Adventures of Pom

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, t...

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. ...

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 ...

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: emmabuck...

Sometimes it is the little things that get you through the day. As I get older, my condition declines and I often have days where I wake up tired, my muscles don’t want to work and getting through the day is a fight.   Living off of sheer will-power…! It is on these ‘will-power’ days that the little details are so important and one such detail for me is my Google Calendar. The tiredness has definitely increased since I’ve finished work and it is difficult to distinguish between feeling tired and lack of motivation.   Is the reason I find it harder to get up in the morning because I really feel tired or is it just because I know that I do not have to go to work?   No longer working, I can honestly say that I am never bored.   There is always something for me to do, be it cross stitch or reading or visiting with friends, going to the cinema, watching Syfy or spending time with my family.   However my Google calendar has become a very important par...

At the moment I am happy with the Care Agency I have.   Which is actually quite a big deal.   Having to have physical assistance with even the smallest task is not a very dignifying process and so having the right person/personal assistant/carer, or whatever you want to call them, can make all the difference. I hate having to have care, hate it hate it hate it...!  Its undignified and embarrassing.  However if you've got to lump it whether you like it or not, it might as well be good care... I have a lot of physical assistance with getting in and out of bed, dressing, showering, food preparation and other general day to day tasks – picking up things, reaching, feeding/cleaning my tortoises etc… In short without the assistance of others I could not survive but although that sounds like a depressing thought, it is not.   Having care is hard but it is something that you can learn to get on and deal with and live a productive life. I have had care thr...

There are no two ways about it.   Having a disability sucks.   No matter what form your disability takes, there will always be some way in which you are disadvantaged. HOWEVER There are some grants and concessions that you can apply for that are very cool and will go some way to easing your burden! Here are a few that I have taken full advantage of: (please check relevant eligibility criteria before you apply) Ø      Cinema Passes – carer/Personal Assistant (PA) goes free - with the high price of the ticket to the cinema these days, if you have to have someone with you it is even more costly and so be sure to apply for a Cinema Exhibitors Association ( CEA ) Card at  CEAcard Link Ø      Bus passes - my local council offers a free bus pass to wheelchair users and those with physical disabilities.   You can also have your pass endorsed so that a PA, if needed, can go free as well.   It is definitel...