I've had a really rough 10 years. I managed to injure my spinal chord by hyper extending my back and I never recovered. I have hypersensitivity, so if someone touches my back very lightly, I go into extreme spasms. I have trouble sleeping because if the covers or sheets touch my back, I wake up in agony. I thought things were improving very slowly until about 2 years ago, but then something changed and things got much much worse. I was stuck in bed for about 6 months, alone, and nearly immobilized. At some point my arm felt like someone was trying to rip the muscles apart, at another point it spread to my neck and face, and later my legs started hurting so intensely that it would wake me up and I was unable to walk. That last part was the scariest. I apparently broke my foot while trying to stand up and didn't know for well over a month because my body's pain receptors are so screwed up. I was so scared that I wouldn't be able to walk again.
Things have improved a bit. I have a great doctor, but he told me finally after nearly a decade that this wasn't a problem that would improve in time. He said at any time I could have a flare up and things would revert back to their original level of pain (which was pretty much a year and a half in bed). This was a shock to me. Of course I knew intuitively that this was the case, but part of me held out hope that one day everything would go back to normal and I could live like a regular human being. I've been wrapping my head around the finality at this point, and grappling with what it means for my life. I'm sad, I'm afraid, I'm lonely, and I'm aimless.
There have been very real consequences this time around. I live in a relatively new city (after ~3 years) and had a few sort of close friends, mostly from work. As an adult (in 32 now) it's hard to move somewhere and form the kind of bonds that I have from other times in my life. None of my "friends" here knew me before I had pain, so they don't know what I used to be like (what I'm "really" like). Nearly all of them essentially stopped talking to me, no one visited, and people started trying to tell me what I should be doing differently, despite having zero idea what I'm going through. I had one very close friend who was helpful for a while, but then he moved and our only interactions were over the phone. I've become agitated, easily annoyed, and a total emotional mess. For the people I used to spend time with, this just wasn't worth it to stay close because of the interactions they had with me.
My boss is very understanding, and I work from home most of the time on my schedule (I can't sleep regular hours). My colleagues and former friends are not. One of them told me that I shouldn't be involved in a project because I couldn't spend enough time on it (not true--I have nothing but time for work, just have to do it on my schedule). Last week another colleague who has been nothing but cold to me told me that she hated that she perceived that I always ask for pity. I was shocked. I asked her what she meant and she cited examples where I apologized for having to sit in a meeting when others were standing, where I missed meetings, and made others accommodate my unpredictable schedule. I explained to her that I apologize out of politeness because I feel weird in the situation, and the other stuff I simply don't have control over!! In the mean time, she has told me repeatedly that everything was psychosomatic and that I wasn't doing everything I could to help myself. Of course she has no clue what I do and don't do. Other times she has asked me what meds I'm on in front of my colleagues. I told her that I don't want her pity, and that she has absolutely no right to ask about my medical situation without me prompting it, particularly in public.
The suggestion of psychosomatic causes is so hurtful!!! I don't remember what it's like to not be in constant pain at this point, so I start to second guess everything. Of course I know that this is unreasonable, but I hate that she puts me in the position to even have to justify these things to myself. I hate it!!
There are lots of other incidents and issues...too much to write here. What is hurting me at the moment is that I've essentially lost all of my friends. My family feels terrible for me, but they can only sympathize, not empathize. My colleagues clearly can't even sympathize to a certain extent, and when they try, they cross boundaries I'm not comfortable with.
I feel so alone, all of my relationships crumbling around me. When I got hurt I was in a serious relationship, but it ended within a year and a half because I was changed by the pain and couldn't do the things I used to that made her love me. I just wasn't that person anymore and I was a helpless slave to the circumstances.
I hope someone out there has some advice or can commiserate. I've seen every doctor, pain specialist, and pain psychiatrist I could, and I'm doing everything I can to help with the physical, psychological, and emotional aspects of my condition. But it's hard. Maybe you can give me some insight into how you make things work in your life... It would really help me right now.
My apologies for the length and tone of this post. I just needed to get it out and hope someone will read this and have something to say....
All the best to all of you.