Monday, 28 February 2011

GP Appointment

Rachael went for a blood test to check her full blood count (FBC) and to have a liver function test (LFT). The practice nurse found it very difficult to get blood but eventually felt she had enough to conduct tests. Another appointment made for 28/04/11 and Riluzole tests to be completed every 2 months thereafter. Rachael felt very drained after blood taking.

Tuesday, 22 February 2011

Catheter change at H Hospital

Rachael attended an appointment for a catheter change. Rachael's PA helped put Rachael in a sling and manoeuvred Rachael onto a hospital bed. Stuart changed Rachael's catheter and also washed out her bladder. Rachael asked if they had any spigots she could have and was given many. Rachael also discussed the smell of her urine with Stuart, who said to keep liquids slightly acidic to reduce bacteria growth in the bladder. Stuart recommended lemon barley water/cranberry juice/any citrus acids to try and reduce any smell. Rachael also mentioned blisters that were forming on her legs from the catheter tubing and two-way switch. Stuart recommended getting the smallest size tubigrip to put on tubing where necessary. Next appointment made for 05/04/11.

Wednesday, 2 February 2011

Salt-fire and flavoured jeans

I hope you get your dreams, just go ahead, let your hair down. 

Yeah, yeah, I now know it should be Sapphire and faded jeans but in the summer of 2006, it was hot, my daughter was just in double figures and I had just a bit of foot-drop to show for my dire prognosis. Corinne Bailey Rae was singing feel-good pop and we were determined to feel good, whatever the silly lyrics (I did appreciate the homage to Bob Marley). It was a summer for bare feet and cuddles, holding my daughter's hand and walking; I really miss walking. It was also the summer for big decisions, let-downs and loss of trust but who wants to ruin a perfectly good rumination with extraneous facts? (That sounds so pompous but it’s easier to plough through than to go back and edit on an eye gaze. I may have missed my calling but I'm a poor Leonard Sachs.) 
I can and often do, look at my life in seemingly conflicting lights. The truth, if such exists, lies somewhere between. I have been both extremely fortunate and incredibly unlucky. I have made ridiculously foolish decisions and have experienced a wealth of life's rich tapestry. Today is a good day and my memories are filled with joy and fun and mainly about my daughter. I have just been reviewing ‘a guide to MND for carers’, which reads, 'long term survivors have someone to love' that's got to be a hard burden to bear at the end. I know what it means though: if my life were not filled with such love, purpose and determination, I would not be here and because I have those things in shovels, here is a pretty good place. Here is also only possible because of the social and health care provision I receive. Without Social Care I couldn’t be the mum I am.
I seem inundated at the moment, with invitations and offers of help to write an advance health care directive. Sound advice but I have one, it says, "Do not kill me. Resuscitate me, whenever it is medically reasonable to do so. With good and sufficient care, my quality of life is fine." These unsolicited offers at every turn; GP s, Consultants, Therapists, Lawyers, Charities, Churches, Friends, Family and Random Strangers, all presuppose aggressively that I want to leave the instruction 'Do Not Resuscitate' That is not my wish at all. The sudden interest may reflect the stage of my condition, it may just be a coincidence or my sensitivity (pshaw) or it may be an altogether more sinister twist in the way we are guided to think. (Yes I am also sceptical of NLP! If that puts me one step away from a tin-foil bobble-hat: hey ho.)
To my 'Advance Do not Resuscitate' oppressors: 
The woods are lovely, dark and deep.
But I have Promises to keep,
and miles to go Before I Sleep.
By Robert Frost 
I keep thinking of a phrase my mum used a lot, 'O lungo drom', it's Romany for 'the long road'; I feel part resignation, part yearning, part home. Struggle is as it is and I might long for rest or respite but I wouldn't want it any other way. I will continue to fight with my last breath and then borrow some with a bi-pap. My Speech Therapist visited the other day and saw my end of life MND Association - Just In Case Kit. She has been on maternity leave and hasn't seen me for a while, so I was keen to get her opinion of my progression. I was delighted when she offered, 'I can't see you using that anytime soon, if anyone is going kicking and screaming it's you.' Given the obvious irony that I can already neither kick nor scream:  it made me grin.
When B was born, way back when, I wrote her a song, one of the few that I wrote that I have never performed publicly. One verse says; 
I will roar like a lion to defend you,
I will roar from the mountains that I love you,
I will roar with every passion in my body to your aid,
I will roar
My voice may be muffled and muted but I am still roaring. I roar against the cuts in education that jeopardise my daughter's future access to higher and further learning. I roar against cuts in housing, in employment, against the systematic destruction of the NHS and the Welfare State. I roar against the right-wing Atlantic Bridge brigade, creating 'The Land of the Fee and the Home of the Slave.'

Listening to Stephanie Says - Velvet Underground

Tuesday, 1 February 2011

February 2011. In which I celebrate my daughter's birthday and have some amazing Hydro.

01/02/2011 3.14am
Hips and heels sore. I seem to be lying on a crease. Knees aching.
01/02/2011 7.56pm
Had a really thorough shower and shave. Feel much better.
02/02/2011 2.49am
Neck really hurting.
02/02/2011 6.18pm
Neck definitely weaker. Speech unintelligible for longer periods and more frequently.
03/02/2011 3.14am
Night bag not draining. Groin sore. Limbs aching.
03/02/2011 7.56pm
Extremely tired after ROM exercises. Had a lovely day but neck quite sore.
04/02/2011 4.53am
Can't sleep. Everything aches.
04/02/2011 9.04pm
Attended hydro. First session in weeks. It was wonderful. In the pool- I walked! Afterwards I could lift my arms. Amazing!
05/02/2011 5.48am
Slept really well after Hydro. Aching more gentle. Could do with a knee bend. Breathing easier.
05/02/2011 10.55pm
Took it easy all day. Socialized this evening. Speech quite bad but body feels fine.
06/02/2011 4.26am
Neck and back feel quite tense. Knees and ankles sore. Difficult to catch breath.
06/02/2011 7.16pm
Apart from neck, speech and annoying people I've had a good day.
07/02/2011 5.00am
Shoulders and hips aching for hours. Legs heavy bearing down. Need to move.
07/02/2011 9.54pm
Constructive day thanks to carer making phone calls speech horrible slight urine infection
08/02/2011 3.49am
catheter not draining wee d thighs burning generally uncomfortable
08/02/2011 10.00am
clean dry exercised expecting visitors
08/02/2011 8.29pm
relaxed clean ROM exercises done sleepy
09/02/2011 1.20am
Cramps hard to catch my breath headache and back ache foot hurts and my catheter won't drain
09/02/2011 10.42pm
daughter's birthday, spent with sister and niece lovely evening
10/02/2011 4.33am
Shoulders heels and hips hurt, slight headache, pad is uncomfortable beneath me, catheter not draining well, sore groin
10/02/2011 8.08pm
clean ROM exercises done sleepy after a fun evening helping daughter prepare for DofE expedition
11/02/2011 3.56am
ridiculously hot can't catch breath headache and itching dehydrated legs sore
11/02/2011 7.52pm
Another amazing hydrotherapy session I can't express how much of a difference it makes
12/02/2011 1.30am
woke feeling hot and dehydrated fortunately someone still here to give RIG flush legs much better since hydrotherapy
12/02/2011 8.35am
still feeling the benefit of hydrotherapy speech noticeably worse this morning with fairly new carer breathing fine no headache
12/02/2011 9.37pm
just got in from a day at the garden centre-lovely but a tiring drive home
13/02/2011 6.55am
I awoke at 4am with agonising pain below my right shoulder blade. Horrible. Mended with a suppository but leaving me sore and exhausted
13/02/2011 11.20pm
napped all afternoon so full of beans now (not lit) - just as everyone is off to bed
14/02/2011 5.40am
following human error with my feed, the pump set off beeping at 2am I now have a headache and runny nose and sneezed my leg off the bed.
14/02/2011 7.23pm
Lovely day in the garden. Took daughter to dentist all fine. Tea with daughter and carer full of fun. Showered ready for film tonight.
15/02/2011 4.20am
catheter failed to drain a couple of hours ago. sore aching uncomfortable
15/02/2011 7.18pm
parents' evening was tiring but well worth the effort. I can't keep my eyes open now.
16/02/2011 5.30am
nodded off in my chair in the evening napping and dozing all night. Slight discomfort but not too bad.
16/02/2011 7.36pm
relaxed day made quiche for daughter's tea with carer. Lots of admin sorted voice practically useless all day breathing laboured
17/02/2011 3.57am
position hurts too hot sore throat headache dehydrated difficulty catching breath
17/02/2011 11.03pm
lovely day really long shower hair done feet massaged collected daughter from school took her out napped for a couple of hours
18/02/2011 4.47am
heels and calves, back and shoulder ache neck sore
18/02/2011 8.32pm
Really intensive hydrotherapy session glowing. Daughter's off to a party I'm just dozing.
19/02/2011 8.36am
breathing easier limbs loosened but neck and ankles ache. I have something in my eye making typing difficult
20/02/2011 2.03am
visited parents napped all the way home then watched a film til silly o clock
20/02/2011 5.37am
neck and hips really sore, slight runny nose but late night slept til 4
20/02/2011 11.08pm
Exhausting day updating computer files and being geeky. Dealt with teen drama. Lovely visit from pregnant sister  speech unintelligible
21/02/2011 1.02am
went to bed, carer left, did a pooh
21/02/2011 9.14pm
daughter has friend for sleepover. They are giggling. Carer and I are infected by their laughter  I am very tired
22/02/2011 4.30am
sneezing runny nose difficult to catch my breath headache and itching position pain
22/02/2011 6.15pm
Back from routine hospital catheter change feeling sore and pathetic. catheter cuffed, doctor tugged. blood and chunks
23/02/2011 4.07am
hot and dehydrated position pain ankles ache catheter throbbing and sticking to sheet pulls when I breathe
23/02/2011 11.01pm
very dodgy stomach all day touch of the runs started my period settled in time for excellent comedy show this eve
24/02/2011 5.06am
serious period pains cramps affecting every bit of me. Can't move
24/02/2011 5.16pm
Bed paracetamol period pains well ropey
25/02/2011 12.04am
Still in bed feel absolutely foul. Way too hot sore and stiff
25/02/2011 11.42pm
Excellent hydro session loose and light limbed. Friend popped in to do some tiling (slight w/ch crash!) and talk music tired and grinning
26/02/2011 3.39am
tired still relaxed from hydro but hips and back in wrong position too painful for sleep but it's been worse breathing laboured
26/02/2011 10.42pm
visited Bolton Aquarium tad disappointing but daughter managed her sealife assignment
shoulder and neck ache
27/02/2011 2.43am
foot slid twisted really hurts
27/02/2011 5.52am
nose running coughing frightening
27/02/2011 9.02pm
peaceful day good care snotty nose
28/02/2011 5.52am
aching for hours legs heavy runny nose earache need to move legs sitting on crease
28/02/2011 9.01am
about to have shower - good. Going to blood nurse not so much! Slight headache and difficulty catching breath sunny but chilly out
28/02/2011 5.44pm
Blood was difficult tiring and painful I have a headache. Slept most of the afternoon then nightmare finance issues to deal with.