Neutral

I didn't realise how much I relied on muscles that I would have rated as next to useless. My shoulder and arm ache constantly and I am extremely tired all the time . I didn't make it to my friend's birthday party this evening. I am sick of letting people down. I know she will be fine about it but all the same...

Neutral

I took half (10ml) of my baclofen and seem ok just tired from a night hoisting out of wet sheets.

Neutral

I feel tonnes better than I did. Turns out that my catheter isn't blocked but I am having some major bladder spasm. I wee'd all over my chair and onto the floor so I got in bed whilst the cushions dried and promptly bled  through the pad and over the sheet.

Bad

Happened again after morning drugs. Fine then not fine. Less severe today but still unpleasant and in addition I have a blocked catheter and am menstruating: lovely!

Bad

Felt fine when I woke up at 7am with my feed pump beeping end of dose! I took my morning drugs, including a new batch of baclofen, opened yesterday! Same dose, different brand name. Within 15 minutes I was blindingly photosensitive and exhaustively fatigued it took 2hrs to get to shattered, where I could signal yes/no responses. I am still very tired.

Neutral

Slept for most of the day. Cough assist machine brought a lot of thick phlegm. Catheter was quite weepy.

Bad

Took morning drugs but didn't watch them being administered carefully. Felt tired and put it down to a disturbed night . I'm now wondering if my p.a got the correct dose or gave me too much? I have a migraine type headache and can't bear light. I feel totally drained.

Neutral

I'm better now, if a little tired. For the past few nights, with my feed pump at only 80ml/hr, I've had stomach ache and trapped wind. It's been very warm at night.

Bad

Horrible indigestion stomach ache.

Good

After a productive meeting with my speech therapist to fix a glitch on my eye gaze, a stroll round the nature reserve and cake baking with my daughter, I am happily pooped.

Good

I was shattered last night and this morning but I feel much better after a good blast on the cough assist and suction machines.

Very Good

Training a new p.a then hydrotherapy, then shopping, then cooking tea, then training an established p.a in I.T then training the new p.a again then bed. What a day!

Very Good

Had a wonderful day visiting a friend. She's a 'wheelie' too, so her house is accessible. Played with her communication aids and assorted cool gadgets.

Very good

Saw Fairport Convention with the amazing Chris Leslie tonight. I really enjoyed it but shed a few tears when I couldn't join in. If there was ever a musician, whose style I tried to emulate, it was he.

Good

Still tired. Still glowing from last night

December 2011. In which I have dodgy bowels and a fun Christmas.

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.

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.

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.

08/10/2011.7.07am

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.

21/10/2011.8.23pm

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.

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.

August 2011. In which I have a lot of catheter problems.

01/08/2011 5.57am

Hot dehydrated sweating considerable position pain but slept soundly waking once carer spent the night so it was fine

01/08/2011 5.37pm

seem to have stopped menstruating :) 2 new blisters top of each inside leg :( hurts

02/08/2011 3.00am

Hot sweating dehydrated constipated feels like my internal organs are cooking

02/08/2011 9.37pm

shopping and a meal out plus a mad dash for shelter in sheet rain and a 2hr drive home. I'm shattered

03/08/2011 4.00am

Hot but not as bad as last night still can't sleep and still need to bottom and blisters feeling pressure

03/08/2011 6.23pm

Nothing excessive but blisters between my legs sore also have sore bottom and sciatic pain

04/08/2011 4.51am

Too hot and sticky Touch of indigestion and positional discomfort very tired

04/08/2011 8.54pm

lovely day scrubbed and groomed bit of a problem with catheter blocking watched bowls league at the end of the lane

05/08/2011 5.19am

Hot dehydrated kidney ache sweating need air and movement

05/08/2011 7.57pm

still having problems with catheter blocking urinating the traditional way onto pads. Went for a short woodland walk which was fun

06/08/2011 3.40am

late to bed dozed off in chair stiff uncomfortable position fluttery breath sore bottom from wet pad

06/08/2011 7.51pm

exhausted went to a local music festival to see friends play catheter blocked leaking and bleeding sore exhausted

07/08/2011 1.20am

pressure on buttocks and heels ankle flopped over and hurts worried that blisters are forming between my legs wet pad catheter blocked

07/08/2011 8.30pm

Catheter blocking frequently stoma red raw and sore weeping more than usual rig also weeping

08/08/2011 3.54am

sore between my legs from urine catheter stoma really sore bottom feels stretched heels hurt

08/08/2011 8.09pm

I said neutral to reflect physically bad emotionally good! Went out with friend catheter blocked pissed on restaurant floor now hurts

09/08/2011 4.21am

Kidney ache stomach ache body feels in knots heart burn

09/08/2011 7.02pm

felt groggy and lethargic all day breathing laboured stomas less sore since using hydrocortisone cream

10/08/2011 3.58am

bottom sore wet pad from urine burning discomfort to buttocks from attempt to pooh

10/08/2011 8.53pm

Plans cancelled catheter blocked hoisting every hour or so is exhausting

11/08/2011 3.10am

bm and urine filled pad stomach ache menstruating feel emotionally rubbish

11/08/2011 11.54pm

well looked after but constant hoisting to change pad, sitting in wet is wearing. Went shopping wee'd in supermarket : ()

12/08/2011 5.43am

stomach ache wet pads joints ache menstruating position pain sciatic pain too hot

12/08/2011 7.04pm

relaxing hydrotherapy with new student not as thorough as usual but lovely nonetheless

13/08/2011 5.52am

long sleep interrupted only by bed and urine issues

13/08/2011 8.12pm

limited and exhausted by hoist watched a film running out of clothes / places to dry clothes. It's raining

14/08/2011 4.19am

hot dehydrated sweating bm in bed sore itchy groin kidney ache thirsty

14/08/2011 6.59pm

Catheter issue prevented my trip to the cinema. No pain but L hand forefinger aches had grumbling stomach and almost headache

15/08/2011 3.32am

position painful limbs pressing into the bed blisters on legs stretched wet pad uncomfortable one more day then catheter change feel scared

15/08/2011 8.03pm

still confined by blocked catheter but managed a trip round the park and delicious sweet potatoes for tea

16/08/2011 2.20am

wet pad and creased sheet making bottom sore preventing sleep, ankles sore, legs buttocks and shoulders painful

16/08/2011 4.33pm

catheter change really hurt cuffed bleeding very painful

17/08/2011 3.19am

catheter so painful and sore

17/08/2011 6.43pm

slept on and off all day still ridiculously tired a muggy head catheter stoma and surrounding area very sore

18/08/2011 5.06am

slight headache painful buttock twitching toes driving me crazy want to move can feel sciatic pain increasing

18/08/2011 6.25pm

still fairly sore and fatigued but managed to go into town catheter working well bar a couple of drips/spills on the pad

19/08/2011 3.42am

hot constipated kidney ache thirsty heels sore buttocks hurt catheter stoma aching passing glass sensation

19/08/2011 8.17pm

just back from a friend's birthday tea. Lovely but exhausting passing glass sensation again blood clots in catheter tube

20/08/2011 4.43am

passing glass sensation. Dry mouth. Neck pain. Bottom, heels, thighs sore

20/08/2011 4.52pm

Lovely day in town to collect daughter's laptop. Bought a watch. Felt almost perky

20/08/2011 9.19pm

Waves of excruciating passing glass sensation more like passing boulders! Blood clots in catheter tube, wet pad through

21/08/2011 4.04am

Woke in horrible pain of that passing glass sensation. Labia feels raw and sore. Wet pad but there is liquid in the catheter night bag

21/08/2011 7.15pm

Catheter seems to be draining again still painful with blood clots and clouded with sediment

22/08/2011 4.32am

Passing glass sensation but weaker than before. Limbs heavy and sore against the bed

22/08/2011 1.22pm

Phlebotomist struggled to get blood for riluzole tests feel drained and battered and sorry for myself!

23/08/2011 5.34am

Stomach ache and need to sit up. Need the toilet

23/08/2011 8.21pm

Catheter seems fine. Weekly shop then a wheel down to the bowling green. Happily tired

24/08/2011 4.45am

fitful sleep but relatively easy night discomfort bearable, screeching tom cats less so

24/08/2011 7.08pm

Not up to much today bit of neck ache and bottom pain can't sit right in my chair and my head rest is wonky

25/08/2011 5.01am

Bottom feels stretched and painful, neck hurts, leg heels and hips bearing down into the bed. Breathing slightly laboured

25/08/2011 9.04pm

exceptionally tired today slept a lot. Menstruating again but streaky brown. Feel angry. So does daughter. 2 carers also on

26/08/2011 3.10am

Passing blood clots painfully. Sitting on a crease. Limbs heavy and pressing into the bed. Hand cramps hurt

26/08/2011 7.01pm

Hydrotherapy day, Feel incredibly relaxed after a nap. All warm and glowing. The water relieved muscles I hadn't known were tense.

27/08/2011 6.34am

relaxed night woke a couple of times with pressure pain but got straight back to sleep and still feel really loose 

27/08/2011 9.25pm

Still really relaxed after hydrotherapy generally nice day dropped daughter at ice-skating, enjoyed the drive. Time in the garden. Lovely.

28/08/2011 4.28am

Basil cat is being all cute and sleepy at the foot of my bed warming my toes I'd be sleeping too if my bum cheek wasn't so sore

28/08/2011 7.51pm

slept a lot today drained but not too uncomfortable just no energy. Even the bipap seems hard work

29/08/2011 2.41am

Fell asleep at 8.15pm missed a gig woke an hour ago still tired and sore

29/08/2011 10.30pm

lovely relaxed day energy held out did a weekly shop then evening with friends

30/08/2011 4.15am

Only woke once needing to move. Postural pain. An otherwise reasonable night

30/08/2011 9.10pm

carer sick so non driver cover slow day but no particular discomfort. L hand unresponsive face itchy

31/08/2011 4.03am

Positional discomfort very tired can't sleep sticky heat thirsty dehydrated constipated kidney ache

31/08/2011 5.10pm

Feel wiped. I've done nothing but yawn and sleep sciatic pain has flared up so carer moving me at 20min intervals