Email received from Speech Therapist

Lynsey emailed saying she has written to MND Specialist Nurse at H Hospital, who advised Rachael to bring Just in Case kit to clinic on 11/05/11.

GP Appointment

Dr. O failed to collect a sample of blood for Riluzole testing. Further appointment made with practice nurse.

Respiratory Appointment at Wy Hospital

Debbie provided Bipap respiratory machine for use at home. She set the machine up, went through instructions for use and emergency procedures.

Email received from Dietician

Claire passed on her successor's contact details.

Spring Conference, Manchester and all that Jazz

Organising two things in one day is never a good idea for me! Repeat ad nauseam or at least until I get it into my thick skull! 

The plan was; up at six, forgo shower, get dressed and take tablets, off to Manchester airport. There's always a but...  this time it was going oh so well until my daughter timed a joke to coincide with a spoonful of medicine taken orally for speed! Cue Senna down the carefully chosen blouse. 

It was a gorgeous day, strawberries were blooming in my garden and I could almost taste the summer jam. I didn't know if they would take planted in the knot holes and between the planks that make up my garden walls and raised beds. My garden is really getting to that exciting time of year. I am so grateful to Peter who said he could ramp it, when everyone else thought it impossible. 

It was with a glad heart and suspension in my chair, tyres pumped and battery full that I set of to the MNDA Regional Conference. 

In the foyer, waiting for my brother to register, I bumped into an old friend, Rob with his son. Thom has been out for years and lives with his boyfriend in London, I have heard all about him since Rob and I met in 2005 but had never seen him in person before.  Rob launched into a completely uncharacteristic tirade of abuse and homophobic hate language. He wrapped it up with much back slapping jollity and smiles but Thom was uncomfortable and I was embarrassed and I felt increasingly offended. How many times can 'mincing queer/puffter' or 'screaming lezza/dyke' be considered funny in one sentence? I don't consider myself particularly sensitive but the whole 'some of my best friends are gay' speech just annoyed me. The encounter reminded me of when I worked at Faversham EKP. Urgh, just urgh. If I hadn't been madly besotted with Andrea, that place could've put me off women for life. 

Not all the workers there were violent thugs but the language and culture had the dual effect of allowing the three women who beat me for being, 'funny', to feel justified, that they were doing the will of the majority and also of silencing me from any complaint, as I also felt that I had no safe recourse. I must point out that I haven't been to Faversham since 1988. I hope my experience is no longer reflective of the town.  

I have been reading Johann Hari http://ind.pn/fihjiL  I agree strongly. 

Back at the conference, Sam returned with our name tags. Mine located me from Rochdale: I don't live there! The tags were on those sturdy necklaces that were briefly in vogue in the civil service until they were identified as a strangulation risk and had to be redesigned. 

In the conference itself, I am ashamed to say, after 2 changes of clothing, a 30-odd mile car trip and a stressful conversation, I fell asleep, I awoke briefly to hear the association welfare advisors demonstrate a lack of welfare knowledge and the resulting waste of donated money. What really irked was that it was my field of expertise and I so badly miss usefully employing that knowledge. I have insufficient strength to begin to explain the ramifications of government housing policy changes but am frustrated when my representative gets it wrong. More accurate perhaps to say dismisses the question. 

Lunch consisted for us, of two cold potatoes. Not a good vegetarian selection! I did, however get to use my RIG in public.  Oh hush now; I rarely get the opportunity to indulge my inner drama queen. P. A. S are so easily embarrassed, whereas my brother loves an audience as much as the next man, if the next man is Brian Blessed’s show-off cousin.

After an inordinate queue for the disabled loo it was back to the conference hall. Compared to last year's zebra fish, the research slides were rubbish! They were sloppily laid out and incoherent. That said the actual content of the talk and the speaker's delivery was fascinating. It's encouraging to learn how my blood samples can help the development of biomarkers in the lab in Sheffield. It gave me a comforting sense of place. Knowing where my blood is and what it is doing and how it could help makes everything seem a little less futile. 

The association volunteer from my local branch is, in all probability, a wonderful woman, I just object in principal to anybody knowing my details without my consent. We got off on the wrong foot at clinic some years ago when she approached me with, “You must be Rachael, how’s your peg?” It went from bad to worse and when she crept up behind me in the conference hall and spoke to my brother over my head, I had to pretend to be asleep to keep the rage at bay. Why is it not obvious that standing behind the chair is rude and frustrating to the occupant? Speaking to my brother afterward, I accept that a momentary lack of thought doesn’t make her evil but I still maintain that basic wheelchair etiquette should be common sense but clearly isn’t.  

At hydro last week, the poolside attendant kindly offered to help me dress. Her only task was to remove a towel and replace it with a sarong whilst my PA held me in the air. It was all fine and dandy, I was launched semi-clad, dangling above the cushion, when suddenly... Surprise towel grope between my legs! I have no doubt that the woman had no motive other than to ensure that I was fully dry, but in that split second, that was not how it felt! Regardless of whether I needed additional drying, wheelchair etiquette dictates and indeed common decency demands that some forewarning, recognition or invitation  is required before shoving your hand, towelled or not, about my genitalia.  

We returned home and for 20 glorious minutes, I slept in front of the Grand National results as my brother and PA turned the front room into an impromptu meeting of Gambler’s Anonymous!

I was rudely awakened by an annoying alarm on my mobile phone prompting me to the second part of my day. Why did I do that? I am clearly stupid or a masochist or both! We set off to Hollingworth Lake to meet other contingents of my family. There was a reason for my ridiculous diary cramming. When I booked the conference, my mother was adamant that she wanted a no-fuss birthday. I respected that. Four days ago, my uncle arranged a lavish meal for the entire clan. There would be relatives flying in from Hong Kong, Japan and of course, my brother and his family from Scotland. My sister has just had a baby. He would be there. The emotional blackmail was intense.  Despite Mum not wanting it, I would be letting the whole family down if I did not at least make the effort!

My brother and uncle and two of my PA’s had rung ahead to check disabled access to the restaurant, I confess, partially in an attempt to find a get-out clause, on my part. We had attempted a dummy run 2 days earlier. We were assured that access was available, although staff were suspiciously unwilling to allow me to try out the side-door or ramps. My PA went in to look and came back shaking her head saying, “They are really quite steep”.  I arrived on the day to find the side-door locked and blocked and was presented with two flimsy sticks to use as ramps. Luckily, my Scottish brother is a stocky chap, built like a rugby player, which is fortunate because he is a rugby player! I had one brother on the bottom of the ramp as anchor, another brother behind the chair, shoving, (the gradient was too steep for the Spectra Plus) an uncle at the top for ballast and two brothers, one out-law, one in-law, on either side just to be sure. My PA felt quite redundant!

I may have mentioned that I was quite tired by this point! Too tired for my eyes to function with a Mytobii. 

My PA and I communicate all the time. We have developed codes and shortcuts so familiar that we no longer even notice that we have slipped into an exchange of grunts and nods. My family are less regular visitors and I was sad to realise that with the exception of Dan and Sam, my speech was entirely incomprehensible to them all. No longer redundant, my PA spent the meal as chief translator. The food was wasted on me, eating is difficult at the best of times, that’s why I have the rig! It looked lovely and sounded terribly impressive in Italian on the menu. The restaurant was not my cup of tea.  When we first sat at the table and looked around, my PA whispered, “there’s no recession on in here, is there?” The place was dripping with ostentatious wealth, the air choking with '80’s style obsolescence. The militant in me wanted to leap onto a table crying, “No pasaran!” form barricades and start the revolution. The wimp in me muttered into my napkin and smiled for the camera.

Mum came over and via our interpreter, started to thank me for helping a family friend. Kathy was 67 years old and had been deported from Pakistan after the death of her husband. She had returned to Oldham, homeless and presented at the one-stop shop. She was referred to a night shelter in Salford but when she arrived, they could not find her a bed, dealing only with homeless men! She stayed the night with my mum and contacted me the next day. The only advice that I gave her was to return to Oldham and explain clearly what had happened. I gave her some quotes from guidelines and legislation. She is now adequately housed. Apparently, nobody had noticed that she is a pensioner with a local connection to Oldham and in quite frail health despite looking spritely for 67. I suspect that my advice had very little to do with it. It is worrying that different officers can have such a profound effect by their decisions on the lives of the most vulnerable people. Mum and I can have the most amazing conversations about other people but fail to communicate about our own lives. She is a truly fantastic woman in so many respects and I admire her incredibly, I wish I knew her better.

I gave in and slept through the second and third courses of the meal. I am told that I didn’t snore, that would be a first! I woke up for pudding and birthday cake replete with full harmonised singing. My family does enjoy a good sing song. I believe that “happy birthday” has always lacked the monotone urrr that I provided.

After two J2O’s and a ridiculously small coffee, I found the disabled toilets completely inaccessible to my beast of a chair. Thanks to Dr. G and a pot of geraniums, that did not bother me. Leg bag emptied, I returned to the table. As I passed the ladies’ loo, all of my sisters, for I have many, traipsed out. I have never danced around a handbag and I have never understood a platonic need to go to the toilet in packs. I have never answered the age-old question, “How do they all fit in one cubicle?”

Many years ago, shattered, drunk and in a post-gig haze, I returned home craving a pickle sandwich. Knocking the breadbin over, I retrieved two slices from the floor. I had eaten half of my supper before noticing the tub of spread on the work surface full of hot chocolate powder. I have not been so wasted since, until this evening. I slept in the car and dreamt of cocoa butties.

Emails exchanged with Speech Therapist

Lynsey enquired about the eTran frame, Just in Case kit, carer training and Tobii error message.


"eTran frame: we are still getting used to it - it's a bit of a game at the minute! It has proved useful a couple of times and hopefully we will all be familiar with it before a crisis needs to be averted. We are hoping to put together a list of basic questions for my care staff to run through. Do you have any examples/templates?
Just in Case kit: The physio I have seen on occasion is Kathryn, but I haven't seen her for some time. I certainly haven't had any advice or instruction regarding the use of this kit.
Carer training: My funding is not inclusive of a training budget.
Tobii error message: I was told to leave this with Smartbox many, many months ago! I will contact them again." - Rachael

Visit from Dietician

Claire asked about crystals in urine. Rachael said she was much improved since flushing fruit juices through her rig. Claire asked about bowel movements. Rachael confirmed the use of suppositories and their effectiveness at the minute. Rachael said she takes plenty of fluid throughout the day and said she had no problems with the overnight feed. Claire asked if Rachael was still taking antibiotics for urine infection. Rachael said not at the moment but stressed is still prone to infection.Claire then introduced Aisling, new dietician. Claire said she had a new job in Leeds but will be available until the end of April 2011. Claire gave number for dieticians office.

Catheter change at TG Hospital

Rachael attended a catheter change appointment. Stuart really struggled with the removal of catheter tubing as it had 'cuffed'. Stuart had to use a lot of force to remove tubing which cause Rachael discomfort and bleeding. He then washed out Rachael's bladder and said Rachael may bleed for a day or two due to 'cuffing' and arranged another appointment for 24/05/11.

April 2011. In which I am very tired and need plenty of relaxation.

01/04/2011 8.55pm

Tired due to a busy day

02/04/2011 7.22pm

Relaxing, quiet day

03/04/2011 7.58pm

Luxury. Yet another relaxing day. Beginning to feel tired now though.

04/04/2011 7.46pm

Busy day. Really tired now. Bad nights sleep last night due to soreness from pressure points.

05/04/2011 8.14pm

Exhausted. Catheter changed in hospital. really taken it out of me.

06/04/2011 6.02pm

Yesterday left me tired out. Relaxing day today but still feel exhausted.

07/04/2011 8.43pm

Busy day again. Tired out. Last night had bad cramps so slept poorly.

08/04/2011 6.42pm

Had Hydro today which was fantastic, but am so tired now.

09/04/2011 8.09pm

MND Conference today and my Mum's Birthday bash. Both great but I'm absolutely exhausted now.

10/04/2011 5.35pm

Had a lot of soreness through the night. Not positioned correctly.

11/04/2011 12.52pm

Relaxing day with a visit from family. Really enjoyed that.

12/04/2011 10.37am

Family were here again. Rest of the day is for relaxation.

13th 6.20pm

Went to a BBQ which was good but I'm feeling really tired now.

14/04/2011 4.05am

Really painful cramps through the night. I feel really tired now.

15/04/2011 11.17am

Relaxing day but I'm still trying to catch up on the missed sleep from yesterday.

16/04/2011 8.04pm

Relaxing day spent with carer. I'm now feeling very tired.

17/04/2011 6.18pm

Had another quiet day with my carer. Spent some time planning the planting of the last few spots in the garden.

18/04/2011 7.11pm

Had a fairly quiet day but am now exhausted

19/04/2011 5.33am

Really painful cramps and soreness from pressure on my back throughout the night.

20/04/2011 7.18pm

Quiet relaxing day. Needed after yesterday.

21/04/2011 7.17pm

Relaxing day but I'm feeling tired now.

22/04/2011 5.15pm

Had a nice quiet day.

23/04/2011 6.39pm

Spent the day planting in the garden, and having fun.

24/04/2011 5.06pm

I've got really bad cramps in my ankles. Bad nights sleep.

25/04/2011 7.25pm

Quiet day but now I'm really tired.

26/04/2011 7.10pm

Had a lot of carers on today to cover holidays. It's really taken it out of me and am now  tired out.

27/04/2011 7.17pm

I'm really tired now despite a relaxing day.

28/04/2011 7.42pm

Had a visit to the doc's this morning and am now extremely tired. Bad night last night with cramps and lack of sleep.

29/04/2011 8.01pm

Relaxed all day. Just what I needed.

30/04/2011 7.21pm

Had loads of fun at a local festival until it got too cold. When I got home I realised how tiring the day has been.