Tuesday, 24 May 2011

Catheter change at TG Hospital

Stuart found that there was still slight "cuffing" and minor bleeding after the change, but Rachael felt there was an improvement after the last two changes. Discussed flushing with citrus juices to alleviate problems with sediment in tubing. Stuart performed a bladder wash and trained staff in it's use. Stuart authorised Rachael's staff to do the bladder wash when needed and is happy to confirm that should professionals/doctors require it.

Wednesday, 11 May 2011

Clinic at H Hospital

Dr E ran through usual check-list of Rachael's general health and welfare. Discussed the new Bipap and it's benefits. Briefly discussed problems with benefit assessments under new government guidelines. Agreed to contact Preston Wheelchair Services regarding reassessment of headrest; to contact Physiotherapist regarding advice for carer's to alleviate pressure, adjust Rachael's seating position and general ergonomics. Dr E advised Rachael to remove any spares and any packaging in Just in Case kit. Dr E suggested that Bronagh might be able to cutout labels and refix them to make the mediaction fit. Spares could be put away.

Tuesday, 10 May 2011

GP Appointment

After 3 attempts, a blood sample was collected for Riluzole testing.

Sunday, 1 May 2011

May 2011. In which I have highs and lows.

01/05/2011 9.40am
I am so tired after yesterday but have got a relaxing  day planned.
02/05/2011 6.52pm
Fairly quiet day today. feel quite good at the moment.
03/05/2011 7.07pm
Quiet day spent with my carer and daughter.
04/05/2011 4.44pm
Quiet day but am now going out to a meeting. Hopefully not too long.
05/05/2011 4.47am
Have suffered with cramps all night and am now exhausted.
06/05/2011 7.01pm
Yesterday's bad night's sleep has left me wiped out all day.
07/05/2011 3.19am
Suffering with cramps and soreness from pressure spots.
08/05/2011 9.17am
Found yesterday's post letter from from JC + we have a query on your claim (esa) panicking fluttering breath shaking feel really unwell.
09/05/2011 5.19am
feel stiff stomach cramps fluttery breath clammy. Benefit inspection worrying can't sleep.
09/05/2011 7.29pm
couldn't deal with benefits so went out! I know... Soon. Tired still shaky but calmer bipap helps.
10/05/2011 3.55am
back hips and ankles sore stomach cramps
10/05/2011 6.38pm
tiring day. 3 works operatives to do various jobs, lots of effort to communicate. Blood test took several attempts. Weary.
11/05/2011 2.26am
pressure sore on my bottom, blister on my thigh, bruised back, stomach cramps.
11/05/2011 11.04am
feeling quite chirpy long drive ahead. Bipap worked wonders.
12/05/2011 3.24pm
Shattered after clinic, neck, bottom and back pain, can't sleep, ankle agony
12/05/2011 7.41pm
relaxing day, well cared for clean and fully hydrated with no appointments or needles
13/05/2011 7.30am
ankle and pressure on bottom quite sore but feel quite invigorated after bipap
13/05/2011 7.34pm
brilliant day out. Leisurely visit to a nuclear bunker! Reliving the height of my protest days. such fun, so thoroughly tiring
14/05/2011 3.45am
Hot, dehydrated positional pain headache eyes stinging
14/05/2011 8.16pm
productive day feel quite refreshed for the hour. Mainly skyping daughter in the loft with instruction on what goes where
15/05/2011 2.04am
feels like passing glass. Blood clots in catheter tube. Lots of sediment in urine.
15/05/2011 9.13am
carer phoned in sick. bit nervous
15/05/2011 5.54pm
fun times sorting through old boxes from the loft with my daughter
16/05/2011 3.05am
coughing, spluttering aching sore bottom ankles painful
16/05/2011 6.16am
constipated backache really painful
16/05/2011 8.40pm
very tired after an active day overseeing dinner preparation and sit down family meal.
17/05/2011 4.10am
hot dehydrated positional pain headache itching unbearably eyes stinging
17/05/2011 11.27am
managed to fit into my favourite pants after seemingly a lifetime in sarongs and blankets. Promptly shat myself!
17/05/2011 7.07pm
clean dry and back in grown up clothing ;-)
17/05/2011 10.18pm
still feeling reasonably lively for all the pulling prodding and exercise in getting clean enjoying iplayer whilst daughter is at the gym
18/05/2011 3.22am
pillow slipped neck and back ache
18/05/2011 8.17pm
great tasting food lovely time in the garden between rain bursts bits of diarrhoea and headache but bearable
19/05/2011 3.58am
neck and hips aching catheter tube not draining blood clots in urine
19/05/2011 11.26pm
pretty shattered after a tiring day in the garden
20/05/2011 3.11am
eyes stinging very tired can't sleep ankle and foot turned over ow
20/05/2011 7.52pm
excellent hydrotherapy session feel tired now but much more loose and relaxed
21/05/2011 4.59am
Stiff joints positional pain but have enjoyed a good sleep
21/05/2011 8.22pm
frustrating day exceptionally tired
22/05/2011 4.35am
so hot, dehydrated and sweating eyes stinging and foot splint unbearably painful
22/05/2011 10.33pm
lovely day slightly marred by my period pains and sensation of passing glass when urinating blood clots in catheter tube
23/05/2011 3.19am
itching driving me to distraction so much worse in bed than in chair much more immobile constricted
23/05/2011 8.01pm
full day: set up ginger beer home brew, went to park; watched bowls looked at boating lake saw waterfall cuddled cat
24/05/2011 4.07am
bit of gut ache, drooling like a saint Bernard! Lungs great
24/05/2011 4.25pm
catheter change tube cuffed again. It hurts. I am worn out
25/05/2011 4.04pm
catheter stoma very tight and sore I have defecated in bed
25/05/2011 8.48pm
still very tender after catheter change started my period with a vengeance and a touch of diarrhoea but good care and plenty of fluids
26/05/2011 5.08pm
sleepful night ankle and bottom painful
26/05/2011 5.25pm
visit from a dear friend, still sore and fairly exhausted but glowingly happy
27/05/2011 4.09pm
period pains! Pressure points sore and joints aching. Need to move and wipe my face
28/05/2011 3.51am
foot and ankle ache bottom painful frustrating can't move dribbling
28/05/2011 4.41pm
rain stopped play for me attending the local carnival so spent sedately baking and sorting some correspondence
29/05/2011 1.05am
shoulder ache bottom painful ankle hurts can't sleep
29/05/2011 7.04pm
ridiculously tired all day, sore bum cheeks, shooting pain, torso slumping more than usual. constipated
30/05/2011 2.17am
Hot sweating and dehydrated position pain bottom painful
30/05/2011 4.57pm
Peaceful: daughter revising hard, carer putting major shopping trip away. I had run out of toiletries completely. I'm catching up on emails
30/05/2011 11.32pm
what a fantastic evening. Fire in the garden (deliberate!) and ginger wine in the belly. Better than baclofen, ha ha
31/05/2011 5.23am
too hot, could do with a drink and a move but still relaxed. Slight headache maybe kick back from last night's hilarity?
31/05/2011 5.51pm
chair clean, self clean, house clean, sister skyped daughter on way home emails sent OT seen a productive day. Now sleep.