Small Update

Today I was meant to be going for a hospital appointment for my hip. Sadly though it didnt happen. The consultant rang me to say that not all the CT scan results had got back to him so he didnt want to drag me all the way out there to only give me half the information. So i was pleased they rung just annoyed were nine the wise for whats going on.

The lump in my mouth has become rediculously large. Its now bigger than a golf ball and i can barely eat anything tyat cant be sucked or anything that not liquid. Have to wait another 2 weeks before i even get reviewed let alone operated on.

With regards to the housing situation, well thats stull just as bollocks. Weve heard no more, still not been increased with the banding. My partners parents are continuing to be nasty towards us which is causing my lungs to be shit. Woke up this morning and my sats were 93 and i had so much pain in my lungs...

Lastly, my friend. Things arnt to good at all. She did end up needing ECMO because she was so poorly and they then took her down gor open heart surgery the next day. Things are not good though. Theres lots of complications going on and although she got off the ventilator yesterday, shes had to go back onto it todag and shes starting to deteriorate again. Hate that so many of my friends r suffering because of crap health.

TTFN

XXXX

Muscles

Finally we managed to go out today with our amazing friends to a place called siblyback lake.

It was amazing, the sun was shinning and it wasnt to hot so it wasnt hell to breathe.

Sadly though because life sucks when i got home i couldnt breathe. All i done was walk up the stairs instead of using the stair lift and my sats plummited to 85%. So straight on the nebs i go.

I have then slept all afternoon since.

Once i woke up, my muscles have completly gone. I literally cant sit up. I cant lift my arms at all and im generally feeling like a jellyfish.

I absolutly hate having this disease.

Its utter shit!!

TTFN

XXXX

Yuk

Ok so yet again things are crap.

All weekend ive felt like shit. To put it plainly.

Saturday my oxygen levels wanted to start dipping and by last night i was down to 89%. My pulse was up at 160 and i was trying to be sick...no that sounds wrong. Basically following my tummy surgery it is impossible for me to be sick so my body was going through the motion of being sick but no liquid from my tummy could actually escape.

Ive literally been a vegetable in bed all weekend because of feeling so poorly and im also suffering from yet another migraine.

Tonight i was checking my oxygen levels and they are now sitting at 86%.

I thought my sats monitor was playing up initially so i put it on my other halfs finger but it came up at 98% so its clearly just me.

Im refusing to be admitted. I cant. Next week we have something really important we have to do and im not missing out on this opportunity.

Really wish my lungs would get a grip and give me a break

TTFN

XXXX