and hopes for the future. I have things I want and places I want to go!
Of course, people with fibro (and many other types of “hidden diseases”) also want to visit others, go out, go out to eat, go to the movies, take part in a snowman competition, sled and ski, go long trips, going on trips and traveling, exercising, working, helping with things and participating in all sorts of strange things .. be a person who is present for both husband and children, family and friends. Simply be social yes, that’s it is!
But this body unfortunately does not always want it, and it is the one that controls the shape and what we can handle. It is not easy to see or understand, neither for ourselves nor for all those who are healthy and fast around us. It is a sorrow to get a disease and / or a diagnosis, and in many ways I think that process and acceptance has come faster for me now because I have already lived with several other things for many years. Yet I can still often feel very much that I “should” achieve more than I do, not out of my own bad conscience but out of how I feel society and all the “healthy” people around me think I should achieve.
Even if you can not see my pain and pain and I seem healthy and uplifting, there is more happening behind my exterior than you can see and I am not lazy or giddy. The days you see me out are the days I actually manage – or manage to push myself – to go somewhere .. The other days, the days you do not see me out or you get annoyed because I do not answer, then I keep me at home because I do not work or have too much pain. Those days I do not want to talk to anyone, I have enough to cope with and exist. S equals is everyday life for people with chronic pain, I think.
I also believe that the sooner “people like me” realize and accept it, we will not have to wear ourselves out completely – for others and for ourselves. There is no one but ourselves who can take into account the “self”, and it is only we who can ultimately really focus on what we can do instead of stressing with all sorts of strange things that 99% are certainly not necessary .. I have come to the conclusion that it is better and clear a little with good quality, than to stay at home for several days, completely ruined, just because I on death and life should do what I thought everyone else wanted or what I thought was expected of me .
My life, my pains and my rules.
My MASTER, my feeling of achieving something important, being a good mom and wife (first and foremost), without a guilty conscience for anyone else.
The best tips I can give to others with the same challenges:
- Take care of yourself!
- Listen to your body!
- Do not put on too much – know your limits!
- Cut out everything that is not necessary and does not really give you anything either ..
- Find someone to talk to.
- Exercise as much as you can – pain is NOT dangerous !!
- Eat healthy and sleep well.
- Use positivity and optimism for all it’s worth…
- … Be grateful, every day, and enjoy everything you can and can do !!
The cards I was given today were not the ones I wanted, I did not want lemonade either, so then it will be juice!
The wonderful thing about such an ordinary everyday patient is that it actually passes again! I will get rid of both fever, nausea and pain, and life will go on mindre unless it was the case that this is a variant of my “new” companion fibromyalgia. For a brief moment last night, when my body was at its worst and I was really too tired to think sensibly, the thought roamed me; “What if this is NOT a tired autumn cold ?! Imagine if this is how it will be in the future, that the pain, nausea and pressure in my head will follow me ??? ” Dread and horror! I feel that it is simply irrelevant – so then it’s probably just a hint of the male flu, I think!
For me, it is simply not a choice to have it like that all the time. Driven inside me just have to search further, have to find other ways to deal with things. Whether it is more / different exercise, change of diet, vitamins, etc. – something must be able to be done! There are always opportunities, there are always new ways and things to try. Life is not a statically defined path and I refuse to give up!
It makes me think of this picture that has flourished in the Facebook world, about the invisible disease. About the pain, the thoughts and the disease / diagnosis I (and many others) hide inside. There are so many, so many, ordinary people – like you and me – that we pass by, greet, talk to every single day, who have a hidden illness. Cancer, epilepsy, diabetes, ADHD, anxiety, fibromyalgia or ME – we look for confusion right on the outside. No one can see or know what the sidekick is struggling with, we have not walked in his or her shoes.
My goal was to be able to go for long walks, both on foot and on skis, with my children, cycling and maybe one day jogging. Purposeful, persistent efforts have gotten me there, and the happiness is complete because I have even managed to get on the “dance floor” again with HipHop training once a week. It was I who had to take hold: Take hold of myself and my body. I who had to set my goals and I who had to work towards them. The bonus is unique: You get better health, better mood and fantastic nature experiences. Nothing happens before you start and you are the boss in your own life!