Wednesday, 30 March 2011

Respiratory Appointment at Wy Hospital

Rachael had some tests conducted that showed very low levels of CO2. Dr B said CO2 was essential for triggering the breathing progress, and because there was not enough in Rachael's system, this was causing Rachael to feel breathless. Dr B felt that Rachael's main problems were not to do with respiratory function but bulbar deterioration. Dr B said Rachael may benefit from using a Bipap to offer respite and increased strength, although he did point out the danger that Rachael may become increasingly dependant on the Bipap. Dr B suggested to make an appointment to train a carer to work the machine to enable better quality of life for Rachael. Appointment scheduled with Occupational Therapist on 26/04/11.

Thursday, 3 March 2011

Gynaecology Appointment at R Hospital

Rachael attended a gynaecology appointment. After waiting for an hour and a half to see the doctor, Rachael requested equipment for a flush. A gynaecological doctor came in during flush to discuss Rachael's progesterone administration. We asked if Rachael could reduce the amount of doses taken in a day as Rachael had difficulties swallowing. The doctor suggested she reduces Norethisterone down from 3 x 5mg/day to 2 x 5mg/day in a morning only. Rachael asked if it came in liquid form. The doctor said it did not but suggested crushing the tablets and flushing them through if difficulty in swallowing increased. The doctor suggested the Mirena Coil should now be functioning correctly and we could perhaps start reducing Progesterone intake indefinitely. Rachael asked for copy of the session notes.

Tuesday, 1 March 2011

Orthotics Appointment at B Hospital

Rachael attended Orthotics appointment to check fittings for new boots. The boots had a softer sole so Rachael's toes kept curling under and was uncomfortable. After much toe rearranging, the nurse said she would get the boots altered with the sturdier soles and larger velcro straps. After looking at Rachael's older boots, the nurse said to bring the boots in for repair on the velcro straps when new boots are picked up. The nurse said she would ring when new boots had been altered.

March 2011. In which I enjoy the garden and get flu

01/03/2011 4.57am
headache dehydrated position pain ankles ache
01/03/2011 9.21pm
wonderful sunshine spent am with cat and carer in the garden then orthotics too tired for eye gaze communication tricky
02/03/2011 1.17am
cramp spreading everywhere
02/03/2011 9.34am
Financial issues need sorting but consignatory is in labour! Which is great news lot of blood clots in urine slight kidney ache
02/03/2011 11.21pm
In bed after a lovely time in the garden and with my daughter and carer tired but relaxed
03/03/2011 2.07am
not comfy back painful ankles hurt
03/03/2011 6.55pm
shattered after gynae appointment ran over. Dehydrated and bumpy ride home hurt my neck despite collar
04/03/2011 1.14am
neck ache and back ache generally uncomfortable difficult to catch my breath
04/03/2011 11.03am
nearly passed out couldn't get a full breath carer nearly as scared as me
04/03/2011 10.20pm
gradual improvement throughout the day peaceful evening napped a lot!
05/03/2011 2.34am
Bedding slipped postural pain and chill woke me feel like crying
05/03/2011 10.39am
neck cramp couldn't let my carer know what was wrong really frightening
05/03/2011 11.18pm
great time shopping and haircare with daughter and carer
06/03/2011 1.57am
woke with postural pain hot and dehydrated difficult to catch breath headache
06/03/2011 9.16pm
daughter and her school friend having a sleep over friend's mum popped round carer had take away that smelled lovely
07/03/2011 4.54am
up for hours limb ache pressure points sore rasp in throat can't cough so tired eyes burning
07/03/2011 8.46pm
daughter ill sounds fluey i have similar symptoms but not as bad wish I could sit on her bed and mop her brow hate MND
08/03/2011 12.54am
dry cough aching limbs hot and cold and tired head thumping
08/03/2011 3.24pm
head hot throat dry having lovely time with carer in garden shower helped napping often plenty fluids
08/03/2011 11.48pm
woke panicking breathless chest fluttering body shaking tomorrow's carer rang sick anxious about bank staff
09/03/2011 3.17am
still can't sleep scared of everything can't relax tense and painful
09/03/2011 11.52pm
so indescribably tired aching and sore. Throat hurts
10/03/2011 4.48am
cramp in calf aching and gasping for breath can't move to release leg everything stiff and sore
10/03/2011 2.02pm
10/03/2011 6.47pm
no voice eyes tired exhausted fasciculations of my tongue
11/03/2011 2.17am
painful aching breathing laboured hot headache
11/03/2011 11.30pm
Fantastic hydrotherapy session feel really loose and happy. My chest and back feel like new!
12/03/2011 3.02am
Slept really well when I was asleep but still suffer pressure pain
12/03/2011 9.05am
still feeling the benefit of hydrotherapy limbs loose and feel happy
12/03/2011 7.09pm
got lots of jobs done daughter did my hair but runny nose and dry rasping cough
13/03/2011 3.13am
nose running can't wipe phlegm stuck in throat can't cough heels sore neck aches
13/03/2011 8.29pm
stuffy and sore throat but well cared for and indulged:) daughter ill too :(
14/03/2011 3.17am
gagging can't cough nose running down my face eyes burning hips aching catheter and rig stomas weeping
14/03/2011 10.48pm
feel relaxed and glowing a day in the garden with carer finished with barbecue and an open fire
15/03/2011 3.35am
legs and shoulders tight and sore ankles and hips aching
15/03/2011 7.21pm
Went for a drive early on pretty much slept most of afternoon and evening still shattered
16/03/2011 1.07am
ankle agony foot turned over retching gagging dry cough
16/03/2011 10.08pm
relaxed evening so glad carer is no longer sick
17/03/2011 3.10am
difficult to catch breath limbs painful pressing down hot and dehydrated
17/03/2011 7.04pm
quiet day ready for daughter's drama performance tonight
18/03/2011 5.36am
can't cough nose and mouth dribbling back aches
18/03/2011 1.44pm
good carer cuprinoled my fences whilst I lazed in the garden and watched
19/03/2011 3.21am
ankles sore, legs, thighs, hips, shoulders and neck ache. dry rasping throat
19/03/2011 7.39am
lovely day at garden centre then planting very tired
20/03/2011 2.55am
cough slightly improved positional pain and cramps need to move legs badly
20/03/2011 10.02am
off to shopping complex for lunch with daughter it's raining so indoor day out! Clean fed watered happy
20/03/2011 4.33pm
had choking episode whilst drinking coffee with daughter more embarrassing than anything great day otherwise
20/03/2011 8.54pm
so tired my eyes feel like someone cling filmed them open. Tongue feels as though covered in popping space dust
21/03/2011 2.21am
back and neck crooked ow! Tongue fizzing with fasciculations
21/03/2011 5.12pm
pleasant day spent dozing and preparing meals long shower
22/03/2011 2.01am
did very little but was exhausted this evening. Desperately tired now but ache and can't move due on could cry
22/03/2011 11.19am
showered exercised shattered but well looked after
22/03/2011 8.16pm
very tired finally started my period tired all day stand in carer
23/03/2011 4.03am
too hot sweating and itching position pain tongue fizzing eyes stinging leg blister popped and oozing stuck to bedding
23/03/2011 4.21pm
pleasant day flowers starting to bud catheter really gunky but lovely carer giving plenty of fluids and keeping it clean
24/03/2011 2.03am
Severe sharp pain passing blood clots through catheter duration half an hour ebbing and flowing can't move
24/03/2011 4.25am
still passing drawing pin sized clots legs ankles etc hurt
24/03/2011 6.54pm
exhausted spent most of afternoon asleep. Stand in carer
25/03/2011 3.20am
shoulder and ankle ache difficult to catch my breath
25/03/2011 7.58pm
Shattered but in a good way after hydrotherapy
26/03/2011 3.11am
Bleeding heavily really uncomfortable ankles slipped very sore
26/03/2011 10.24am
clean at last coffee is lovely Friday carers doing overtime as regular sat carer sick and I cannot hack another stand in! :)
26/03/2011 10.14pm
slept a lot and between times managed to fit in a big family meal - bonus! Tongue fascics and general itchiness.
27/03/2011 3.27am
hips agony groin sore knees and shoulders ache position pain
27/03/2011 10.21am
forgot clock went forward still lolling about unwashed and undressed! Pain less now I'm in my chair
27/03/2011 9.46pm
cat poorly but I'm just tired
28/03/2011 4.03am
lying awake legs, hips shoulders bearing down on my bed pillow slipped neck ache feet slipped ankle hurts
28/03/2011 8.33 pm
relaxing day cooking with carer. Dozed a lot with recovering cat.
29/03/2011 4.56am
Joint and limb pain very tired can't move or sleep struggling to breathe deeply enough ankle slipped
29/03/2011 10.07pm
incredibly tired but regular carer is back from sickness leave and has looked after me well
30/03/2011 5.03am
extremely tired can't sleep stomach cramps and back pain need bowel movement
31/03/2011 9.25pm
Quiet day but still feeling very tired