Clinic at H Hospital

Dr E had a student with him throughout the appointment. Rachael discussed the dry skin on her face and he said to continue using emollient cream. Rachael also discussed her respiration and the use of her Bi-Pap, stating everything was ok. Rachael did express concern that she sees a different doctor everytime she has an appointment at Wy Hospital. The last time, the doctor didn't seem to have read her notes as he went over old ground regarding blood gases and Rachael's need for the Bi-Pap. The doctor didn't understand or pay attention to anything Rachael was saying. Dr E expressed his apologies that Rachael had encountered that. Rachael and Dr E agreed that of there was anything important to note, she would write it down before any appointment - but noted that Rachael has no concerns at the moment. Dr E noticed a deterioration in Rachael's speech which is to be expected. Rachael commented that the eyegaze was still working well. She also showed Dr E her rig. Rose and dietician had a look and all agreed it was overdue for a replacement. Rachael discussed the option to converting to a different type of tube, with a balloon. Dr E and Rachael agreed that the best option is the low maintenence tube she has at the moment. Dr E said he would book Rachael in for a day appointment for replacement until tube can be refitted. Rachael expressed her concern about needing a shorter replacement period due to blocking and clotting, but told Dr E that TG Hospital were aware and dealing with it and any issues that arose.

Rachael went to see Julia (Occupational Therapist) and Sarah (Physiotherapist) who discussed Rachael's curling fingers and toes. They both felt that Rachael needed a further physio review and said they would pass referral to community team. They also mentioned positional pain and pressure in Rachael's sciatic nerve. Julia suggested that Rachael needs a ceiling track hoist in the living room and a bespoke recliner chair in which to transfer during the day as the wheelchair is for mobility, rather than for rest/long periods of time. Julia agreed to make that referral to the community Occupational Therapist.

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.

Respiratory Appointment at Wy Hospital

Blood gas test results were normal. Bipap serviced by nurse. Dr B's registrar checked Rachael's cough response and suggested Rachael trial a cough assist machine. The registrar said he would set-up another appointment and get Rachael involved in the next 2 months.

Hydro

Simon took Rachael through full range of motion exercises, focusing on kicking exercises. Simon and Rachael both felt the kicking exercises were particularly effective and well done.

GP Appointment

After several failed attempts, blood was finally taken from Rachael's right hand, between the first and second knuckle. Results came back with no problems detected. Next appointment arranged for November.

Catheter change at TG Hospital

Rachael had had a completely blocked catheter tube for over a week and experienced extreme discomfort when the catheter was removed. Stuart said the pain was due to "cuffing". Stuart changed catheter type to one that had an open end to try and prevent blockage again. Stuart said that if catheter blocks again, to go to A&E or district nurse.

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