some passing glass sensation but weaker than previously waking me but can return to sleep fairly stiff joints
Catheter change was more painful than usual Sister and family visiting from Australia in the evening - tiring but wonderful
Worn out can't sleep position pain passing glass sensation cold teeth chattering bit the side of my tongue
Another bizarre day carer off sick went to the zoo with p.a. and his son and met sister and family visiting from Australia.
restless and uncomfortable bottom very sore finding it hard to sleep after staying awake waiting for daughter to be dropped home after a gig.
Extremely tired today. Also getting jittery about some financial concerns. Didn't eat as well as the previous few days.
Positional discomfort sore bottom legs heavy too hot dehydrated feeling of impending panic can't sleep.
Superb hydrotherapy session with proper physiotherapist! Unbelievably relaxed and loose limbed. Can't stop smiling.
Slept deeply and woke only once for moving. Feeling refreshed. Knees feel easier quads less tense.
Mmm humus and Emma's chillis then Tom's stew and Maggie's bread. I've nearly burned my face off but what a good do.
Wind in my face friends and a bonfire that couldn't be beat Surround sound pyrotechnics steaming bowls of stew apple pie and cherry brandy.
Lovely deep sleep woke once for more blankets and once for moving Straight back to sleep Sore bottom feels like I sat on a Tonka truck.
Daughter quite unwell with sore throat headache and earache making her dizzy I'm ok.
Woke a few times with sore skin under my bottom dehydrated night bag nearly empty but passing a fair bit (tsp) of blood.
Shattered. Daughter still ill. She slept all day. Tech support came to tweak my environmental controls.
Someone robbed half the night! I woke shattered with an aching thigh as if someone kicked me.
Dribbling like Beethoven but mightily relieved that my daughter is in greatly improved health.
Daughter's parents' evening went well. My sister from Liverpool deputised for me She was formidable.
Reasonable night slept well enough with a few wakes in position pain Legs and hips quite stiff.
quiet day at the computer. Bit of a choking episode at tea time All well again now but worn out.
Can't stop grinding my teeth. Legs twitching like mad despite extra baclofen.
Where did the day go? Lovely carer doing bits and pieces with me Daughter was a thing possessed as she prepared to go to a gig in town.
Good night until I woke with cramps twitching spasms and dehydration to find the eye gaze switched off and panic button out of reach
Shattered after a fun but freezing day in the garden with my p.a.
some positional discomfort now really quite unpleasant but slept straight through, which is a rarity.
Slow day tired and sluggish Didn't do much but a good shower and bowel movement.
First night back on feed - hideous stomach ache! Need to bend double but can't.
Took feed off and after two hours of severe sharp pain the stomach ache subsided. Still feel dodgy.
visit from long lost friend really brightened my day. Lovely hour snacking with daughter over her revision
clucking like a junkie. Mis communication has led to a carer no show. on way now but late
Muscles tense and twitching slept fitfully in great discomfort no feed no stomach ache is a bonus though
Fun day with carers time flew ate well no pain well looked after
Slept from early evening in my chair. Well rested but a tad dehydrated.
Pampered and groomed for the weekly shop with carer. Grinding teeth still an issue.
My sleep pattern is out of whack. Woke with position pain and found it hard to get back to sleep Slept early evening
ate well worn out after trip to the market. I was scared when my driving arm failed and I could not work the joystick
strong shooting pain in my urethra
Still can't sleep. Waves of pain every few seconds. Blood clots in catheter. Lessening but still unpleasant
Hideous stomach cramps and back ache continued all day with fatigue. Slight indication of menstrual show was a relief
A fractured night with some discomfort but long periods of much needed sleep.
No hydrotherapy until Monday. It's inconvenient and I'm not keen on change.
Woke up a couple of times aching and in need of a position change otherwise slept well
Wrapped up and braved the garden, whilst carer prepared it for winter. Take away tea with daughter 1 choke, several naps
Shat myself. Took a while to get me changed and into bed. Sore, skin red and blistering.
Unexpectedly fun day pottering around the house. Tired now but wonderfully well cared for. Minor choking incident at lunch.
Sunday carer is off sick. Lovely cover carer is showering with care and my bottom feels much improved.
Quiet restful night. Woke 3 or 4 times for rearranging my position and moving my limbs but no problem getting back to sleep.
Hydrotherapy was wonderful and much needed. I saw an OT about a further ceiling track and made a delicious stew with my PA.
Slept well. Woke feeling dehydrated and groggy with sore buttocks. Need the toilet.
Calm day conserving energy for the evening. Theatre was great fun despite BM midway through the second act!
Slept through with 1 wake. Sore labia from sitting in wet BM for hours last night but worth it.
Made bread pudding with carer Tired but well fed quite twitchy in triceps, deltoids and adductor muscles
awoken by severe sharp pain between buttocks as though I had been goatsee'ed, torn asunder. The bottom sheet had slipped.
Hectic day of visitors waxing pie competition and being the taxi of mum!
Slept fitfully and could not find a comfortable position dehydrated and constipated.
Another busy day with medical visitors and preparing food/packing for camping trip.
Fairly uneventful night one minor choke sorted by able carer.
This yurt is awesome! I'm camping with 2 carers and the partner and son of one of them.
Howling gale outside has crept in through the top panel, the fire has gone out, my nose is frozen and I'm stiff. Thankfully I'm drunk.
shattered but well worth it. Superb care, improvisation and fun.
Everything aches but I expected that. Carer watching for choking like a hawk. It's worse when I'm tired.
Surprised by wheelchair engineers this morning, hydrotherapy pm then several naps later time for an early night.
feet freezing struggling for breath still so tired and slightly headachy carer concerned but it will pass.
Relaxed after hilarity. Tuesday carer sick but Sunday carer stepped in.
Quite a scare when a power surge tripped the fuses. All my equipment off and beeping.
Another restful day. Grateful that strikes caused postponement of routine blood tests. Still achy, diarrhoea.