Wednesday, 29 June 2011

Visit from Engineer

Michael changed the filter in the Bipap and serviced it for another 12 months.

Monday, 27 June 2011

Email received from Dietician

Email received to ask if any problems relating to home enteral feed have arisen. Rachael replied that none had.

Friday, 24 June 2011


Rachael went through full range of motion exercises, focusing on her ankles, thighs and shoulders. Rachael is still having trouble with stiff shoulders and a noted increase in difficulty in using the wheelchair control panel.

Thursday, 23 June 2011

Gynaecology Appointment at R Hospital

A nurse attempted to scan Rachael for coil positioning once Rachael's bladder was full, but noted Rachael's womb was facing the wrong way. After discussing whether Rachael could position her legs to enable internal scan whist seated in the wheelchair, the nurses found that they could not find a hoist anywhere in the infirmary. Another nurse asked for Rachael's bladder to be refilled  so she could attempt another external scan. Nurse finally located coil sitting low in Rachael's cervix and advised it may need to be replaced. Dr P came and said he would send letter for coil replacement.

Friday, 17 June 2011


Rachael explained to Sharon about her bad back. Sharon did some upright exercises and freed Rachael's hips and spine. Rachael felt immediate and total relief from the pain she had experienced. Sharon went through full range of motion exercises. Rachael has not required painkillers since this session.

Tuesday, 14 June 2011

GP Appointment

Rachael went to the doctors with severe pains in her lower back, hips and left leg. She had awoken in the night in agony, having complained the evening before of some discomfort. Dr G suggested that Rachael's position in the wheelchair nay have trapped the sciatic nerve. Dr G asked if Rachael had a review booked with Preston Mobility Services to change ergonomics of her wheelchair. Wheelchair services are due to phone with an Occupational Therapist visit in the next 2 weeks. Dr G discussed painkillers and suggested a cocktail approach. Rachael should increase Pregabalin to 200mg twice a day, and take paracetemol as required. Dr G prescribed Codein liquid, 10ml for up to 4 times a day, and Naproxen, up to 500mg twice a day. Rachael expressed that she didn't want to increase Pregabalin as it is hard to taper back down and the effect is unpleasant in the long term. Dr G said to see if Rachael feels she needs it. Dr G asked for a urine sample - given. Results were clear.

Thursday, 9 June 2011

Gynaecology Appointment at R Hospital

Rachael had to wait for an hour before being seen as the clinic was running behind schedule. Dr A asked Rachael about Norethisterone. Rachael said GP had told her to reduce Norethisterone to 1x 5mg/day from day 5 to day 26 of her menstrual cycle. Dr A asked Rachael how her periods were and Rachael confirmed that they were still heavy. Dr A said the Mirena Coil had been in for over a year now and should be working correctly. Dr A advised Rachael to have a scan to see if the coil was still present. He said it could be replaced if the coil has fallen out, or if it's still there, Rachael may need to stop taking Norethisterone for a short time to test if coil is working correctly. Appointment for scan made on: 23/06/11.

Wednesday, 8 June 2011

Respiratory Appointment at Wy Hospital

Blood gas test was normal. Debbie checked machine and confirmed with Rachael that all was going well with Bipap. Rachael then saw Dr B's registrar, who spoke about a cough-assist machine and explained its use. Rachael didn't feel one was needed at this time but is aware that the clinic will provide one if and when it is necessary.

Friday, 3 June 2011


Rachael had a full session in the pool. Simon worked on Rachael's thigh and shoulder muscles. Simon noticed that Rachael's forefinger muscles were shortened, causing a constantly bent finger. He agreed to look into options for splinting.

Wednesday, 1 June 2011

June 2011. In which I have some pain, also fun with daughter and visiting

01/06/2011 3.41am
sore ankle buttocks painful hot dehydrated covered in sweat eyes stinging
01/06/2011 9.46am
clean fed watered getting some gardening done then baking later or at least advising the chef!
01/06/2011 9.48pm
fairly placid day quite a lot of discomfort dealt with effectively by carer but frequent enough to incapacitate me.
02/06/2011 4.06am
sore buttocks ankle and shoulders dry and dehydrated
02/06/2011 8.20pm
absolutely shattered trip to town wore me out
03/06/2011 2.37am
shooting pain from buttock down left leg need to move
03/06/2011 4.56pm
a fantastic hydrotherapy session feel exhausted but such a good workout my hands shoulders and thighs feel amazing so tired though
04/06/2011 2.29am
feeling like passing glass so hot dehydrated and sweating pain in urethra is excrutiating
04/06/2011 9.11am
P.A. did a bladder wash. Such a relief! Now if I could only fix the itching
04/06/2011 9.23pm
Cool day visit to auntie recovering from a serious illness she looked amazing I was very happy. I poohed and had to came home! Heyho
05/06/2011 3.56am
Unbearably hot again pressure in my left buttock pain all the way to my thigh. Profiling bed but can't press the buttons!
05/06/2011 8.19pm
Relaxing day lots of little household chores out of the way
06/06/2011 2.19am
Hot itching sneezing snot all over my face pain in my buttock and left leg
06/06/2011 6.37pm
daughter unwell. I hate that. Taught my P.A. my recipe for pastries and spent the afternoon baking
07/06/2011 3.04am
hot dehydrated and sweating glass sensation sore buttocks ankle back and neck
07/06/2011 9.01pm
tired but comfy some urethral discomfort but short lived and infrequent
08/06/2011 1.57am
passing glass sensation sore ankle buttocks painful shoulders and neck ache
08/06/2011 9.09am
such a relief to be up and about and hydrated! Water is great stuff
08/06/2011 8.34pm
carer went home sick. Exhausting trek to lung clinic then exhausting temp carer
09/06/2011 5.36am
snot all over my face sneezing pain in urethra
09/06/2011 1.14pm
just back from gynae clinic mirena not working waiting for a scan appointment very tired
10/06/2011 3.45am
ankle and buttocks painful but itching stopped
10/06/2011 7.06pm
fun day. Made ginger beer with P.A. Went shopping, got market bargains and excellent cheese. Tasting session was morish
11/06/2011 5.07am
right ankle agony splint worse than useless
11/06/2011 9.10am
Off to a local carnival this afternoon. Hope I stay feeling as good as I do now. My lungs haven't felt so strong in years since I was swimming
11/06/2011 9.08pm
So much fun at the parade. Well worth the effort. I loved it. Slightly dehydrated very tired
12/06/2011 4.50am
sneezing snot running down my face R ankle hurts sore bottom and shoulder blades. itching
12/06/2011 9.03am
P.A. on constant nose and eye wiping duties still itching like a bear but I'm up and about and ready for a shower
12/06/2011 7.06pm
daughter revising P.A. cleaning house and me. Dozing fitfully all day.
13/06/2011 4.16am
Hot dehydrated sweating eyes stinging position pain nose running can't sleep itching everywhere
13/06/2011 6.37pm
lower back ache shooting pain spent all day dosed up on painkillers but still in pain
14/06/2011 3.33am
painkillers wore off about 3 pain all down that back of my hip to my leg and knee
14/06/2011 6.56pm
PA off sick stand in carers and back ache bad combo! Dr gave a cocktail of 4 medicines make me woozy but still in pain
15/06/2011 2.24am
drugs worn off back hip leg pain severe constipation
15/06/2011 7.17pm
struggled through demos interview on assisted dying then doped and woozy from painkillers feel nauseous
16/06/2011 4.30am
lower left back so painful headache and neckache hot and dehydrated
16/06/2011 7.14pm
sick dizzy hip and back pain very tired diarrhoea hoisting so often hurts and wears me out. bottom sore
17/06/2011 3.59am
back pain ankle hurts hot sweating eyes stinging itching head
17/06/2011 5.45pm
hydrotherapy was amazing! The relief of hitting the water and feeling my body relax. Where was searing pain, now a dull ache
18/06/2011 5.58am
can't believe how tired I have been woke several times but slept deeply and well
18/06/2011 8.59pm
took it easy today organised a few household jobs daughter revising hard for her last few exams
19/06/2011 4.04am
sore heel and neck otherwise a relaxed night fell asleep straight away with none of the usual yawns and spasms
19/06/2011 12.29pm
clean, dressed, good to go. Gig at the footy club this afternoon but driver carer is off sick. :(
20/06/2011 3.28am
passing glass sensation too hot and dehydrated sore neck weight of body and bedding wearing down
20/06/2011 7.03pm
fun day baking slight shortness of breath so had an extra do on the bipap
21/06/2011 2.17am
ridiculously hot can't sleep dehydrated feel heavy heels sore buttocks ache
21/06/2011 9.46pm
visited mum. Journey was too much in uncomfortable courtesy car legs and buttocks ache dehydrated
22/06/2011 5.49am
ankle hurts hot sweating slight headache still tired but slept right through
22/06/2011 8.04pm
quiet day slept in the afternoon and most of the evening saw my sister and nieces in Australia via Skype :)
23/06/2011 4.00am
passing glass sensation sore ankle and bottom painful constipated
23/06/2011 5.19pm
gynae appt scanning for the defunct mirena coil no hoist done with difficulty and the obligatory patronising. shattered
24/06/2011 2.29am
heels and buttocks sore ankle agony splint pressing on the ball of my foot
24/06/2011 5.33pm
Hydrotherapy was excellent got to go this week as a bonus extra as someone else couldn't make it :)
25/06/2011 5.42am
foot turned over ankle hurts and I can't get back to sleep but then I have slept soundly since 7pm!
25/06/2011 6.33pm
shoe shopping with daughter was lovely. Drained but thoroughly worth it felt strong all day.
26/06/2011 4.52am
slept right through woke with postural pain ankle and neck sore but not as severe as previously
26/06/2011 7.33pm
made the most of sunshine and energy, went to a local carnival noticed increasing difficulty using wheelchair keypad
27/06/2011 6.01am
hot dehydrated sweating and itching eyes stinging bottom painful but slept soundly again long may this continue
27/06/2011 5.57pm
Went for a wheel through the woods-it was gorgeous slightly dodgy stomach. Daughter at school nurse with nausea and dizziness
28/06/2011 4.47am
agony, severely overheated, horrible stabbing pain in my back lower- middle right.
28/06/2011 3.58pm
after a bit of ROM exercise and plenty of fluids the pains went and I caught up with my sleep. Daughter feeling much better.
28/06/2011 11.01pm
Fleet Foxes gig was excellent
29/06/2011 6.48am
Slept like a baby. Have just poohed the bed so that feels unpleasant but am still euphoric from last night
29/06/2011 3.19pm
still feeling strong. slowed the pace right down today slight neck ache but a good day feeling hungry which is rare and welcome
30/06/2011 4.30am
hot. painful r. kidney again feel dehydrated stomach churning both an ache and a stabbing pain r lower-middle of my back
30/06/2011 7.26pm
very slow day, tired and sluggish constipated with aching r kidney. PA on holiday, stand in carer