Monday, 28 November 2011


Jo didn't do the full range of motion exercises and concentrated on the "walking technique" that Sharon had shown her. Unfortunately, Jo is taller and the arm position was quite painful. Due to communication difficulties, Jo continued to attempt that manoeuvre until the end of the session.

Visit from Wheelchair Engineer

Mark brought with him a new headrest and harness for Rachael's chair and after a discussion, said he would make another appointment to bring armrests and an assistant control panel.

Monday, 21 November 2011


Sharon did full range of motion exercises, focusing on Rachael's left arm and shoulder as Rachael reported that her arm had been generally weak and had even seized up completely whilst driving her wheelchair any distance. Sharon looked at Rachael's fingers on both hands and suggested that she should make a referral to the handsplint specialist on site.

Visit from Occupational Therapist

Yvonne came and agreed to install a ceiling track in the living room so Rachael can transfer to sit on the sofa.

Thursday, 17 November 2011

Visit from Physiotherapist

Angela came and demostrated how to use the Suction Machine. Angela also took Rachael's email address so she could send a copy of instructions before she posts it. Angela took the speech therapists number for future reference. 
Filter - Do not clean - must be replaced every 3 months
Yankeur (Mouth Piece) - wash and sterilise after every use
Recepticle (Spitoon) - wash in soapy water after every use
Hose - wash in soapy water after every use
The suction machine should be charged overnight. An amber light will show when charging. A green light will show when fully charged. Angela said she would post extra yankeurs.
Test pressure before every use by putting hand over tube. The pressure should never exceed 20k/Pa (inside measurements).The best pressure for Rachael is between 10 and 15k/Pa. This can be adjusted on the dial below the pressure window. 
Move yankeur from the top to the back of Rachael's mouth, and from the front to the sides of the tongue until clear of saliva.

Saturday, 5 November 2011

Catch up

I have had a hectic few days. On Friday, I cooked an amazing stew. When I say cooked, I mean that I bullied my PA to obey my instruction. We really enjoy our Masterchef boot camp sessions. My PA thinks he can't cook and I enjoy teaching him the rudiments. Bronagh spent the evening with me devising and designing her costume for a fancy dress Halloween do on Saturday.

On Saturday, my regular PA was off sick and so I went with Friday's PA and his 2 children to a museum. The Bradford Media Museum was enormous fun. Fortunately, his 10 year old was happy to entertain his 2 year old on the interactive exhibition whilst we browsed the photography displays, which were fantastic.

Outposts: Donovan Wylie was a disturbing and thought-provoking series of photographs from the 70s and 80s in Northern Ireland showing military instillations and an insight into the Maze Prison. It brought back many memories and also showed the frightening range of military intervention on the landscape itself. There was also a series from Afghanistan, but with less point of reference for me. It made less impact. We came out of this first floor exhibition greatly affected with a hollow feeling.

David Meadows: Early Photographic Works cheered me up no end. It follows a variety of people photographed in the 70s in Salford and Manchester and catches up with them in the 00s. I spent the exhibition transported down memory lane exclaiming at each shot, “I had that wallpaper!”, “I had that tanktop!”.

On Sunday, I was shattered and good for nothing, which was a relief as I had nothing to do. My daughter and her friend had been to a party and woke me in the early hours after which, I couldn’t sleep.  On Monday, Friday PA was back doing his own shift again: more cooking. On Monday evening, his girlfriend came to tea and we showed off our new skills. I had taught him to make sauce from scratch and he was like a puppy with a new trick explaining how he had made a roux. I was very proud and it was an exceptionally  tasty meal.

On Tuesday, I went to Trafford General for a Catheter change. It was particularly painful and gory. When I had the procedure done initially, I had no idea that I would have to have the tube yanked out bleeding, every 5 weeks. I may have felt differently about having it done. Just when all I wanted to do was curl in a ball and feel sorry for myself, I had to entertain visitors. For anyone else, I would have refused but my sister has flown halfway across the world and is going back to Australia on Saturday. It was lovely to see my nieces for the first time in nearly 2 years.

On Wednesday, we were struck down by another bout of staff sickness and yet again, Friday PA stepped into the breach. This time, he took me and my 2 year old companion to Chester Zoo, where we met up with the Aussies again. It was a fabulous day out and I thoroughly enjoyed myself but I am truly suffering for the exertion, today.

I have been eating well all week without needing a feed overnight. I have felt amazingly strong and I have had more energy than I can remember. I put it down to a tiny amount of weed taken last week. If I can have a week like this one every once in a while, I think it’s worth doing.

I have started a craze. Since renewing my friendship with D last week, which has meant the world to me, I have heard from 4 other people, who I had lost touch with. Although I paint myself as a voluntary recluse, I am enjoying my renewed friendships. For a while, when I thought I was about to die, I was overcome by false nobility. I lost contact with friends and convinced myself that it was a generous act to 'let them go'. I was wrong.  

Listening to Indigo Girls: Ghost 
Remembering... Remembering being young and vibrant and vital and thanking you for validating that memory x

Friday, 4 November 2011


Sharon (Session Supervisor) went through full range of motion exercises focusing on shoulders and quads. Rachael was noticeably more relaxed and loose-limbed afterwards.

Email exchange with Macmillan Nurse

Over a series of emails between Rachael and Claire (Macmillan Nurse), Claire enquired about suction machine and medication. Claire agreed to send letter detailing new arrangements for enteral administration of medication.

Tuesday, 1 November 2011

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.

Email Received from Physiotherapist

A emailed to set appointment to show how to use the suction machine. Appointment set for 17/11/11 at 10:30am.

Catheter change at TG Hospital

Rachael attended a catheter change appointment. Stuart (urology nurse) struggled to remove catheter tube and Rachael found it extremely painful, the worst catheter change to date. The trouble seemed to be that the balloon, when deflated, catches and forms a ridge making it extremely difficult to remove.