Guest Post by V from the USA
This was originally posted to an online support group. V granted her permission to share it here. She has been able to put this part of her life story into words that so many of us find hard to express, and I thank her deeply for sharing her words with you too.
It’s about 1:30 a.m. and this is about the time where I start to feel despair about everything in my life. I just can’t seem to adapt to the isolation and lack of a routine or purpose. Also, I can’t seem to find any pain meds for my chronic pain. I have been in physical pain for so long.
I know this post may seem disjointed which is apropos considering how I feel.
I AM so tired of spinning my wheels…Along with MCS I have so many other medical issues…non terminal that I know of but still…I have asthma and allergies.. I can’t be around dogs or cats, the weather determines my breathing status for the day and my physical mobility.
I can only eat about 10 things and it’s exhausting to try to rotate these foods and I spend excessive time trying to plan. Even planning a rotation I still get itching throat and sometimes a swollen throat with some of the ten things I think I can eat…it’s horrible to start eating and not know how I will feel ..
The MCS..the ruler of my life.. I can’t stay in or go out ..I can’t have anyone over or go visit anyone. I do manage to go to the grocery store and had managed to go to a couple of other places but after last week it seems like I won’t be doing much of either at least for the immediate future.
I had back surgery and don’t think it was as successful as most .. the acute problem lessened but I developed more problems… I recently sprained my knees.. one worse than the other and still have issue…stairs, walking, lying down..
My feet are so very sore I don’t know why.. doctor’s tell me it’s aging and weight…but they hurt before I was this age and when I wasn’t overweight.
I HAVE so much back pain and no pain meds that I am not allergic too..I have many other medical issues and it’s so hard to manage.
I have no immediate or extended family and friends. Luckily, I have met some wonderful people here…and I am grateful, however, it is rare that I hear a human voice or share a face-to-face experience with anyone.
I am tired of not knowing what to do during the day.. I am stunted by MCS and pain…physical and emotional. I want to pick up the phone and talk about a tv show or the weather or something but there is no one to call..the silence is also killing me.
I AM aware that I have many blessings and try to go with that but lately I feel like I had (or thought) that I was holding on and that if I didn’t back slide there was a possibility that I could reverse or not make worse my issues…
I mean I have issues with sleeping (sleep apnea and all masks I have reacted too) I have asthma which is not controlled very well, I can’t really eat with peace of mind and have had so much testing, I have pain everywhere..places I didn’t thing could hurt, my back, my hip, my knees, my feet… mobility is an issue..so no sleeping, eating, moving, and the isolation..
I feel like I’ve crossed that line of decline..maybe I’ve been there a long time… on a decline..
I do feel that I can’t WILL myself out of his any longer.. the brain fog, the horror of not being connected really to anyone or anything. .the pain of reaching out by phone to organizations, people and exposing what I need only to be turned down. I am ok with being turned down.. I expect it.. but the ones that give me a glimmer of hope and never come through is painful.
I TRY to distract myself.. read, color, movies, sometimes walks, whatever I can manage.. but lately it doesn’t seem to work.
When I stop what I am doing I just think of what is the point of all of this suffering..
I am sorry to burden anyone here…I just know it’s a safe place..I can’t find phone counseling..even when I have…the therapists just don’t seem to get what I feel.. I don’t fit in.. I can’t stand the physical and emotional limitations…
I just don’t know what to do anymore.. it’s just exhausting to just be existing..
I think one person might miss me when I am gone, but mostly will be relieved for me and for them. I’ve live a long while and I can’t believe I am this alone, isolated..without medical help or compassion…..maybe I am overly sensitive, but it is how I feel.
Thank you for reading. I hope I have the courage to leave this post up. It’s so bleeping pathetic.
((( ♥ )))
Sharing our realities and lives is difficult when they are different from the lives we grew up imagining and planning for. We don’t have role models on tv or in the movies, or even in books.
Finding ways to stay emotionally and mentally healthy when we are isolated with socially inconvenient disabilities, in pain, without access to basic needs and services is a challenge that far too many of us face. The online support groups are life savers, but they are not enough. We, as human beings, need practical supports and services.
Please help us find ways to bridge the social and service gaps.