The Blotting Technique

When you are living with a severe physical disability there are a lot of times when you just have to swallow your pride and get on with the task at hand, no matter how embarrassing it might be.

Such a situation like this arose for me quite recently. I use freeway ceiling track hoists for all of my transfers; wheelchair to bed, wheelchair to different wheelchair and wheelchair to toilet.  On this occasion, during my daily toilet excursion, having finished my business and wanting to transfer back into my wheelchair, the hoist decided to stop working.  This left me swinging, midair, helpless and half naked! Thankfully I avoided the intervention of Reading’s finest firemen due to the ingenuity, resourcefulness and persistence of my mother and sister!

Believe me, I have plenty of other examples such as a cystoscopy (if you’ve ever had one, you’ll know what I mean!!), all the times I go topless for the male doctors to give me a heart scan and, one of my personal faves, the time when I was on a hospital ward and the nurses ‘accidentally’ pushed me half naked outside of my curtained area.

I am able to look back on all these occasions without fear and maybe even with amusement!  All of these incidences are times where you just have to 'blot' the embarrassment out of your mind, ignore the fact that you feel incredibly useless and undignified and focus on the task at hand.  The chances are that those who are helping you, be it family, nurses, doctors, friends or indeed firemen, will just want to help no matter what the situation.

I like to refer to this as my blotting technique.  Blotting can be defined as to make obscure; hide, (blotting definition) and when applied it can be used to effectively ‘forget’ the embarrassing feature of a situation and soldier on regardless.  What choice is there but to 'just get on with it'?

As a side note, my hoist is fixed now and I avidly await, with stiff upper lip, the next time I shall use my blotting technique.

Drugs!

Medication:  All my use of drugs!

When I use the word ‘drugs’ I of course mean the doctor prescribed, pharmacy, kind and not the shady street corner deal kind!!

I, very literally, could not live without my medication.  If civilisation as we know it ended then I would be gone as soon as the medication ran out!

So what is it all for?  Well, I can’t remember if I have mentioned this before, but there is no cure and no treatment for my condition, Friedreichs Ataxia (though some FAers take vitamin E and Co Enzyme Q10 and have reported a slowing of the progression of the condition*).

So my ‘drugs’ are all for the control and alleviation of the plethora of symptoms that come along with the ‘natural’ decline of an individual with Friedreichs Ataxia.  From Insulin injections for diabetes type 1 to bladder spasm medication, I take a total of 8 tablets per day and have three injections and four finger-prick blood tests.  And I count myself lucky.  I am a firm believer in the phrase ‘there is always someone worse off then you’.  My mum has used this phrase ever since I was little and yet again…she was right!

Living with and having to rely on medication in order to just function halfway ‘normally’ is not fun.  Dealing with Doctors Surgery Receptionists and Pharmacies just to get a prescription can be trying enough without the mention of unwanted side effects!!

* Friedreich's Ataxia

Friedrich's ataxia is a hereditary disease that affects the nervous system as well as the heart. It causes coordination problems and muscle weakness. There is no cure for Friedreich's ataxia, or FA. But clinical trials have shown that CoQ10 in combination with vitamin E can mitigate the symptoms of FA by increasing the energy production of muscle and heart tissue, reports the Muscular Dystrophy Association. A synthetic version of CoQ10 has shown promise in reducing enlarged hearts in FA patients. The FDA has not yet approved the use of CoQ10 or vitamin E for ataxia ailments, however, so medical insurance doesn't cover this treatment.
From http://www.livestrong.com/article/272962-what-are-the-benefits-of-coq10-combined-with-vitamin-e/  2013

Cars, Driving and Motability

My Mum once said to me that driving was one of my biggest achievements.  At the time I can remember feeling disappointed that she didn’t rate all the hard work I had put in to get my degree in Health Sciences, though thinking about it, I can see she is right.

Driving for me requires a lot of mental and physical concentration.  So much so that I only drive places within 45 minutes of my house. That doesn’t sound far but this alone affords me so much more independence and opportunity from socialising with friends to shopping at Tescos!

 I started my first full-time working position in 2001 moving down to part-time in 2003.  Every day I would rely on taxis to take me to and from work and although I enjoyed the company of my taxi drivers who were both very nice, I became taken with the idea that I could be yet even more independent.  So in 2006 I applied to Motability to help me get an adapted car.

When applying for a Motability vehicle, it is standard practice to go to a car dealership, who offers Motability, and they will fill out the required forms etc.  However, because the vehicle I require is very heavily adapted I could not do this.  I had to apply to Motability directly.

The first the car that I had from Motability was a Renault Kangoo.  It had ramped access at the back which allowed me to drive into the back of the vehicle in my powerchair and straight into the driver’s position with out getting out of my wheelchair.  My wheelchair is then automatically locked into position and other car controls can be operated by hand.  I therefore have to do with two hands what most able-bodied people do with all four limbs!  I learnt to drive in my Renault Kangoo, and passed my test first time after about six months of lessons.  I loved my Renault Kangoo however, it did frequently let me down and the adaptations sometimes (regularly!) were not very reliable.

After five years my Motability contract ran out and I was faced with a choice.  Either I could extend my lease of my Renault Kangoo or apply to Motability for a new vehicle.  Because of all the problems I had had with the Renault Kangoo have and because it was showing signs of wear and tear, I decided to apply for a new vehicle.  Luckily Motability said yes!  I was even more pleased when they said yes to the car that I had been eyeing up on the Internet, the Citroen Berlingo duo. Berlingo duo link

My Berlingo has the same adaptations that my Renault Kangoo although I would say that there are significant improvements.  For example the floor of the Renault Kangoo was very steep to get my powerchair into and if it was wet outside my wheels would slip.  My Berlingo has largely flat access.  My Renault Kangoo would allow for an able-bodied person to drive it and for me to be clamped into the rear of the vehicle however, my Berlingo easily allows for an able-bodied person to drive it and for me to be clamped in as a front passenger, which is the much better position to be in.

Being a driver means not only that I can go to the cinema with friends and visit them in their houses, but to me it means that I can go to Tesco’s and do a shop with my mum, take my sister’s dog to the vet, pick my younger sister up from work, drop my older sister at her boyfriend’s house… etc etc etc…

It makes me feel like a valuable member of the family.  It will be a sad day for me when I can no longer drive. 

Daily life...

A routine is not necessarily a bad thing!

A blog entry inspired by an email to my friend Ursula Grenter.

Never underestimate the positive power of a good rut. Because, yes, there is such a thing!

So what is a rut?  The dictionary (Free dictionary link) defines it as ‘a fixed and usually boring, routine’

Well I am in a rut.  It is comfortable.  And I am not bored!

I don’t see my little, mundane days as a negative thing.  I mean, sure, I look forward to the days where I go out with friends or family to the theatre or cinema or my day out to go to Harry Potter Studio Tour (fab. Harry Potter Tour link), or Whipsnade Zoo (great. Zoo link).

However this blog is about all the in-between days where nothing special happens, care routines fall into a familiar pattern and life seems to slow down.

I treasure these days.  Days where I am not expected to do anything and can choose whether to play Simpsons: tapped out (username: emmabuckett), read my book or do my cross stitch.

Don’t get me wrong, to have a purpose and responsibility is a really good thing and is what keeps the world turning but it is really important to also have days to just rest, do whatever takes your fancy and take time to think about things.  Take stock if you will.

By nature I am not happy being ‘purposeless’ but due to the debilitating, degenerative disability that I have, I have been forced to give up my regular office job with little to no prospect of being able to hold down another.  I can no longer type for long periods of time, I can’t carry anything heavy, I can’t file, I can’t reach a photocopier, my speech is slow so I can’t speak to people on the phone a lot and the list goes on…  Whilst I remain hopeful that something might one day come my way, I have absolutely no idea where to look, what this might be or how on earth I would be able to regularly hold down a job.  I am sure it is not just me in this particular predicament.

So how do I cope on a daily basis?  The answer is fairly simple although it did take me two years to figure it out after finishing work!  Take each day as it comes.  Don’t be afraid of changing your routine and don’t be worried if it turns out that you don’t have anything in particular to do that today.  Relax.  Perhaps use your time to pursue your hobbies, catch up on your correspondence, take up a hobby that you have never tried before, read all those classic novels that you have been meaning to read for years but never gotten around to.

It is your life and even if there are negative issues that you can’t control, don’t let it stress you out.  You can deal with it!