So as the title suggests over the last few days and definitely the last 12 hours I have been inventing a fair few new swear words to express the extent of the pain that is hijacking my body. I've screamed. I've cried. I've sworn. I've taken all my tablets (gabapentin) and extra pain killers (cocodomol and even the dreaded ibruprofen). I have a hot water bottle on my thighs and a tens machine pulsing away on my back and yet I still am in pain. I don't want to be touched but need help and just wiggling my toes sets me off into a diatribe of ugly curse words. I phoned the out of hours doctors but all they could say was that there wasn't much they could do. Cue more crying and curse words.
But today wasn't supposed to be like this at all. Well any day is not supposed to be like this according to society and I would very much love that. But you see today I was supposed to be going to Turkey on holiday with friends. When it was booked my ME was much more fatigue dominated. Not that it isn't still but now there is the all consuming pain that has left me wheelchair bound too. Yes overwhelming fatigue is debilitating enough but I could still care for myself a lot more. So after going to Greece and needing a wheelchair to get onto the plane being able to go to Turkey has been a doubt in my mind.
I looked at the resort and to be fair it did look very wheelchair friendly with lots of ramps and flat areas but it was far from the town, which could only be accessed by bus. Something tells me Turkish buses wouldn't be very wheelchair friendly. Nevermind taking the bus twice a day for 2 weeks just to be able to go eat dinner. Plus if I feel asleep during my meal it would have been a nightmare to get me back.
But more than the travelling and the wheelchair logistics it was about needing to be cared for a lot more. As in personal care. Would my friends really be comfortable helping me bathe, washing my hair, get dressed or even helping me on and off the toilet when needed? Not really. Nor would I be comfortable with them doing it. Sometimes it frustrates me having my Mum do it. What's more this was their holiday. They deserved to we having fun and going out exploring not looking after me. I couldn't put that pressure on them. The guilt that comes with putting others out just by me having this condition is already enough without ruining a much needed holiday. My friend even admitted that she would be a rubbish carer. So that was that one out of the window.
Yes I did manage to get to Greece not so long ago but like I have said I know the place, I know the people. I have fallen asleep in the restaurant (right next door) and they don't get offended. They help me out and then ask how I am the next day. They don't try and ply me with alcohol because they know it will make me more ill. Even when I'm over here I get messages of support and well wishes. What's more I go with my parents. So they are there to care for me. Yes I want them to not have to and to be able to enjoy their holiday but at least the pressure is off a bit because they don't have to work or cook or clean.
Some people will think it's strange goinh on holiday with your parents in your late twenties but that's the way it is. It can do us good as a family. Especially as we have become so reliant on one another. I'm just grateful that I can go away with them when my health permits. That we have a great relationship. At the end of the day if I was well I probably wouldn't be going on holiday with them or maybe not at all as I'd be out there working, working working.
Anyhow enough blogging distraction techniques. I am going to try and get some sleep. Think it will be the only way to really shut off this pain.