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

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21 Comments

  1. steve evans said,

    March 15, 2012 at 12:14 pm

    great blog again. Don’t get too focused on FVC figures, mine has been well under 40 for over a year, having been 117 in 2007 and my bipap is still sitting unused in it’s bag. I will message you on facebook about continuing care, take care

  2. March 18, 2012 at 2:25 am

    Hi its Maria – hope you have caught up with me through facebook – Motor Neurone Together We Stand, the ‘Mrs’ has ( as you call her lol ). It is nearly 2am Sat 15th and I am sat in my lounge giggling to myself re the rolling off the table – sorry there I go again, just hilarious! x
    I am sharing you blog on my MND page as we really do need a bit of male injection to the conversations that run there – sure that is fine as we do need to broadcast ourselves and if we sufferers can’t promote each other then who can?
    So having read your latest blog I will back track to the beginning of this activity, you never know you may inspire me to blog (only done 2, find I need a quicker reaction or I am as you men say pissing in the wind ) fb gives me that almost instant feedback I as a needy woman with short life expectancy need! ps that is all said with my tongue firmly in my cheek! (not the life expectancy reality unfortunately) 😦
    Also like women I do tend to rabbit on, in person and via pc’s etc x apologies…. so off now to fb and tweet (MNDTWS, if you are tweet minded)
    Catch up with YOU via this and maybe get some sleep tonight?!?
    Well for now x get in touch as the ‘Mrs’ has be good to have your input – Maria xx

    • mndestroyer said,

      March 18, 2012 at 9:02 pm

      thanks Maria, would love to read your blogging so let me know when you post again. Will aim for a bit of male injection when I can…!! Look forward to more of your rabbiting, Adie xx

      • March 18, 2012 at 9:15 pm

        Don’t see the MP’s losing there pensions and job security bit of a bee in my bonnet re that at the mo !! x
        I really can not get in to blogging but like responding to yours Adie – please send lots and lots of thanks to Kiran for introducing us x we mnders must stick together x so keep blogging and I will keep facebooking at http://www.facebook.com/pages/Motor-Neurone-Together-We-Stand/186172661433282
        Think we have both found our neche so work together and we will raise the awareness of this horrendous and sometimes hilarious disease!
        Like the MS patient I was comparing wheelchairs with today who sudden HAD to go to the loo! My my the scrapes we never considered we would get in, but least we have bladder control! In every situation there is always an up side x Maria

  3. March 18, 2012 at 9:25 am

    Excellent blog. In this country you are better off spending your last penny on a luxury cruise than proving for yourself. Take Care.

    • mndestroyer said,

      March 18, 2012 at 9:06 pm

      thank you, it’s a sad state of affairs especially when I won’t see any of my state pension either !!

  4. Lou Baker said,

    March 21, 2012 at 10:12 am

    Hi Adie… You, are one amazing individual! you certainly have a gift with your writing, honest, incredibly descriptive, with huge amounts of humour injected. I felt guilty laughing out loud at times, because this is your life, and it is changing so rapidly for you on a daily basis. The A-Z was a very inspired idea, congrats to your gorgeous wife for coming up with that one. Kinda hits home the things we each take for granted every day.. in particular, A!!!!
    I can relate to the reflexology, I’ve had it now for 9 years.. it does make a difference, my feet are always thankful!! but the relaxation is incredible for the whole body 🙂
    Hoping to be in Lincoln this week, so will leave Kiran a message, it would be great to call in and see you all 🙂

    Lou x

    • mndestroyer said,

      March 21, 2012 at 4:09 pm

      Hi Lou,
      Lovely to read your kind words, it’s much appreciated. I’m really pleased that it is making you laugh, my main aim is the balance between facts on life and that there’s usually an up side. Was a great idea by Kiran, maybe the next one will have 10 goods things about MND!!.

      Hope you’re keeping well and look forward to catching up.

      Kind regards
      Adie xx

  5. Jas Bhavra said,

    March 22, 2012 at 10:02 pm

    Dear Adie, only you could write a blog with such clarity and honesty, and yet make it sound so entertaining that one forgets you are describing the challenges which only a handful people are facing, and people like us just take life and our health for granted. You and Kiran are absolute stars who are facing each day with great courage, even though each day can be quite heavy with physical and emotional setbacks. We do take our health for granted, reading your blog makes us appreciate what God has blessed us with. We are blessed to have you as our family member and pray you can enjoy days when you don’t feel too exhausted to sit back and relax. Luv you lots. xx

  6. Martin W said,

    March 23, 2012 at 8:42 pm

    Hi Adie.

    Although I know how things are and how difficult things are for you right now, I thought we had a really good catch up this week – it felt like our chats about anything and everything were the same as they ever were, which is good. Some chats about the serious side of things too, which I’m pleased we managed to discuss too.

    Now about that Excel spreadsheet…what on earth is a ‘pivot’ again??!

    Cheers mate,
    Mart.

    • mndestroyer said,

      March 25, 2012 at 7:11 pm

      Was great to catch up and speak ‘as was’ back in the work days. Makes me feel a bit more normal if you know what I mean. Lovely that you n G are doing the fund raising again, it’s really appreciated. Pivots allow you to switch / fine tune masses of data in one table and make much easier representations of periodic data… I love ’em, plus they’re easy to learn n use.
      Best wishes
      Adie

  7. Reena said,

    April 3, 2012 at 9:31 am

    Hi Adie,
    Your blogs as so very well written. I am loving the often humourous descriptions which make me feel like I am there when they happen. Kiran’s A-Z is inspired! if not only for you but also for us, helping us understand without you having to tell us each time we meet so as friends we are not like “rabbits in the headlight” and can just get on with it 🙂
    Hugs
    Reena xx

    • mndestroyer said,

      April 3, 2012 at 8:16 pm

      thanks Reena, you’ve hit the nail on the head with your understanding of one of the things I want it to achieve. Hope ur both good n are enjoying being 40 :-).
      Adie xx

  8. Lou said,

    April 8, 2012 at 5:25 am

    Dear Adie.
    I love popping in to read your blog. I love your honesty and your courage and how you capture all of that in such an amazing style of writing that offers both humour and clarity as well as giving me a huge sense of awareness of your journey with MND.
    I hope its OK but I have popped a link to your blog in my blog post today, I would so love it if a few people pop in on you from now on.
    Keeping you in our thoughts and prayers
    Hugs Lou xx

    • mndestroyer said,

      April 9, 2012 at 6:52 pm

      Thnx Lou for your kind & supportive words, quite happy also to spread the word on my blog by all means. I’ll have a read of yours when I get 5mins… moo takes all my time !!
      Take care
      Adie xx

  9. elenor12 said,

    April 8, 2012 at 8:58 am

    Wonderful blogpost and good that you can keep up a sense of humour thru times like this! Just wanted to stop by and say hi, got the blogaddress from Lou!
    Hugs, Elenor

    • mndestroyer said,

      April 9, 2012 at 7:02 pm

      Thx Elenor, hopefully the last thing to go will be my sense of humour !! 🙂
      Cheers
      Adie xx

  10. Shirley said,

    April 8, 2012 at 12:42 pm

    Great blog. Thank you for sharing your journey and the ABC’s are wonderfully informative.

    • mndestroyer said,

      April 9, 2012 at 7:05 pm

      Thnx Shirley, the ABC’s were a great idea by the mrs n have been good in helping people get a handle on what it takes!

      Cheers
      Adie xx

  11. Janet said,

    April 11, 2012 at 7:15 pm

    Hi Adie, you may not remember me, I was one of the ‘birdies on the boards’ or as a certain personnel officer named me Nurse Gladys.
    I was so sorry to hear of your health problems but having just read your blog you are clearly facing this with the same sort of humour I remember.
    Hope you dont mind my invading your space. For my self it has made me realise how lucky I am, and everytime I start to go into my ‘grumpy old woman’ routine I will think of you. Keep smiling, it always was a most attractive part of you.
    Take care, you have a lot of people thinking of you.
    Regards,
    ‘Nurse Gladys

    • mndestroyer said,

      April 17, 2012 at 9:44 am

      hi Janet, thank you for your kind words it’s really appreciated, I do remember all you lovely ladies and your happy smiling faces. I hope you’re keeping well and wanted to say thank you also for your kind donations to the raffle at work.
      Hope to see you all soon,
      Adie xx


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