01/12/2011. 1.03am
Sore bottom, frozen stiff feet, cramp in left hand.
01/12/2011. 4.02pm
quiet day getting to grips with some paperwork
02/12/2011. 5.07am
Passing glass sensation stronger than usual. Sore neck and shoulders. Hips heavy and aching.
02/12/2011. 5.43pm
shaky start with diarrhoea and running my chair halfway up a door, things have settled. Still getting hand and leg tremors, jaw locking.
03/12/2011. 12.23am
Ankle has slipped and turned painfully. I'm wide awake grinding my teeth. Catheter sore, passing glass sensation.
03/12/2011. 9.38pm
Had a lovely lunch in Cheshire with my daughter. We laughed and she was a tonic. My dodgy bowels held out until we got home.
04/12/2011. 5.27am
Feet freezing and turned over but a reasonable night with only one discomfort wake.
04/12/2011. 8.08pm
shaved, showered and exercised worn out but in a good way
05/12/2011. 4.47am
Woke carer a couple of times but slept straight after each wide awake now but had a long evening nap.
05/12/2011. 8.19pm
Excellent hydrotherapy although I dislocated my left shoulder. Delicious stew and good company
06/12/2011. 3.11am
Catheter bag fell off the side of the bed tugging communication is even harder when I'm in pain
06/12/2011. 4.08pm
Catheter change at the hospital has been worse but still quite painful going to bed now so I can make it to a science gig tonight
07/12/2011. 1.13am
Uncaged Monkeys gig was amazing both carers needed for toileting and keeping crowds from crushing me but I'm elated.
07/12/2011. 12.34pm
blood testing at gp surgery hurt and my joystick arm (left) gave up halfway home in the bitter icy-blast I'm really tired
08/12/2011. 5.32am
Restful sleep but can no longer use the bed control Carer needed for adjustments Woke at 5 feeling refreshed with sore ankles
08/12/2011. 7.07pm
Good clinic at the respiratory centre then visited my parents. Daughter revising for GCSE I'm napping
09/12/2011. 3.16am
Bottom feels stretched and uncomfortable Sore ankles and neck Need to move itching badly
09/12/2011. 8.59pm
A productive finance meeting with my staffing accountant. I sent off my niece's present. Sadly too tired to manage friend's gig.
10/12/2011. 4.13am
Cold woke me! My body clock is out of synch. I can't sleep. My nose is frozen and runny and my legs and shoulders ache
10/12/2011. 6.19pm
took my small niece and nephew to see Wind in the Willows - tiring!
11/12/2011. 2.24am
BM in bed Sore itchy groin Desperately uncomfortable Carer accidentally took phone handset home so no emergency contact
11/12/2011. 7.47pm
Fairly slow day tired and achy but nothing specific. Probably due a rest and change the pace down a gear
12/12/2011. 5.17am
Quiet night. Poohed a little but carer cleaned it. Stiff joints but otherwise fine.
12/12/2011. 9.40am
Just had the worst bout of choking so far. 2 experienced PAs were freaked out by it. Dealt with it professionally but scared
12/12/2011. 5.27pm
Needed to relax as increased spasticity and cramping. Good float at hydrotherapy NOt as good is still pretty close to excellent. Shattered.
13/12/2011. 6.11am
After a late tea delayed by daughter's Christmas shopping I was flat out in my wheelchair waking only for pain relief from period pains.
13/12/2011. 8.38pm
Boring day dragged. Wednesday non driving carer covering for Tuesday carer's holiday. She does make a cosy evening though.
14/12/2011. 2.27am
Menstruating very heavily. Need to change the sheets. That's my Mirena coil worth the effort then / sarcasm.
14/12/2011. 7.20pm
Dragging day 2 not helped by household of 3 sulky, hormonal women and a burst pipe in the kitchen.
15/12/2011. 2.55am
Feet freezing, legs cramping, groin feels like it's been kicked by stampeding cattle, kidneys and neck ache, runny nose.
15/12/2011. 3.40pm
Trying to relax through the period pains, the neck and back ache and general grouchiness to get to a New Model Army gig tonight.
15/12/2011. 11.57pm
Awesome gig.
16/12/2011. 4.31am
sharp pain in lower back need to pooh. On reflection, it's been a good few days! Feel sick, which puts me in fear of choking.
16/12/2011. 9.07am
A good deal better after BM Lower back and neck still ache and nose still runny but lovely carer is looking after me.
16/12/2011. 7.03pm
Fairly wiped out but a fun day. Dribbling and chewing my cheek a lot.
17/12/2011. 5.50am
Reasonably good night. Sore hips and shoulders and a heavy uncomfortable bleed but feeling the benefit of sleep.
17/12/2011. 7.07pm
Lovely day ferrying my daughter around and doing the weekly shop. Could do with an end to this period now.
18/12/2011. 4.33am
Buttocks sore and stretched legs heavy and pressing into the bed shoulders twitching neck aches.
18/12/2011. 7.47pm
Quiet restful day.Grinding and gnashing of teeth quite apparent.
19/12/2011. 4.33am
uneventful night woke a couple of times with random positional issues. Buttocks sore and stretched and groin feels grainy period ending.
19/12/2011. 4.58pm
Better hydrotherapy session than the last. Physiotherapist had an observer and did a full ROM workout.
20/12/2011. 2.11am
Buttocks sore and stretched Legs heavy Neck and shoulders ache Runny nose all over my face. Daughter and her friend giggling to 2am.
20/12/2011. 9.47am
Seem to have slept all day. Napping on and off and an extra hour on bipap in bed.
21/12/2011. 4.05am
Seem to have done nothing but sleep. Still tired, sore buttocks, cat giving me a dead leg.
21/12/2011. 8.49pm
Panto with niece wore me out. Daughter socialising til late. I want to stay awake to know she is safe.
22/12/2011. 3.03am
Sore buttocks and groin feels grainy. Ankle is painful from foot drop. Feet freezing. Neck aches.
22/12/2011. 9.08pm
Fun day sorting through Christmas gifts for nieces and nephew. Quite pronounced dribbling in bipap.
23/12/2011. 3.13am
Hips and legs sore Ankles painful and feet twitching Dribbling and itching and chewing my cheek.
23/12/2011. 7.04pm
Very tired Spent the day instructing my PA in cooking for Christmas dinner Fun but exhausting.
24/12/2011. 2.05am
Kidney pain severe Diarrhoea in bed
24/12/2011. 7.32pm
Lovely Christmas eve despite the seriously tiring diarrhoea, which seemed to know the worst moments to strike!
25/12/2011. 1.53am
Woke to wish daughter a merry Christmas and can't get comfy.
25/12/2011. 8.21am
Gifts exchanged, dinner prepared, daughter off to deliver presents. Stomach settled and behaving nicely. Just the neck ache to sort.
25/12/2011. 9.30pm
Quite merry, full of food and very tired. Festive day with PA and his partner. Basil Cat did not get on with their dog!
26/12/2011. 4.19am
slight toe twitching excessive dribbling and a slipped pillow all sorted by PA.
26/12/2011. 9.30pm
One small choke and several naps, a trip to my sister's and a minor plumbing disaster.
Good Boxing day.
27/12/2011. 4.53am
After all the napping I ought to be better rested but am quite tired. My feet have been so cold. I have shooting pain up both legs.
27/12/2011. 12.36pm
Bought a lovely brown sofa and started making my costume for the party on Thursday. Thanks due to my arty, crafty PA.
27/12/2011. 8.23pm
lit. watching paint dry on my train costume. Doing ROM exercises to alleviate cramping.
28/12/2011. 5.17am
Feet freezing, legs cramping. Don't want to wake anyone but can't bear it.
28/12/2011. 7.58pm
Spent a while on bipap then had a restful day. nearly blown over on the way to the chemist's.
29/12/2011. 9.18am
Face really itchy driving me to distraction. Arm and left hand twitching, leg cramps.
29/12/2011. 9.54am
Random discovery: I can no longer lick my lips or stick my tongue out!
29/12/2011. 10.30pm
Family came for fancy dress. I felt fairly isolated amongst the hubbub but loved seeing everyone. Children played in my cardboard costume.
30/12/2011. 3.19am
Woke up dehydrated and groggy. Buttocks sore and stretched, legs heavy and pressing into the bed. Neck quite sore but not as bad as it was.
30/12/2011. 8.12am
My little Glaswegian niece is the most wonderful waker-upper. She chats away to me and all my discomfort is irrelevant.
30/12/2011. 9.39pm
Phew! Some semblance of normality. Tea was lovely. Relatives have got safely back to Scotland. new sofa has arrived. Dribbling profusely.
31/12/2011. 4.06am
Severe neck pain. Pillow feels flat.
31/12/2011. 10.27am
Tired out neck sore but resting, trying to take it easy for visitors tonight.
31/12/2011. 10.42pm
Thanks to amazing PA I am enjoying New Year's Eve. A touch of diarrhoea and a coughing fit nearly confounded my well laid plans.
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