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