Thursday, 1 September 2011

September 2011. In which I take part in The Great North Run and have my birthday.

01/09/2011. 3.09am
Position pain and cramps. Itching everywhere. Really need to move knee.
01/09/2011. 6.19pm
routine hospital appointment re bipap then uniform shopping with daughter for next term. Shattered.
02/09/2011. 2.42am
Woken by passing glass sensation labia sore shoulders and neck ache legs heavy heels and buttocks sore and stretched.
02/09/2011. 1.54pm
After blood clots in urine this morning everything seems to have settled dashed out for emergency homework supplies now need nap.
03/09/2011. 2.09am
So exhausted all afternoon slept all evening rig has retracted right to the rubber, pulling in my stomach, painful.
03/09/2011. 6.57pm
a fairly placid day energy failed quite early much napping
04/09/2011. 3.04am
Disturbed night slept fitfully too uncomfortable and hot.
04/09/2012. 8.02pm
swapped shift w/day carer went for a stroll, watched bowls very tired but less exhausted frequent position changes required.
05/09/2011. 5.57am
Only woke a couple of times with pressure pain and sticky mucus which can be frightening otherwise restful sleep
05/09/2011. 8.43pm
lovely day. Took Basil cat to the vet. He is well. I was caught in the rain. Ate a good tea and entertained guests in the evening.
06/09/2011. 4.50am
Needed to move postural pain several times. Runny nose all in my mouth BM squelching in my bed and sore.
06/09/2011. 7.01pm
Left hip aching and quite a bit of excess mucus in my mouth nostrils blocked. Wednesday carer phoned sick for tomorrow. Worried.
07/09/2011. 3.06am
Postural pain ankles and thighs heels and hips aching. Can't quite shift mucus. Big L toe hurts. Must sleep.
07/09/2011. 6.49pm
A day at the museum with my 2yr old pal and his dad. Everything worked and felt relaxed. Even my present tiredness is pain free.
08/09/2011. 5.43am
Slept through bar once very refreshed but with a sore and aching bottom. Back feels uncomfortable too.
08/09/2011. 8.41pm
Good day of pampering and laughter with carer. Big L toe still sore. Need moving a lot.
09/09/2011. 5.33am
Painful passing glass sensation with slight urine leak onto pad. Uncomfortable position, legs ache and ankle sore.
09/09/2011. 7.56pm
Lovely float at hydrotherapy but not much exercise with new physio.
10/09/2011. 5.18am
ankle and big L toe sore. Sitting on a crease. Bottom stretched uncomfortable. Limbs heavy pressing into the bed. L pointer finger cramped.
10/09/2011. 5.59pm
Very tired so quiet day. Decided not to brave the weather. Toe still sore to touch.
11/09/2011. 3.32am
Muggy night can't sleep. Can't get comfy.
11/09/2011 6.42pm
Quiet day windy and raining so I gave the Rush Bearing Festival a miss. Blister on bottom sore.
12/09/2011. 4.59am
Bottom sore feels stretched legs heavy neck off balance.
12/09/2011. 8.23pm
Well, clean, fed and covered in Sudocrem! Lovely day baking with carer.
13/09/2011. 2.40am
Passing glass sensation stronger than ever. Hurts.
13/09/2011. 5.17pm
incredibly tired but enjoyed a long shower wrapped up and watched the rain lash down sorted paperwork.
14/09/2011. 2.53am
Passing glass sensation strong, suspect there will be blood clots in catheter ankle and bottom hurt back feels like something is pressing in.
14/09/2011. 7.53pm
Clinic day at the hospital. Consultant made me smile even whilst booking my rig change. Very tired now.
15/09/2011. 4.16am
Passing glass sensation again. Back ache. Blocked and runny nose. Hand sore and cramped.
15/09/2011. 8.54pm
busy day of admin. Clean fed and rehydrated some positional discomfort easily fixed slight passing glass sensation.
16/09/2011. 4.36am
Inconsolably itchy. Want to rip my face, gouge my eyes and tear at my hair. Hot.
16/09/2011. 3.49pm
took an extra baclofen to counter this morning's violent DTs. Felt great all day.
17/09/2011. 6.43am
Slept from 4.15pm. yesterday don't recall carer shift ending, going to bed rien! No feed on overnight badly dehydrated.
17/09/2011. 1.58pm
got in some training for The Great North Run-lying in a chair being pushed is harder than you'd think!
18/09/2011. 4.37am
Up and dressed and ready to set off to Newcastle to take part in The Great North Run.
18/09/2011. 9.24pm
Could be v good or v bad too tired and achy to tell. You should see the brother who pushed me round.
19/09/2011. 6.44am
Took extra drugs yesterday. They caught up! Tired, aching and hungover but the race was awesome!
19/09/2011. 7.14pm
woozy and achy all day-tired. Dentist appointment was uneventful but the journey and communication was tiring.
20/09/2011. 3.38am
Dribbling saliva down my neck forming pools. General discomfort and knotted stomach. Waves of panic. Overheating.
20/09/2011. 5.26pm
Catheter change hurt back ache and groin sore. Feel absolutely drained.
21/09/2011. 5.29am
Sore from catheter change position uncomfortable excessive drooling.
21/09/2011. 7.57pm
Quite subdued day. Some discomfort and not a lot of energy. Car failed its MOT!
22/09/2011. 5.45am
Slept reasonably. Usual discomfort and painful bits. All seem worse when lying awake and immobile for hours on end.
22/09/2011. 9.57pm
The loveliest birthday. Mum and Dad came to tea and my daughter spoiled me rotten. Asleep by 7pm!
23/09/2011. 4.34am
Position uncomfortable need to move my bottom and bend knees. Snotty nose dribbling down my face.
23/09/2011. 9.09am
feeling quite stiff after a fairly full-on week looking forward to hydrotherapy.
23/09/2011. 7.58pm
Hydrotherapy day. Concentrated on knee bends and shoulder stretches. Walked across the pool with assistance.
24/09/2011. 3.23am
can't sleep. 2nd and 3rd fingers on each hand sticking together, 3rd overlapping 2nd.
24/09/2011. 5.56pm
fun day lovely warm shower since electrician fixed it. Still feeling loose and relaxed after hydrotherapy.
24/09/2011. 10.41pm
Panic over now but quite a scare. Took evening tablets orally baclofen or riluzole stuck in throat dissolving throat numb started choking.
25/09/2011. 5.33am
Haven't slept well, scared of choking
25/09/2011. 10.10pm
quiet day still quite shaky but calmer spent a lot of time napping
26/09/2011. 2.56am
Woke sweating dehydrated neck sore and ankle has fallen over. Hip feels displaced.
26/09/2011. 7.12pm
Friend came to tea. Spent pm with carer preparing experimental stew Courtesy car arrived. OT came to measure me for recliner chair.
27/09/2011. 5.28am
Slept well but woke with painfully stiff left knee.
27/09/2011. 5.14pm
Mundane but necessary jobs day. Gas engineer for  landlord safety check and bladder wash were the highlights.
28/09/2011. 2.29am
Stomach ache I just want to curl up into a ball.
28/09/2011. 7.05pm
Lo and behold that stomach ache has become full on cramps and menstrual period with a touch of sniffly cold thrown in to boot.
29/09/2011. 1.58am
Skin on my bottom stretched and breaking Stomach cramps so bad that I cried.
29/09/2011. 6.51pm
Absolutely shattering day with lovely speech therapist hopefully constructive.
30/09/2011. 3.25am
Sneezing snot running down my face feeling uncomfortable bottom stretched and sore.
30/09/2011. 7.19pm
Still bleeding so absolutely shattered but an otherwise great day in the surprise September sunshine.

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