I miss… I’m thankful #16

I miss… my childhood bedroom, which was on the first floor of our family home. My room, next to my parents’, had the best view of the house, looking over a distant rural scene.

Since I couldn’t climb stairs, I accessed my old bedroom via a fairly cumbersome stairlift. Though it occupied the majority of the staircase and was considered (by some) an eyesore, I miss it somewhat. I would at times amuse myself by transporting the dog or cat up and down on the seat or footplate. Don’t panic, they enjoyed it – honestly!

Having lost the ability to weight-bear at the age of 10, it became increasingly difficult for me to access the upper floor of our home. So, in 2000, my parents made the decision to extend the ground floor and build a level-access bedroom and ensuite bathroom for me.

At the age of twelve, I left the security of my old bedroom for my new, street level room. It took a long time for me to grow accustomed to sleeping so far from the rest of my family. My parents and older brother slept in close proximity, safe upstairs, while I slept (or tried to) all alone on the lower floor.

My new bedroom is extended from the living-room, and consequently people seem to feel it is part of the shared family space. They often stroll in and out at their leisure, visitors included. This continues to be infuriating at times, though in all fairness it’s a small price to pay considering all that my parents have surrendered to accommodate me in their home.

I’m thankful… for the selflessness and sacrifices made by my parents for my benefit. I have previously mentioned the different ways in which my parents support and provide for me. In this case, the sacrifice was primarily financial.

As I was below the age of 18, it was my parents income that was assessed, meaning that they were afforded only a partial grant towards the build. To supplement the cost, they extended their mortgage. They didn’t have to do this. They did it for me. They did it to allow me greater independence and flexibility as my needs changed with the progression of my condition.

I’m now 28 and I still live with my parents in their home. Not ideal, no. We get on each others nerves from time to time. Disagreements are unavoidable. From this, it’s easy to want for more, and to wish I could move out and have my own space. The grass is always greener, perhaps. But it’s important to remind myself of all that I have and not what I don’t have. It’s important to remember all that my parents have done for me throughout my life. After all, not many would put themselves through years of debt in order to extend their home for the sake of their disabled daughter.

Walking vs Wheelchair: Accepting the Need for a Wheelchair

I was recently invited to write a guest post for the lovely SimplyEmma.

You can view my post for Emma here.

I’ve noticed a lot of discussion, within Facebook groups, around the topic of walking versus the use of a wheelchair.

Many disabled people gradually lose the ability to walk over a period of time. Often it occurs in stages: from independent mobility, to the need for walking sticks, then a frame and finally a wheelchair.

I appreciate that for the individuals affected, it is an incredibly difficult decision to make. Do I continue to walk for as long as possible, despite the struggle and restraints? Or, do I resign myself to the confines of a wheelchair?

I have noticed, from comments on social media, that this is how some view wheelchairs: objects of confinement and restriction.

On the contrary, I see my wheelchair as an essential mobility aid, removing the limitations I faced when walking for only short durations. The powered chair I now use offers me freedom and independence.

Obviously, your condition and individual circumstances determine whether or not you have the option to continue walking.

Personally, I never had a choice. I have Ullrich congenital muscular dystrophy and lost the ability to walk quite abruptly at the age of 10. Not that I could walk very well or very far up to that point.

Nevertheless, the choice was taken from me. I had reached a stage where I literally couldn’t support my own weight. Grit and determination played no part. And so, I went from walking minimal distances whilst wearing leg splints, to using a manual wheelchair that I couldn’t self propel due to a lack of strength and joint contractures. Sticks and frames were of no use to me whatsoever.

It was a difficult transition, of course. But not totally unexpected. As a child, I was offered little assurance of how my condition would progress. Doctors simply didn’t know. They couldn’t tell me if I would maintain my ability to walk or not. It was a case of, wait and see; roll with the punches. So that’s what I did.

To be honest, I was to a large extent relieved to be using a wheelchair, despite the fact I was dependant on others to manoeuvre me around. Even just a few small steps was a huge feat and physically laborious. That in itself was disabling me.

Committing to a wheelchair full time meant that I was free to roam with my peers. Kids at school used to squabble over whose turn it was to push me around. I was no longer exhausted, battling to stay on my feet or falling over and injuring myself. Being non-ambulant, I no longer had to wear those unsightly leg splints, which pleased me no end!

I had recently started middle school and, within a matter of a few weeks, I found myself completely unable to weight-bear.

However, less than twelve-months later, I was fortunate enough to benefit from my first powered wheelchair. I can’t emphasise enough how much of a difference this made to my life.

I could zip around at break times with friends, I could take myself wherever I wanted to go without the need for assistance, and I could venture into the local countryside. I was no longer confined!

It’s been eighteen years since I took my last footstep. And, I can honestly say I don’t miss walking. Naturally, I wish I could stand, walk and run ‘normally’. But I would never trade my wheelchair for my old leg splints, the bumps and bruises from falling so often, and the constant exertion to achieve a few small steps.

Not that I have a choice.

I miss… I’m thankful #15

A little lighter than last Friday’s post (and one for the girls!)…

I miss… being able to quickly, easily and efficiently shave my own legs.

I have Ullrich congenital muscular dystrophy. With that comes muscle degeneration, contractures and scoliosis. Over the years these have all progressed, thereby making everyday tasks increasingly difficult since mobility is restricted.

With regards to shaving, the main obstacle for me is the shortening of the tendons in my arms, resulting in severe contractures. I can now no longer extend my elbows beyond an approximate 80° angle.

So, after (briefly) considering an ‘au naturel’ look, I investigated alternative methods of hair removal.

Of course I could simply seek assistance with shaving. But I try my best to maintain as much independence as possible for as long as possible.

I’m thankful… I discovered the Razor Reach – an extendable addition to any non-electrical shaver. It’s simple to use, even for me, and can reach up to 18 inches.

Aimed primarily at pregnant women, the Razor Reach is not currently available in the UK though it can be purchased online.

If like me, you struggle to keep your legs silky smooth and fuzz free, I definitely recommend investing in a shaver extension device such as the Razor Reach.

I miss… I’m thankful #14

I currently have one part time PA who will soon be leaving to pursue a new career as a paramedic. So, for the past couple of weeks I have been occupied with the necessary task of finding replacement carers. Advertising, interviewing and responding to individuals has taken up most of my time. Therefore blogging was temporarily suspended and the usual Friday post, absent.

I’ve previously touched on the struggles associated with hiring care staff in my open letter to PA’s. As anyone in my position will know, this can be challenging, time consuming, frustrating and stressful. I never wanted the responsibility of being an employer, but unless I use agency care workers, I’m left with no choice.

So, on that note, it seems fitting that this Friday’s post touch on the subject of care:

I miss… the days long past when it was not a necessity for me to employ carers.

Until around ten years ago, my parents were my primary caregivers. Living with them in their home, as I still do, I was reliant on their support. Alas, parents get older and rightfully so, need more time for themselves.

So at the age of 18, I was awarded Direct Payments and officially became an employer to my first PA (an intimidating prospect). At first, she would attend just three mornings a week. Over time, as I got used to this change of routine, and my trust in someone outside our family unit grew, the hours increased to five mornings.

I have since employed several others, and experienced the hiring (thankfully not firing) process a few times over the past decade.

Entrusting my requirements to PA’s is now very much part of my life, yet it’s something I wish I didn’t have to do. I don’t necessarily choose to spend my time with those I employ, it’s simply a case of needs must.

Employing carers is synonymous with scheduling, routine, organisation and discipline. I, as an individual am not synonymous with scheduling, routine, organisation and discipline!

When becoming an employer, as I reluctantly have, you must adapt your lifestyle somewhat (or so I have found). You are responsible for your employees and are obliged to make yourself aware of the legislation involved, since you play a role just as your carers do.

My point here, is that I miss my pre-employer life. I wish I didn’t have to submit timesheets every month, calculate tax and national insurance contributions, ensure I have holiday and sick cover, treat my employees fairly by addressing their needs and concerns – and so on.

I wish I did not have to invite strangers into my home to help with my everyday challenges. I miss being able to stay up at night for as long as I like. I miss not having to plan my days and weeks; What time do I want to get up in the mornings? what time do I want to go to bed?

I’m thankful… that I applied for Direct Payments all those years ago and didn’t delay, since it is much more difficult nowadays.

Direct Payments (UK) is awarded by the local council following an assessment of your needs.

For me the process was fairly straight forward and swift. However, I am aware that for various reasons it is now more strict, time consuming, and arguably more stressful. I have no doubt that had I waited several years to apply, I would not be in the fortunate position I am now with regards to the hours of care I am afforded.

Direct Payments allows me to hire a PA of my choice, whilst also offering my parents a break from their care role.

So, all things considered, though I would rather not have to employ carers, I certainly could not manage without them.

A Positive Perspective on Disability

Here is my latest piece for Limitless Travel.

We, as a society, often consider disability to be disadvantageous. Many disabled people themselves hold this viewpoint. Of course, there are various challenges and downsides to living with a disability. But having lived with muscular dystrophy all my life, I have come to realise that there are also many positives.

It’s all too easy to succumb to self pity; adopting a pessimistic attitude towards your impairment and complaining about all the things it prevents you from doing.

I won’t deny, I fall victim to this school of thought from time to time. I’m only human after all. But at the end of the day, I’m stuck with me. There’s no cure for muscular dystrophy, and so there’s really no point in wasting valuable energy complaining about something I cannot control.

To counteract the common perception that to be disabled is to be disadvantaged, I have decided to list some of the ways my life has been enhanced by my condition.

  • Being able to skip to the front of the queue has brightened my day on many occasions.
  • Concessions: Many leisure facilities and tourist attractions offer some sort of concession for those with a disability.
  • In most cases, a carer can accompany you for free. If you don’t have a carer, take a friend instead!
  • Parking: I hold a blue badge which allows me to park in disabled bays, as well as on single and double yellow lines for up to 3 hours. The blue badge scheme is recognised by all European countries.
  • Thanks to the Motability scheme, I have a wheelchair accessible vehicle in which I travel as a passenger. Essentially a free car, all I have to fund is the fuel.
  • I can’t drive. Admittedly I wish I could, but the upside is that I have the freedom to drink when I’m out, as I’m never the designated driver. Being chauffeured around means I can relax and enjoy the journey rather than stress over traffic and navigation.
  • Shoes never wear out. Furthermore, if I don’t feel like wearing shoes, even to go out, I don’t have to since my feet never touch the ground.
  • I always have a comfy seat.
  • Kids are fascinated by my wheelchair with all its buttons and mechanisms. They love to sit on my lap or climb on the back and go for a ride. I’m always happy to oblige!
  • Being unable to weight bear, I never have to worry about falling over (a common problem for me as a child). Frosty weather and black ice is no concern.
  • Being faced by an oncoming electric wheelchair makes people instinctively move out of the way. Move or be mown down!
  • I can “accidentally” run into idiots and get away with it by blaming my wheelchair. Disclaimer: I accept no responsibility if you decide to follow my lead. But by all means, do!
  • Similarly, if someone is getting on my nerves I can ‘accidentally’ run over their foot.
  • It’s pretty frustrating finding yourself stranded on the top floor because the only lift has malfunctioned. But there’s always a silver lining: being carried downstairs by a strapping young man is a small price to pay for such an inconvenience.
  • Determination: I believe my perseverance (some would say stubbornness) is a result of living with my disability. I have, in many circumstances, had to fight harder, work harder and prove myself more than I would if I were able-bodied.

  • I’ve been introduced to many people through my disability.
  • My limitations force me to think outside the box. As a wheelchair-user, there are many struggles. In order to overcome these challenges, I have to think creatively. This may be through adaptive technology, home modifications or inventive DIY solutions.