Hey everyone,I hope you're all as well as can be, it hurts to think that everyone here is in constant pain, but I hope you've all had a good day and if not that tomorrow will be better.
This post might be a bit long and I'm sorry, I just feel like I need to talk about what I'm going through and noone I know understands, not even a therapist or my family members, and I'm grateful because it mean they're not suffering with this, but it's hard feeling so alone in it.
I don't normally post as I'm a bit socially anxious, lol, and because I mostly get negative responses from people I know when I talk about fibro, but I'm feeling very lonely and just really struggling. This might be a bit of a rant and I'm sorry. Feel free to skip🙈
I'm 34, I was diagnosed with fibro in 2018 but the pain started in 2017 and began so intensely I had to quit work for 6 months before I was able to return for a few months (then quit again for months, return for a few months, quit again for a year, return for a year, and then quit again a year and a half ago).
Because I can't work for so long at a time, or regularly when I can work, I've had to move back home and live with my mother who is really not understanding or empathetic and really just wishes I didn't have to move back home and that didn't need help and she makes it clear. Well not really clear, but passive aggressively "clear" and I'd rather her just be upfront instead of act the way she does lol. This isn't to talk badly of her, but the fact is it really impacts me in a negative way and has made living with fibro and dealing with all the losses it's brought so much harder.
I spent 5 years with hope every day that is wake up one day and the fibro would be gone. For good. Friends telling me it was in my head and I'd talked myself into being sick and could talk myself out of it didn't help (btw who would talk themselves into being sick? I spent my life being positive, believing I would have a happy and healthy life with a successful career and become a wife and mother and travel the world etc). A year ago when I'd been positive and hopeful every day (because I really was positive and hopeful! but also people kept telling me that would make me better) but unable to work yet again for months, and couldn't even walk to the end of my street and back (my street is 4 houses long lol), I accepted this might be my life now.😕
Acceptance actually helped me mentally deal with everything. I realised I may never have my career back, or may only be able to work sometimes. I stopped planning for the future because all of my ruined plans and dreams were getting me down and I'd started feeling suicidal. I started thinking realistically and trying to be grateful for any moment in each day I could enjoy through the pain and other symptoms, and for the little things I was able to do in a day, even if I only managed to shower which was super hard, without thinking about the coming days/weeks/months/years. Previously I had been thinking every day about the rest of my life and how I would handle being in pain every day when one day was too much for me. I started focusing on thanking God for the little moments of relief and enjoyment, even though I'm never pain free or feeling completely well.. like my time at the sauna where I find momentary relief, or the times I'm actually able to leave the house and see my sister, nieces and nephew and how much they make me smile even though my face is killing me after..lol.. or just having my dog next to me when I wake up and can't move and feel like I've climbed a mountain and been steamroller in my sleep..🙈
When I talk like this and explain how I feel or what I'm going through I start to feel extremely guilty because my once closest friend who I no longer talk to told me that when I tell people how I feel or what I'm going through it brings them down and makes them sick and they told me noone wanted to be around me because I'm so negative. I do my best to be positive and make the people around me feel good and I didn't realise that sharing honestly when people ask me how I'm doing or what I've been up to made them feel so bad. I didn't think that being honest meant I was negative. And on a side note, I don't think they're feeling as bad as I do every day, but apparently I bring them down without meaning to 🙈 so I've learnt to isolate myself and stay silent which I didn't think I should have to do but now I feel guilty when I talk honestly😕
I'm struggling with just being in pain every moment of every day and the thought I try to avoid that I will be in pain for the rest of my life. I'm struggling with guilt for being debilitated and feeling like a waste of space, which I know we all are not, but I can't help feeling that way. It might be different if the people I knew were more understanding and caring? I'm struggling with grief over the loss of every goal and dream I ever had, especially my career and being a wife and mother. I don't think anyone with fibro should feel guilty or anything about being a wife or mum that may struggle because of fibro, but because I'm still single and childless I would feel guilty purposely becoming a wife or mum knowing that I know I wouldn't be able to give what I should to my husband and children because I got fibro before doing those things. I'm struggling with being stuck at home and unable to do the things I want to do, and being unable to enjoy things I used to enjoy because of pain (and would still enjoy but can't becasue of pain). And I'm struggling with feeling alone and misunderstood by those closest to me. I also live with my almost 19 year old brother and while he's completely healthy and fit my mother waits on him hand and foot so that he never even leaves his room except to use the bathroom, while if I ask for any help at all she reacts woth anger and guilt-tripping and it's gotten to the point I no longer ask for help but just suffer because of rather go hungry or be unable to make my bed than deal with her reactions to my requests/need for help and the guilt, anxiety and shame it brings me.
This has become super long and probably depressing, so I'll leave it here. Thank you for allowing me to vent. Sorry if I did bring anyone down. I know some have it worse, but I just really needed some help today dealing with all this. Fibro sucks and I'm so sorry everyone here is going through similar stuff. God bless