Friday, 29 July 2011


Rachael was very tired and was given manipulation on her ankles as she struggled to stand in the water. Sharon took Rachael through full range of motion exercises.

Monday, 18 July 2011

Gynaecology Appointment at R Hospital

Rachael rang to cancel appointment in the morning, but Dr A's secretary insisted Rachael attend with menstrual chart. Rachael explained that she had not menstruated so felt she did not to come in. Secretary again insisted Rachael attend appointment. Rachael waited 45 minutes to be seen by Dr A who asked whether Rachael had had a period since she was last there. Rachael said no! Dr A said the Mirena Coil is now working so will not need to see Rachael again, although he did say to contact them again if any further problems arise. Appointment lasted approximately 1 minute.

Friday, 15 July 2011


Rachael went through full range of motion exercises, focusing on Rachael's shoulders, which were considerable more stiff than previously. Simon did some exercises with Rachael's neck and left hand. Rachael's ankle was quite weak, and she scraped her toes when she attempted to walk.

Wednesday, 6 July 2011

Visit from Engineer

Mark arrived but no occupational therapist present. Mark attached a new headrest to Rachael's chair. This has not proved effective to keep Rachael's head from lolling when tired/over bumps. Discussed Rachael's increased difficulty in using control panel. Mark tried to design a control panel add-on. Mark said that Rachael's idea to move "rabbit" and power button to the right-hand, unused switches was unfeasible. Also discussed wheelchair restraints to keep Rachael upright. Rachael explained that she is reluctant to use the lap belt as it rubs against her rig and catheter risking damage. Mark explained that he could not provide shoulder straps without lap belt for fear of strangulation, if Rachael slipped down in her chair. Mark agreed to provide a different type of lap belt material for Rachael to look at. Mark also agreed to provide a Roho cushion to try and reduce Rachael's sciatic pain. Mark agreed to contact Rachael with a further appointment for a joint visit with an occupational therapist.

Tuesday, 5 July 2011

Catheter Change at TG Hospital

Stuart found Rachael was still "cuffing". Rachael bled and felt extreme discomfort throughout the change. The stoma has continued to weep more than usual since.

Friday, 1 July 2011

July 2011. In which I have a lot of pain, happy times with family and some good sleeps.

01/07/2011 4.48am
kidney ache building up again. I need the toilet. Bottom and heels sore. Too hot and dehydrated
01/07/2011 7.24pm
feeling quite well marred by call from school daughter sick and dizzy again
02/07/2011 3.49am
sore ankle and bottom slept fitfully too hot
02/07/2011 3.08pm
lots of little outdoor jobs overseen Daughter feeling a bit better Feeling quite well myself though wheelchair control hand still playing up
03/07/2011 4.44am
hot dehydrated constipated severe kidney pain can't move bed control snotting and sneezing
03/07/2011 9.19am
at last a BM! In a foul and foetid noxious cloud still a bit queasy but the pain has gone. Senna, movicol and suppositories
03/07/2011 8.10pm
relaxing day lots of effort to do anything l hand fairly unresponsive well looked after clean hydrated and rested wouldn't want it every day
4/07/2011 4.01am
stomach churning legs pressing into the bed heels sore hips buttocks and shoulders painful
04/07/2011 8.07pm
day of waiting for garage quite tired when I got out lovely walk around the park poohed sat on it over bumpy roads home no hot water
05/07/2011 4.58am
Bright sunshine snotty nose positional pain no sound on eyegaze passing glass sensation
05/07/2011 8.50pm
catheter change. Cuffed again. Incredibly tender and aching. Flatulent sensation in bladder!
06/07/2011 4.49am
Catheter stoma and surrounding area very sore. Position uncomfortable heels and bottom stretched and painful.
06/07/2011 1.51pm
New catheter now down to a dull ache Busy morning w/ch engineer then phlebotomist Totally wiped me out
07/07/2011 2.43am
Bowel movement. Most uncomfortable! Also now aware of how much my heels and bottom hurt
07/07/2011 6.35pm
Spent all day on personal hygiene (in between ferrying daughter around) being so manhandled has shattered me - early night  ; )
08/07/2011 6.03am
Slept straight through deeply. Quite dehydrated and aching position pain but feeling the benefit of sleep
08/07/2011 7.13pm
relatives visiting from Scotland staying for a few days My little nieces are amazing if exhausting slight shortness of breath extra bipap
09/07/2011 6.06am
Woken by youngest niece "reading" stories lovely. Sore ankle fixed quickly. Sneezing and snotty. Sorry sister-in-law!
09/07/2011 8.53pm
excellent wheel out if exhausting and r hand weaker my younger niece walked holding my wheelchair arm happy times
10/07/2011 4.41am
buttocks and neck ache but a restful sleep breath and sleep much easier since using bipap
10/07/2011 8.39pm
Nephew's baptism, church heavy with candles and incense Difficulty breathing soon recovered very tired
11/07/2011 2.33am
ankle and bottom hurt can't move dribbling into neck with cold pools forming
11/07/2011 7.53pm
excellent tea made under my instruction. I had a taste. Good pastry. Family gone back to Scotland. Tiring but great fun to see them.
12/07/2011 3.45am
cat sick on duvet can't sleep
12/07/2011 8.14pm
incredibly tired today drained now visitors have gone. Slept or dozed most of the day
13/07/2011 4.45am
horrible lower - middle back/ kidney pain feel sick and clammy
13/07/2011 6.48pm
Another niece visit with her new baby brother. Hectic! Quite a sore sciatic pain but so tired I'll sleep anyway
14/07/2011 5.11am
sore ankle and thighs heels hurt, bottom has pressure pain, eyes stinging need to move can't press bed control
14/07/2011 8.00pm
quiet day dealt with tax and other financial returns slept then did a weekly shop. Conspired with daughter for friend's birthday.
15/07/2011 5.36am
hot dehydrated constipated kidney ache catheter and urethra have the passing glass sensation
15/07/2011 7.19pm
fantastic hydrotherapy session feel relaxed in places I didn't know were tense sleep now
16/07/2011 6.37am
overslept!!! usual ankle and bottom pain but still feel so relaxed
16/07/2011 9.42pm
Managed to drag myself to hardware shop for bits that I thought I had but didn't. Still ridiculously relaxed can't lift head or anything
17/07/2011 5.15am
BM in bed not so good, wonky r ankle flopped over and sore but another excellent sleep. A definite hydrotherapy bonus.
17/07/2011 9.19pm
taken it easy all day apart from minor teen catastrophe for daughter! That sorted, muscles still relaxed breathing easier thirsty
18/07/2011 5.08am
heels sore buttocks and ankle hurt making sure daughter gets off to school trip in half an hour
18/07/2011 7.55pm
spent the day at the Infirmary, totally wasted journey just to confirm that my coil is working fine. sumptuous tea made up for it.
19/07/2011 6.25am
One joint last night, followed by the best night's sleep I can remember. woke feeling thoroughly refreshed
19/07/2011 8.37pm
Incredibly strong all day. I was able to lift my elbows slightly and sometimes adjust my back position. I feel amazing
20/07/2011 6.42am
another excellent sleep I can certainly feel the benefit. I don't feel as good as yesterday but definitely above my average
20/07/2011 9.09pm
Felt so strong that I went with friend and his small son to a safari park Great Fun Tired not exhausted still able to lift hands to chin
21/07/2011 6.58am
another refreshing night Slight BM in bed More due! Sign I ate real food yesterday I'm getting bigger bra no longer fits
21/07/2011 7.08pm
took car for a minor repair then to visit my parents feel quite drained
22/07/2011 5.19am
after arguing with carer last night a disturbed sleep, passing glass sensation and positional discomfort
22/07/2011 11.09am
a fairly rubbish morning tired grumpy menstruating I found another few blisters on my leg from catheter tube
22/07/2011 11.32pm
excellent afternoon and evening  A little weary and l hand aching but still able to move my back a little
23/07/2011 6.26am
Hot dehydrated sweating but an otherwise reasonable night
23/07/2011 5.51pm
visited my auntie with my brother lovely although we could barely understand one another scary car ride shattered me
24/07/2011 5.42am
Ankle aching tired but can't sleep sticky and itching
24/07/2011 8.19pm
Quiet day slept a lot felt groggy and sore in general
25/07/2011 4.57am
position pain sore heels ankles thighs and buttocks blisters on my legs painful mild choking episode was quite scary
25/07/2011 10.06pm
Day around the museum wore me out but worth it still menstruating
26/07/2011 4.37am
Passing glass sensation is back toes bent and painful bottom sore legs ache
26/07/2011 11.05am
up washed and dressed drugged up bladder flushed through feel much more human
26/07/2011 8.49pm
sciatic pain causing a disturbed evening 
27/07/2011 4.17am
BM following an uncomfortable night lying on a crease now soiled sheets heels so sore I could cry still menstruating
27/07/2011 7.43pm
fairly placid day daughter away at her auntie's napped extensively and watched too much telly
28/07/2011 2.47am
excruciating sore bottom feels like my skin is being ripped apart in flames
28/07/2011 8.50am
Being pampered by lovely carer bottom grateful to Sudocrem for cooling gentleness
28/07/2011 7.42pm
Woke up 10am from impromptu nap tired and aching continued all day bottom stretched and sore exhausted hard to focus brain-freeze headache
29/07/2011 5.45am
hiccups sore bottom excessive drooling lower back pain need bowel movement
29/07/2011 10.54pm
Hydrotherapy bipap then a nap I feel amazing so strong
30/07/2011 5.50am
brilliant night woke once needing help to adjust neck position then straight back to sleep
30/07/2011 7.57pm
easy day still feeling relaxed and alert to early evening may have shown off a bit quite tired now L hand largely unresponsive
31/07/2011 5.43am
restful sleep woke with some position pain and slight neck ache
31/07/2011 7.05pm
went to the rush cart festival at the lake tiring but fun slightly wonky in my chair put pressure on my sciatic nerve


Sharon continued her work on ankle, thigh and shoulder muscles. Rachael managed to walk with Sharon's help for 8 widths (tiny pool).