Every day I struggle in numerous ways.
My health is so bad that I have to force myself out of bed as even after 10-11 hours sleep I am so utterly exhausted and fatigued that I could just keep going back to sleep, but I have to get up to take my medication so I use that as a reason to get up. If I didn’t have that as a reason to get up, honestly I never would as I have nothing else to do all day and no reason to bother getting up.
It is very hard work getting up as I can barely muster up enough energy due to my chronic fatigue. It feels like I haven’t slept in weeks all the time even after waking from a long sleep.
I lay there for a long time after waking before forcing myself up. This is the hardest part of my day.
When I get up and have washed and come downstairs, I don’t move from my chair until bedtime. My day is incredibly boring and painful.
Before the Fentanyl, I wouldn’t leave my bed as I physically couldn’t as the pain was even more debilitating. I would scream and cry 24/7 as I couldn’t sleep or get comfortable and the pain was off the scale in severeness. With the Fentanyl at least I can get out of bed which I couldn’t before. I can’t physically do anything nor walk far or stand long, but at least I can sit downstairs.
I still have incredibly severe pain but I am not screaming in pain and can sleep and get out of bed at least. I will sadly end up back there one day in the near future as the Fentanyl has a few issues, such as adding to my chronic fatigue quite severely plus the withdrawal gets worse.
My doctor says there is nothing else for me after this as the NHS won’t prescribe the painkiller that works well for me (cannabis), which you can only get on private prescription which I couldn’t afford as it is the equivalent of many months income for one month’s supply!
The entire day I have to fight with myself to stay awake whilst I’m sat down as my chronic fatigue is so severe along with the opioid fatigue. I often fall asleep whilst sitting down in my chair during the day. The fatigue is like you haven’t slept in weeks and have run a marathon every day.
This plus the severe pain that hurts so incredibly much that I can’t walk very far nor stand long. I have to use a walking stick all the time and a rollator if I go to the hospital or doctor and that is hard work but I can’t afford a powerchair.
The pain is so incredibly high all the time. I wriggle around frequently through the entire day to try to get a comfy position but that is hard work on my fatigue and hurts.
I still often break down crying due to the severity, but not like before the Fentanyl as that was so severe and unbearable.
For the last few months, my shoulders and neck have started hurting severely and much worse than before, plus they have also become very stiff to the point I can barely move them. Some days aren’t as stiff as others. This seems to be a new issue that the doctor doesn’t want to talk about even after bringing it up numerous times.
My conditions are very severe and what I can do is almost non-existent. I can barely move anymore because of my conditions. I am also very weak now.
It all became very severe rapidly. The pain and fatigue got worse over a long period of time, but then it suddenly got all very severe over a short period of time. I used to try the physio stretches many times only just a few years ago (which didn’t do a thing), now I can’t move into those positions anymore and am so much worse.
I get no relief or time off from the pain or fatigue. It is every second of the day. Some days are much worse than others, but I don’t have good days. They are all horrific.
Then there is the financial struggle I have.
I get £300 a month total income from disability. I don’t qualify for the other two benefits that are available as the government says I don’t qualify and they won’t budge on that even though I can’t work and live on such a tiny amount.
They don’t care that this is the only income I get and I couldn’t afford rent anywhere in the country on that so I am happy that I have somewhere to live!
I live on under 70p a day for food which is one meal of plain oats and UHT skimmed milk for breakfast/lunch combo around 2pm and then a small hot meal around 6.30pm. I am hungry a lot of the time.
I also have to pay for my medical prescriptions as I don’t get them free as my disability benefit doesn’t allow that!
I have a lot of things I need but can’t afford.
There are some things I would just love to buy for my health but can’t afford either. There are health supplements that some people get relief from symptoms from that I would love to try but I can’t. Another thing is a shiatsu massager to massage my painful areas but can’t afford that either.
When you are in severe pain and severely fatigued all the time, things that give minor or temporary relief are amazing.
My website also costs money to keep running and I don’t earn any money from the site, but my website is my passion and the only thing I have in my life that I love and enjoy doing.
I can’t work due to my chronic illnesses so I have no other ways of earning money.
I don’t have any relatives as they all died so I don’t get help from them nor gifts for things like birthdays and Christmas which of course I wouldn’t ever expect, but just stating this to show that I can’t get these things as a gift either.
I can’t go out so I am in the house 24/7 forever which I hate so much.
I can’t get a wheelchair as I don’t have the strength to wheel it, so I would need a powerchair but this is thousands of pounds that I don’t have.
I obviously can’t afford a car either so I can’t drive to get out for a change of scenery.
This is the only way I would get out of the house with more freedom, but of course, this won’t ever happen as I simply don’t have the funds.
Before this got bad and I could work, I used to travel which was my passion and I loved it so much. Even then I couldn’t do much or walk much, but I would be in another place with a change of scenery. I would love to do disabled travel blogging, but the funds won’t allow that.
I feel like a prisoner of my house and body.
I can’t leave the house nor afford the things that would allow me to get out. I can’t stop the pain or fatigue of course nor afford to buy the things would help relieve them a little.
I hurt so much that I would love to have relief. My pain will only get worse and my fatigue gets worse as time passes.
I struggle every moment of every day and I can’t even get out to escape these four walls.
In a dream world, if I had the money I would get massages regularly as they make me feel amazing and help the pain, albeit short term it is a relief. I would have a car and drive to go places to just see different things and travel blog!
But alas, I am here in reality. A lonely painful, exhausting and boring reality where I struggle with everything every day.
I have a support me page with ways people can support me for free or at cost if you would like to help but of course this is not required!