Saturday, 1 October 2011

October 2011. 5n which I have stomach ache and wonder whether my feed is off.

01/10/2011. 4.20am
bottom stretched and breaking feels as if I'm lying on cheese wire.
01/10/2011. 6.58pm
Carer took me to Liverpool to see my sister. drained and still bleeding heavily but worth it.
02/10/2011. 4.04am
Passing glass sensation. Too hot and dehydrated position uncomfortable.
02/10/2011. 8.42pm
Bulk of the day spent writing about armchair anarchy and napping between watching politics and protest unfold. Still have stomach cramps.
03/10/2011. 3.28am
Stomach ache - want to curl up and cry.
03/10/2011. 5.28pm
Great day with carer. Bought local produce & harvested from my garden for a delicious tea. Slight wobble breathing wise fixed by bipap.
04/10/2011. 2.06am
Slept deeply in my chair in the evening now wide awake. Too hot and aching catheter hurts legs heavy neck and ankles sore.
04/10/2011. 5.28pm
Met a really cool lad who came round to talk gardens and permaculture. Played in the garden for hours.
05/10/2011. 4.17am
Fell asleep in my chair at 6.30pm. woke briefly to get into hoist and bed. Bottom stretched and uncomfortable limbs pressing on bed.
05/10/2011. 8.12pm
Sleepy after a day of doing nothing. Touch of the runs earlier but then ate more than usual orally.
06/10/2011. 4.57am
Cold sweating heart rate increased stomach in knots worrying irrationally about rig change tomorrow.
06/10/2011. 9.50pm
RIG replacement went much better than I had feared. Weed and brandy soothed the aching
07/10/2011. 6.46am
Slept well with some aching. I have noticed increased teeth grinding for a few days and excessive chattering in slight cold.
07/10/2011. 5.09pm
not amazing hydrotherapy today but the water was excellent as ever. Delicious dahl for tea made by a friend.
Slept well after another light weed and brandy evening. All gone now but I woke feeling refreshed. A rare treat.
08/10/2011. 4.15pm
Lovely day spent with my daughter. Techie carer is investigating PLM suggestions for eyegaze.
09/10/2011. 4.56am
Another good night's sleep although I am now aware of growing discomfort around my hips and buttocks.
09/10/2011. 8.17pm
Wednesday carer covered sick Sunday carer's shift quiet day
10/10/2011. 5.18am
Woke twice with positional discomfort got to sleep fairly quickly afterwards feeling refreshed now though hips hurt.
10/10/2011. 1.26pm
going through cook books with carer for something that I can eat and daughter will enjoy. Having enormous fun. Skyped aussie sister.
11/10/2011. 5.28am
Slept well eventually after another choking episode - not as severe as last time but scary enough.
11/10/2011. 7.02pm
pleasant day bar a couple of spluttering incidents, very tired. Regret I can't manage the deep conversation my daughter wants.
12/10/2011. 3.19am
horrible stomach ache, hot and cold sweats and I've poohed the bed. Wretched.
12/10/2011. 8.17pm
Plasterers working upstairs solicitor visit at midday daughter's school forms to attend to. I'm exhausted.
13/10/2011. 5.09am
generally uncomfortable with stomach ache and diarrhoea
13/10/2011. 10.55am
coffee and a cleanup and I feel semi human. playing with computer with carer atm emoticon smile
13/10/2011. 8.32pm
Dentist was thankfully uneventful.
14/10/2011. 5.37am
Another night with an upset stomach. Wondering if my feed is off?
14/10/2011. 9.49pm
Pottered about and discussed politics on line. Sorted some financial guidelines with daughter and napped on bipap.
15/10/2011. 5.53am
After  initial difficulty slept well needed turning a few times but no particular pain.
15/10/2011. 9.27am
An interesting day ahead. Going with carer and his son for a ride on some diesel trains.
15/10/2011. 6.33pm
Brilliant day out. Felt a bit awkward spare part with carer's family but only a bit. Met a lovely couple chatted about beer.
16/10/2011. 4.19am
Stomach ache again. Hot dehydrated and constipated. cold sweats.
16/10/2011. 5.03pm
Unable to effect BM but mobility of w/chair eased stomach pain. Went to pictures with niece. Lion King. She was captivated.
17/10/2011. 4.27am
Stomach pain back with a vengeance I'm so tired. Feel nauseous.
17/10/2011. 11.32 pm
well enough considering that I have stomach ache and have spent hours talking to the wheelchair engineers.
18/10/2011. 4.39am
woke choking eyes streaming carer communication difficult
18/10/2011. 11.45am
I poohed! Stomach still grumbling but I'm greatly relieved.
18/10/2011. 9.06pm
Exhausted after Macmillan nurse initial visit Sticky mouth and throat causing me to gag.
had to take an extra baclofen to combat spasms.
19/10/2011. 4.47am
Painful position has woken me several times. It's very cold making me shiver uncontrollably. Painfully biting mouth and gnashing teeth.
19/10/2011. 1.59pm
Eyes stinging and tired. Face itching. Managed to eat lunch. Mouth aching but less sticky.
20/10/2011. 3.57am
Need to move. Buttocks very painful, knees ache.
20/10/2011. 7.19pm
Went to Mum's, brief visit Carer's cold worsened throughout the day. I feel a stuffy head and sore throat coming on-possibly Psychosomatic.
21/10/2011. 3.17am
Sleep disturbed uncomfortable and dehydrated. Can't stop grinding my teeth and biting my mouth.
Exhausted! Good float at hydrotherapy but disappointed by ineffective physiotherapy exercises.
22/10/2011. 4.38am
position pain growing discomfort. Hips and back hurt.
22/10/2011. 6.55pm
Shattered : family get together. Over 50 of us from many continents. No one could understand a word I said There was lots of love though.
23/10/2011. 4.42am
Body clock totally out of synch but other than being wide awake when I should be fast asleep I'm pretty ok.
23/10/2011. 4.55pm
Feeling slightly more human though neck is hurting a lot.
24/10/2011. 3.24am
Stiff joints positional discomfort sore buttocks and an infuriating twitch in left toes
24/10/2011. 10.28am
Much better now I'm up and about but starting flu jab day I'm worn out.
24/10/2011. 5.33pm
Flu jab went fine Dr advises that I crush tablets and administer all medication enterally from now on due to choking episode.
25/10/2011. 4.26am
Horrible stomach ache. Have to move, can't cope.
25/10/2011. 7.27pm
Stomach ache continued all day but regular hydration seemed to ease the pain. Exhausted.
26/10/2011. 6.11am
Slept well straight through bar once for turning. Didn't have feed on overnight wonder if it could be off?
26/10/2011. 7.06pm
Quiet day very cold outside. Enjoyed messaging a long lost friend but possibly overdid it slightly eyes tired difficult/mouse control
27/10/2011. 3.39am
Bottom stretched and sore. neck aches, legs and hips heavy back aches. Teeth grinding badly.
27/10/2011. 9.44pm
Nice lazy day, took daughter to the bus to spend a few days with her auntie then back home for rom exercise and cake.
28/10/2011. 7.24am
Lovely night's sleep following weed and brandy evening. The tiniest amount really makes a difference.
28/10/2011. 8.19pm
Made stew and ate plenty. Daughter came home asking for fancy dress ideas. Exhausting but fun.
29/10/2011. 5.47am
Some discomfort but positional and easily fixed glad to have another night no feed no stomach ache
29/10/2011. 10.13pm
Saturday carer is still sick Day out at the Media Museum with my p.a. and his children. Ate loads! still feel strong from Thursday.
30/10/2011. 1.33am
great hilarity as daughter phoned from a party for a curfew extension and woke a befuddled carer who thought I was in distress.
30/10/2011. 4.12pm
After not a lot of sleep I am feeling lethargic. Daughter has been lovely though perhaps in an attempt to avoid revision homework!
31/10/2011. 5.43am
Quite stiff and aching woke a couple of times but another night no feed no stomach ache. Really hungry right now.
31/10/2011. 7.17pm
had guests for dinner. Lovely evening and I had a run out in my chair locally this afternoon.

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