Dear Reader,
Please read the entirety of this. I am sure that you will find it interesting (I have Asperger’s so please be as understanding as possible, in case it is difficult to interpret).
“Agliophobia” – I live in fear of pain despite living with, often debilitating, chronic pain and disabilities.
This is a begging letter. I am begging for your help in any way shape or form, so please please please read on.
At the age of 30 I had x-rays which showed I have two worn hips and three worn spinal discs. As the years go on – things get worse, too which point I now suffer with the following: –
Both hips need replacing due to excess wear
Both tensor facsia latae’s are too tight
3 worn discs
Coccydynia
Both knees need replacing due to cartilage tearing and separating from the femurs and tibia’s
Both kneecaps are worn and not tracking correctly
Both feet have collapsed and have several other problems which cause severe pain
Both Achilles tendons are too tight
I have arthritis throughout, including both hands & wrists (when not wearing strong magnetic bracelets, I cannot even hold a biro)
I also have fibromyalgia
As a result of almost 25 years of chronic pain, I have developed CPS (chronic pain syndrome), which cannot be treated.
Most people would happily have surgery. My GP suggested 2 new hips and 2 new knees, but another specialist says no point until my feet are ok because collapsed feet affect the geometry of the other leg joints. Feet cannot be fixed.
My biggest fears are Agliophobia preventing me from undergoing surgery and also very bad past experiences when coming round from general anaesthesia. I never wish to have those experiences again.
I have been hospitalised twice due to having stress induced blackouts. Physical stress that my body is enduring.
I have been told by different people in the medical profession that there is nothing that they can do to help me. I was even put on morphine at one point and it did absolutely nothing for the pain.
Years ago, I smoked canabis. It didn’t help. I have tried CBD oil, which also did not help.
Understandably – I scored practically full marks from Anxiety & depression tests, so now have to take the maximum dose (200mg daily) of sertraline and 50mg Propranolol & even that is barely keeping it under control. I still have frequent anxiety and panic attacks, which cause uncontrollable yawning and dry retching. And have quite severe social anxiety. I haven’t entered a public building for over 3 years and not even made an appointment to see my optician, despite having had 3 reminders from them.
If my life was controlled by a switch, I would’ve switched it off several times over the years (Agliophobia prevents me from doing anything to hurt myself).
My amazing wife and beautiful children are the only things that make my negative thoughts less frequent.
Up until the first covid lockdown I was self-employed with a computer repair/HiFi sales shop. I still rent the shop (money coming out of my disability payments) and still intend on reopening it as a printing services business. Will it happen? I don’t know.
For the past few years, I have only kept the shop for my sanity. It gives me something to do during the days. Ok – it causes a *LOT* more pain in my feet, but I have been living with that for several years now anyway.
During lockdown, I was spending money on gadgets and hobbies to keep me from getting lower and lower into depression.
I like 3D printing and messing around with home automation as my main hobbies, but I can no longer afford to sustain the spending to keep me occupied.
We are currently living in a rented accommodation (which has recently been sold & the new landlady is not very accommodating), which despite having council grants for stairlift, ramps etc.… it is far from being an ideal property for me to spend the rest of my days in.
My relatives and friends say we shouldn’t be here. I need a reasonably sized bungalow, of which there aren’t any available to rent.
The rent on our current home is difficult to manage as it is.
The way that all of this affects me personally is the least of my concerns. My main concerns are my family. The moment I stop being self-employed, I will lose certain financial benefits and will be expected to seek employment. Under the current government schemes, there is no such thing as permanent disability payments. I have to go through the overwhelming (for me in my condition) process of reapplying for benefits every three years. My most recent resubmission of my claim has so far taken a year and counting on them making a decision.
So, here’s the thing – if anybody could find it in their hearts to make me and my family any kind of donation, it really would have a major positive impact on our lives. Both physically and mentally.
Even some emotional or inspirational help or advice would be appreciated.
I said to my occupational therapist that the council should build us a large bungalow set in an acre of garden, in the middle of nowhere Haha That is extremely unlikely to happen.
My car has recently been written off, so i now need to save up for a good replacement that will suit my needs of powered wheelchair and/or my massive mobility scooter.
I do hope that you were able to take the time to read this word for word. I would really appreciate that.
Much love and respect –
Chris.