Hydro

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.

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.

Hydro

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.

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.

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.

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

Hydro

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