The alphabet game

well, it’s been a couple of weeks since my last foray into the literary world, my intention was that my blog would always be a positive thing and had I blogged last week I feel I would’ve be hard pushed not to sound like a right moaning git!

There has been the full gamut of emotions recently, however days would get tedious without the undulations of life to keep us on our toes… Metaphorically speaking that is!

At my bimonthly visits to Sheffield to see the consultant one of the things that they check is your lung capacity. On my first one over a year ago, I was 105% for my height and age, it was quite shocking last week when the best I could achieve was 63%. Though I have noticed getting a bit short of breath when I exert myself I was not prepared for such a low percentage, this is quite a sobering thing to see in the black-and-white of a printout and takes some getting your head around. We are now entering the point where we are having those conversations about breathing assistance, there are various things that can be done and the least intrusive would be a breathing mask and machine whilst I’m asleep in order to ensure that my body can get rid of the CO2 that builds up by not breathing very well. I can’t imagine the Mrs getting much sleep having Darth Vader laid next to her, but then again maybe she could twist her hair like Princess Leia… :-), Lads, you know what I mean ;-).

I have always been quite ambivalent with regards blue badges and disabled parking, if they’re parking there then I always presumed they needed it and didn’t really pay much heed. However, since all journeys now involve the use of wheelchair you realise how many people take these spaces and merrily jump out of their cars with great alacrity and  trot off without a care in the world. I fully understand that some people have other nonvisible issues that dictate their need for this assistance, but I would sadly wager that a high proportion are over egging the pudding a bit in order to get to park a bit closer to Tesco’s. What is really perturbing about this is that having high rate mobility assistance is usually the avenue to getting a blue badge and if these people are getting that then there’s no wonder the government can’t afford the benefits bill!. I won’t delve any deeper into this one today as it could quite easily become a rant…

My sessions with the energy healer have now run their course, and I was certainly pleased that I gave this a go. The next thing for me now is the old reflexology, this time it was my feet that got the treatment and I can honestly say that it was quite nice and I felt a bit better afterwards. Once you get past the image of a burly bloke rubbing your feet using moisturiser then it becomes enjoyable! It is good that I was able to stay in my chair whilst doing this as at one session with with the energy healer he plonked me on the massage table and turned around to only to find when he turned back I had tilted backwards and fallen off the other side.

It was really nice at the weekend to have a reunion with a load of lads with whom I used to play cricket, it had been nigh on 10 years since we last got together and so it is a shame it took something like this to bring it all together again. It is amazing how you just slip back into the groove like it was yesterday and how great memories come flooding back. Everyone was really cool and just got on with pushing around the chair when we went for a fag. This kind of evening is great and just a few hours you feel relatively normal. As life pushes on you tend to lose touch with people and I have found that I wanted to catch up with people I haven’t spoken to in years. The dilemma comes in that the first question on the phone is how you doing, and what do you say? ” oh good thank you, terminally ill but wanted to say hi before I die”. It is a very difficult way to get the conversation started and probably not the best way for people to find out but what choice do you have sometimes. You need to tell them but it’s not something that really comes up in the natural course of a conversation and is it really fair to drop something on them like that out of the blue.

The Mrs suggested that I should do an A-Z of things that I miss as things progress and as you start working through it you realise it is really simple and basic things that you do without thinking that you miss the most:

A – Arse-wiping

B – Bicycle, bath, BMW, boys nights out, big deep breaths

C – CFor youycling, clothes by choice not necessity, cutting up food, cooking, cinema (premier seats)

D – Drinking from a cup, driving, dressing,/drying self, DIY

E – Eating

F – Fishing, seeing fish grow as hard to get outside, Feeding self,

G – Getting in and out of the car, Gym, gardening

H – Helping / playing with daughter with physical things, holding a pen, hugging wife and daughter

I – Injuring myself knowing I’ll recover

J – Jumping

K – Kickboxing

L – Lifting and picking up things,

M – Muay thai

N – Nose picking !

O – Outdoors

P – Pants, putting socks and shoes on, park with daughter, finishing pond build

Q – Quilt – lifting duvet in bed

R – Rolling fags, rolling over in bed

S – Sitting on settee, shaving, shoulders with daughter, showers, swimming, stretching

T – Training, tinkering with cars

U – Utching (blokes will know what this is)

V – VW golf, veggie patch

W – weeing by self, washing self, walking

X –

Y –

Z – sleeping comfortably

I have finally accepted that if the Mrs is to continue working, (which I feel she should do so much that she gets a break and maintains her skills and social contacts), then we need to consider getting people in to care whilst she’s out. I have worked all my life and have made reasonable provision in order that my family will be provided for. Unfortunately, because of this I do not get any help via the council from whom these services are normally provided, if you want help then pay for it yourself. Basically, if you have never worked and paid into the system then you get everything for free, for example wet rooms, alterations to the property to make it disabled friendly, carers et al. Don’t get me wrong, those who have worked and get  help I do not begrudge them in the slightest, but it is a major kick in the teeth that those who haven’t paid into the system get the most out of. We looked at the possibility of continuing health care via the NHS but according to their questionnaire I don’t qualify as I’m not disabled enough????, I’m not sure how bad you have to get realistically in order to get help out of the system, it is an absolute nightmare.

Anyway, enough of my moaning today and finish with what I thought was a great piece of wit, apparently this wasn’t shared by the Mrs. We were in the cheese section of Tesco’s….:

daughter   -“daddy, I want a laughing cow” (cheese triangles)

me      – “well, tell your mother a joke”

TT FN