It’s been almost 8 years since I got diagnosed with Fibromyalgia. I had been suffering from it for about half a year when I sought out specialized help. I cried in my sleep because of the pain, I wore 6 braces to be able to work, and when I wasn’t working I felt dead tired and in lots of pain all the time. So I needed to seek help. And after some tests and examinations, my Doc informed me that he was positive I had Fibro. And that it would stay with me the rest of my life. And that there was no known cure at that time (still isn’t).
I just got married and my life as I had thought it would go fell apart. I also think me getting fibro changed me in ways my new wife couldn’t deal with and that it’s part of the reason she’s now the ex. I already had been diagnosed with ADHD, Asperger’s Syndrome and chronic depression in 2011/2012, so getting fibro added in 2014 was a tough pill to swallow.
It took quite a while to find meds that helped me get through the day. Shortly after my diagnosis, my then wife thought it better if I would go on sick leave while I was trying to find good meds to help ease my pain and discomfort. Little did I know that it would eventually lead to me not being able to work anymore. The energy I had used in the past to make up for masking my autism, I didn’t have it anymore. So the autism also became a difficult problem during work. So many stimulus around me that I got stressed over the smallest things. I’m combination with pain, it was a bad deal!
While on my meds, I tried specialized adapted work in a special work environment with a care taker present to support me. She gave me very simpl jobs to do, things that I should have been able to do easily. But I struggled and stumbled even if I did my stinking best! And I hated the feeling of failure. I cried every time that I got home. I felt I had lost my worth. I had always enjoyed working, bringing home a well earned pay check. I worked 40-50 hours a week at my last job and I had loved it. And the pay was rather good as well, after taxes and stuff, I had about €1800 every 4 weeks… And my wife had a paycheck as well, we were doing rather well. And to be honest, I do miss the situation where I never needed to worry about money! It’s one of my biggest issues now, next to my health, and it’s so hard not knowing if you can afford all the bills and have money left for food… 😔
What Fibro meant for me. Pain in my joints, my muscles and my tendons. My skin always was sensitive but I feel like it’s even more so since the diagnosis (well since before that, as it was one of the things that made me wonder if something was wrong with me). I have bowel issues, a “light version” of IBS, something which is associated with fibro, unfortunately… I need way more sleep these days than I did prior to the fibro. Before I could manage easily on 5 hours of sleep. Now I can still feel dead tired after 8 hours of sleep. I’m more stiff in the morning. And I gained weight (also because my job was very physically demanding and I felt bad so I ate more). And I never felt cold, except for my hands and feet (Raynauds). But since my fibro, I am experiencing cold more, and I hate it!
Days below 10 degrees are worst! If it’s wet weather it’s also very bad. When the temperature gets above 16 degrees and especially when there’s a nice warm sun, I experience less pain. I always loved summer, but now I also love it because it means a few months with less pain symptoms. But! Last summer we had a wet one, meaning less sun and more stiffness 😔. So I’m really hoping for a decent summer this year. Also because then I can enjoy a cold drink and a book in the sun on my balcony. 😊
I had to follow therapy after my diagnosis. It was part of the “rehabilitation trajectory” that I was in, as they wanted to check all basis for me to get back to work. And I wanted to be able to work again! I missed feeling needed. And I missed my paycheck. I did get a state income, but it’s way less than what I was used to. Back then, we still had my wife’s income so we never struggled. That started when she filed for divorce and got me out of the house. I used to have a netto income of about 25k. By all means it was not huge, but it’s after taxes so I could live very well. These days my income is 18k after taxes and… I can’t split/share the bills so yeah, it’s a big difference. It still is “a lot of money”, but with our inflation being almost 7%, I feel like my bills grow waaay faster than my income does. And while I try to keep the costs low, there are a few luxuries that I get myself as I feel they help me in many ways. But! Back to fibro… 😉
It has been a long road and unfortunately still no chance of recovery. Although the government thought that the “rehabilitation for fibro patients” was like rehab for addicts or something. I have needed to explain to them several times that it did not end the symptoms, it did not end the pain and discomfort, it thought me how to cope better. I still need my Tramadol, I still need a small Oxycodon at times just to get through the day. And yes I exercise and walk with Arwen when I can. But I do those things in my pace, when my body allows and afterwards I need rest to recover from it. With a job you can’t just say “ah I’ll do less today becaus I’m in pain”. Well, I tried that and it didn’t get my anything positive!
These days I try to manage my pain with my routine. As I never know how much pain I’ll be in when I get up, I can’t say in advance that I want to do more or less. I just try to follow my routine. I’m active at the gym, I rest. I walk Arwen, I rest. I ride my hometrainer, I rest again… Without those moments of rest, I could never manage. Without my painkillers, I could not manage it either. But when it’s been enough, I can stop. When I have some more energy or is my pain is lower, I can do a little more than planned. Yes I have my routine but I learned to adjust it in small steps, and I learned it the hard way!
I stumbled. I fell. I cried myself asleep when the Oxycodon wasn’t doing enough. I been up all nights because I could not get comfortable. Once I even walked Arwen at 3 AM because I needed to get out of the apartment! I was in pain and nothing I did worked. So I walked Arwen to clear my head. Dealing with chronic pain is awful. It’s a neverending story and “learn to live with it” is something they tell you with ease but they never inform you on the “how to do that”. It’s something you need to figure out by yourself. And when you break a leg, people are understanding. It’s only a few weeks of pain and discomfort, they see your cast and crutches and after a few months, you’ll be as good as you were before. But fibro never leaves. Fibro is invisible. What I may be able to do today, may not be possible tomorrow. And people find it hard to deal with that. Both the ones with the fibro as their friends and loved ones around them.
As a fibro patient, you don’t want to complain all the time. But more than once, you’ll need to cancel plans at the last minute. More than once you’ll need to leave a party early because of it. More than once you will be suffering when with others and not know what to do with yourself. Should you say something so they know? But they already know, right?
For those surrounding you it can be difficult as well. Should we ask how they are? Won’t they get tired of our asking? Will they cancel again? Will they be able to do this or that ot will it be too much? And some people may even turn away because they find it too much trouble to deal with. Let’s just hope that they will never be affected by a chronic pain illness, because people turning away because of “the hassle” hurt your feelings a lot. Because you feel it’s your fault, even though the illness chose you. You never asked for it. You didn’t invite it in your life. It overcame you and you need to deal with it. And having people in your circle that treat you like that, yeah, those hurt more than the illness might do.
I try to be positive! Even with all my mental and physical health issues. I suffer from my depression. It really drags me down and makes me feel things I never want to feel. I suffer from my nightmares and anxiety, making me scared at times to even walk Arwen… Going only for a short walk becaus I want to be back home asap. But I want to focus on the good things. On the things I am able to do despite the pain, despite the bad body I’m living in, despite people not believing in me… I really try. Some days I succeed, other days I just suck hard! Jup. I’m that hard on myself. No kids gloves, just me, my bad body, my different wired brain against the world! And every day I achieve a goal, no matter how big or small, is another thing I can be proud of! 💪🏻
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