I never usually post on anything like this, and honestly, I don't know what I am actually looking for by posting but I feel at a complete low point at the moment, so here I am. Please bear with me as I just go on what will essentially be a stream of consciousness about my life.
Since I was a teenager I have had back pain, neck pain, random pain like childhood growing pains in my arms and legs, insomnia, fatigue, difficulty getting up in the morning beyond just being cosy, waking up feeling more tired than I did going to sleep, etc. When I got older, around 2017, I began hunting for a medical diagnosis but doctors kept just concluding that the answer was low vitamin D or depression, and then they'd prescribe me extremely high dose vitamin D supplements which never made any difference or anti-depressants that I never took because I knew my depression was situational not psychological or physiological.
In 2022, I spoke to my dad about it because he has had various health issues his whole life, including fibromyalgia, and he said to make a new doctors appointment and ask if it could be that. So, I did. I came with a whole written list of symptoms so I didn't forget anything and was then put in touch with a chronic fatigue specialist, who I was so fortunate to have. She listened to everything, acknowledged and agreed that the depression sounded situational and not something medication would fix, she ran a whole host of blood panels to check for any underlying conditions, and finally concluded that I have fibromyalgia. It was liberating, I finally felt like all the years of advocating for myself made a difference. That it wasn't all in my head.
I managed to get a remote job that was four days a week not five and had flexible hours and that made such a difference to my energy levels. My severe crashes reduced from once a week to once a month because I was able to monitor my output and prioritise what my doctor called 'green activity'. On a bad day, I could just curl up on my sofa and work in my PJs. I could speak to my boss and say I was struggling and might only be able to do a half day. But then, because I found a way to manage it, I began to think 'maybe I'm making it all up.'.
Began to feel like an imposter, instead. I read these forums of people in wheelchairs, people in such debilitating pain that they can't even get up to go to the bathroom, people in such worse shape than I. And I think about how I pushed and pushed for a diagnosis, and so maybe the only reason I got diagnosed with fibromyalgia is because I said I thought I might have it and not because I do. And then I have a crash day, and I think, oh maybe I really do have it, until I feel better, and the cycle starts again.
But now, we're in the process of buying a house and living with family for the time being, and even my green activity feels yellow because of the pressure and baseline stress I have at the moment, and so my yellow feels red, and my red just feels impossible.
I feel like I have been in a fibro crash for months. I feel like I can't cope anymore. I am in so much pain all the time, and I am exhausted. Mentally and physically. But there's nothing I can do to change it. And then I don't feel like I can express this to anyone other than my husband because nobody else gets it. If I do try to say anything to anyone else, all I get is, 'Yeah, I slept badly too last night.', or 'It will all work out.', or worst, 'Sometimes you just have to get on with it.'. And I don't want to talk to my dad about it because he has it so much worse than I do and I hate feeling like I am complaining to people who are in a worse place than me, because that's just not fair. I know my dad would give anything to live life the way that I do.
So, I don't say anything.
But then I look back at this time where I managed it, and honestly, that's all I was doing. I was managing it. I wasn't actually living a life I wanted. I would cancel on seeing friends, I would stay inside on a beautifully sunny day instead of going to the beach because even that used too much energy. I spent all day almost every day inside my flat, and I felt miserable because I wanted to go out and live my life. I have thought about training to become a nurse, or volunteering at an animal shelter, or anything like that, but I never do because they want reliability. And I am simply not reliable. I am not even reliable in my fully remote, four day a week, flexible, laptop-based job.
And I hate it.
I'm not designed to live my life within four walls. I'm an introvert and a homebody, sure, but I also want to go out and live and thrive. I want to make a difference, see people, and touch grass. I want children and pets, and a whole smallholding. But how can I do all that when some days I can't even make it out of bed?
How am I meant to feel fulfilled, when some days I barely even feel functional?
That's it, stream of consciousness over. Thank you for reading, if you made it this far, and thank you for letting me rant. I honestly don't know what I want to get from this, but maybe, if nothing else, it will at least help someone else feel less alone...
?
With Fibromyalgia you don't live...you simply exist.
What ifs and doubts 
Struggling to keep up
"Simple ways to manage pain"
Written in one of my quiet, thoughtful moments - mainly feeling alone and very lonely
