Friday 26 August 2011

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.

Monday 22 August 2011

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.

Tuesday 16 August 2011

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.

Monday 1 August 2011

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