It's almost 3am here in the UK, and for another night I'm sitting on my sofa trying to cry/hyperventilate as quietly as possible so my neighbours don't hear and think I'm even more crazy than they probably already do! 😖😫

It's becoming more and more obvious that my health is going downhill, I can barely function and it's SO. VERY. FRUSTRATING!!

3 years ago I was in relatively good health, overweight, and had a drinking problem (sober for over 3 years now barring one short relapse over a year ago). Then in 2017 I suffered a completely prolapsed disc in my lower back. An MRI done about 2 months after - I delayed seeking help thinking it would get better - showed that my vertebrae surrounding the prolapse were bone on bone and disintegrating.

Almost straight after that happened I fell ill with gallstones, however the surgery was unsuccessful and actually left me with a serious post op infection as well as cellulitis in both my legs. I'll try not to go into too much detail, but basically my legs/body up to my waist ballooned with the excess fluid, I could barely move, couldn't eat due to the pressure on my abdomen, and lost all my skin below my knees. I had a very bad fall early one morning and was trapped on my bathroom floor for 3 hours before paramedics could break into my flat.

The fall actually saved my life, I was actually going into organ failure and had double pneumonia and pleural effusion when I was admitted, I was later diagnosed as also having a brain stem injury. As a result of these issues I have been left with partial paralysis, epilepsy and speech problems. The epilepsy was uncontrolled for a long time and I had several more falls, one particularly severe one caused further damage to my spine and I now have 3 shattered vertebrae.I am unable to have spinal fusion surgery due to the amount of scar tissue in my abdomen, as well as my general health being so poor.

I was initially treated with Codeine, then Tramadol, and in July I was started on Fentanyl patches with occasional Oramorph for breakthrough pain. Despite this, it's become obvious that I am NEVER going to be able to do things I took for granted just a few years ago! Last week I got a shopping delivery and it took me over an hour to move the ~10 bags from the hallway into my flat. I then had to just leave them, I was in such incredible pain that I wasn't capable of even putting things into the fridge! Tonight I tried to mop my bathroom floor, a tiny area about a metre square. Due to heavy rain in my area, and living in a very old building, my toilet backed up and overflowed and I needed to try and clear up some of the raw sewage from the floor before the plumber comes tomorrow morning. Despite the mop bucket having perhaps 3 inches of water/bleach in it, and being able to lean on the doorframe whilst I mopped, again I was left in agony!

I have a cleaner who is wonderful, she is almost more like a carer and will do things like put laundry on, wash my dishes, put away shopping. However I'm always left feeling embarrassed and like I should be putting more effort into doing things for myself, up until this last week I really believed that I WAS capable of doing these things if I really tried, but I know now that isn't the case 😓 I am really frustrated and frightened since I'm single and live alone that before too long I'm going to lose the ability to do what I can do, like cook basic meals or use the toilet on my own!

I just can't see a solution, I'm incredibly lucky compared to a lot of pain patients that I have access to the level of pain relief I'm already on and although I really don't want to increase it so soon after being put on Fentanyl, the Oramorph barely takes the edge off the severe pain I get for any exertion whatsoever 😡 I'm due to be assessed by the pain service in my local area as my GP has recommended I'm on high dose, fast acting Fentanyl rather than Oramorph for breakthrough pain, but I'm still waiting because I need to speak with a surgeon/pain consultant rather than the nurses who run the clinic.

I'm just so very, very frustrated at how quickly things have gone from bad to worse, I never imagined that it would reach the stage where now I can't do such simple things for myself - I can't even stand up for longer than around 5 - 10 minutes! I had hoped very much that soon I could move house to somewhere it would be easier for me to get around, in my current place I can't use the shower safely, and I can't even leave because of the steps down to the street. I had hoped that I could get a dog, or at least a kitten, so I could have some company, but now I don't think I'll be able to care for them properly. I'd also hoped to get a car since I now qualify for one under the Motability scheme, but now I'm worried that I'll need the extra income from my PIP for further home help if I continue to lose my mobility. It feels like everything I was hoping for is slowly becoming more and more impossible and I'm just going to be left trapped in my gradually failing body, while my brain insists that I'm just not trying hard enough 😞😞😞