Tuesday, 1 November 2011

November 2011. In which my sister visits from Australia and I go camping.

01/11/2011. 4.41am
some passing glass sensation but weaker than previously waking me but can return to sleep fairly stiff joints
01/11/2011. 7.56pm
Catheter change was more painful than usual Sister and family visiting from Australia in the evening - tiring but wonderful
02/11/2011. 5.38am
Worn out can't sleep position pain passing glass sensation cold teeth chattering bit the side of my tongue
02/11/2011. 8.07pm
Another bizarre day carer off sick went to the zoo with p.a. and his son and met sister and family visiting from Australia.
03/11/2011. 1.12am
restless and uncomfortable bottom very sore finding it hard to sleep after staying awake waiting for daughter to be dropped home after a gig.
03/11/2011. 8.38pm
Extremely tired today. Also getting jittery about some financial concerns. Didn't eat as well as the previous few days.
04/11/2011. 3.17am
Positional discomfort sore bottom legs heavy too hot dehydrated feeling of impending panic can't sleep.
04/11/2011. 8.32pm
Superb hydrotherapy session with proper physiotherapist! Unbelievably relaxed and loose limbed. Can't stop smiling.
05/11/2011. 5.49am
Slept deeply and woke only once for moving. Feeling refreshed. Knees feel easier quads less tense.
05/11/2011. 5.09pm
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.
05/11/2011. 10.31pm
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.
06/11/2011. 5.17am
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.
06/11/2011. 8.37pm
Daughter quite unwell with sore throat headache and earache making her dizzy I'm ok.
07/11/2011. 5.19am
Woke a few times with sore skin under my bottom dehydrated night bag nearly empty but passing a fair bit (tsp) of blood.
07/11/2011. 7.57pm
Shattered. Daughter still ill. She slept all day. Tech support came to tweak my environmental controls.
08/11/2011. 6.42am
Someone robbed half the night! I woke shattered with an aching thigh as if someone kicked me.
08/11/2011. 12.58pm
Dribbling like Beethoven but mightily relieved that my daughter is in greatly improved health.
08/11/2011. 9.17pm
Daughter's parents' evening went well. My sister from Liverpool deputised for me She was formidable.
09/11/2011. 5.57am
Reasonable night slept well enough with a few wakes in position pain Legs and hips quite stiff.
09/11/2011. 6.48pm
quiet day at the computer. Bit of a choking episode at tea time All well again now but worn out.
10/10/2011. 5.04am
Can't stop grinding my teeth. Legs twitching like mad despite extra baclofen.
10/10/2011. 8.52pm
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.
11/11/2011. 6.41am
Good night until I woke with cramps twitching spasms and dehydration to find the eye gaze switched off and panic button out of reach
11//11/2011. 9.29pm
Shattered after a fun but freezing day in the garden with my p.a.
12/11/2011. 5.17am
some positional discomfort now really quite unpleasant but slept straight through, which is a rarity.
12/11/2011. 8.43pm
Slow day tired and sluggish Didn't do much but a good shower and bowel movement.
13/11/2011. 1.07am
First night back on feed - hideous stomach ache! Need to bend double but can't.
13/11/2011. 8.51am
Took feed off and after two hours of severe sharp pain the stomach ache subsided. Still feel dodgy.
13/11/2011. 5.17pm
visit from long lost friend really brightened my day. Lovely hour snacking with daughter over her revision
13/11/2011. 8.57pm
clucking like a junkie. Mis communication has led to a carer no show. on way now but late
14/11/2011. 5.44am
Muscles tense and twitching slept fitfully in great discomfort no feed no stomach ache is a bonus though
14/11/2011. 8.51pm
Fun day with carers time flew ate well no pain well looked after
15/11/2011. 6.35am
Slept from early evening in my chair. Well rested but a tad dehydrated.
15/11/2011. 5.51pm
Pampered and groomed for the weekly shop with carer. Grinding teeth still an issue.
16/11/2011. 3.57am
My sleep pattern is out of whack. Woke with position pain and found it hard to get back to sleep Slept early evening
16/11/2011. 5.49pm
ate well worn out after trip to the market. I was scared when my driving arm failed and I could not work the joystick
17/11/2011. 3.07am
strong shooting pain in my urethra
17/11/2011. 5.57am
Still can't sleep. Waves of pain every few seconds. Blood clots in catheter. Lessening but still unpleasant
17/11/2011. 10.34pm
Hideous stomach cramps and back ache continued all day with fatigue. Slight indication of menstrual show was a relief
18/11/2011. 4.39am
A fractured night with some discomfort but long periods of much needed sleep.
18/11/2011. 6.49pm
No hydrotherapy until Monday. It's inconvenient and I'm not keen on change.
19/11/2011. 4.54am
Woke up a couple of times aching and in need of a position change otherwise slept well
19/11/2011. 10.46pm
Wrapped up and braved the garden, whilst carer prepared it for winter. Take away tea with daughter 1 choke, several naps
20/11/2011. 5.04am
Shat myself. Took a while to get me changed and into bed. Sore, skin red and blistering.
20/11/2011. 6.35am
Unexpectedly fun day pottering around the house. Tired now but wonderfully well cared for. Minor choking incident at lunch.
20/11/2011. 9.01am
Sunday carer is off sick. Lovely cover carer is showering with care and my bottom feels  much improved.
21/11/2011. 6.40am
Quiet restful night. Woke 3 or 4 times for rearranging my position and moving my limbs but no problem getting back to sleep.
21/11/2011. 9.02pm
Hydrotherapy was wonderful and much needed. I saw an OT about a further ceiling track and made a delicious stew with my PA.
22/11/2011. 4.53am
Slept well. Woke feeling dehydrated and groggy with sore buttocks. Need the toilet.
22/11/2011. 11.23pm
Calm day conserving energy for the evening. Theatre was great fun despite BM midway through the second act!
23/11/2011. 6.13am
Slept through with 1 wake. Sore labia from sitting in wet BM for hours last night but worth it.
23/11/2011. 6.01pm
Made bread pudding with carer Tired but well fed quite twitchy in triceps, deltoids and adductor muscles
24/11/2011. 3.19am
awoken by severe sharp pain between buttocks as though I had been goatsee'ed, torn asunder. The bottom sheet had slipped.
24/11/2011. 7.47pm
Hectic day of visitors waxing pie competition and being the taxi of mum!
25/11/2011. 2.41am
Slept fitfully and could not find a comfortable position dehydrated and constipated.
25/11/2011. 7.23pm
Another busy day with medical visitors and preparing food/packing for camping trip.
26/11/2011. 5.00am
Fairly uneventful night one minor choke sorted by able carer.
26/11/2011. 11.47pm
This yurt is awesome! I'm camping with 2 carers and the partner and son of one of them.
27/11/2011. 3.34am
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.
27/11/2011. 5.21pm
shattered but well worth it. Superb care, improvisation and fun.
28/11/2011. 4.08am
Everything aches but I expected that. Carer watching for choking like a hawk. It's worse when I'm tired.
28/11/2011. 7.51pm
Surprised by wheelchair engineers this morning, hydrotherapy pm then several naps later time for an early night.
29/11/2011. 3.37am
feet freezing struggling for breath still so tired and slightly headachy carer concerned but it will pass.
29/11/2011. 7.02pm
Relaxed after hilarity. Tuesday carer sick but Sunday carer stepped in.
30/11/2011. 2.47am
Quite a scare when a power surge tripped the fuses. All my equipment off and beeping.
30/11/2011. 5.11pm
Another restful day. Grateful that strikes caused postponement of routine blood tests. Still achy, diarrhoea.

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