Author: claimes1

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.

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.

I miss… my childhood days when the six weeks school summer holiday seemed to last forever.

Maybe it’s my nostalgic perspective but back then the seasons seemed so much more defined. Winter was much crisper and colder than today and the summer was long, hot and rarely a cloud was seen. As the years pass, the seasons appear to be shifting and even blending into one.

We Brits joke about the state of our summers. But all joking aside, when like me you live with a disability such as muscular dystrophy, you long for the Sun to make a prolonged appearance. So when the entire summer is a complete wash-out, my health and mood is negatively impacted.

I’m thankful… that the Sun is now a regular feature and the summer is fast approaching. Summer is by far my favourite season for many reasons.

Firstly, the warm, dry weather is hugely beneficial for my condition. Unlike the winter months, coughs and colds aren’t rife and so I need not be constantly on guard. Furthermore, since I am immobile and suffer from poor circulation, I struggle to regulate my body temperature. More often than not I feel cold, really cold. Therefore, as soon as the temperature begins to creep into the 20’s, (optimistic for the UK but I live in hope), I’m able to shed my well-worn woolly cardigans. It’s therapeutic simply to be able to venture out into the fresh air, to relax all day in the garden and expose my skin to the Sun.

Everyone seems so much happier throughout the long, hot days of summer. No miserable faces, no moaning about the crap British winter weather, no need to wrap up in several sweaty layers, no 4pm sunset!

I can only speak for myself but the sight of a clear blue sky and the summer Sun lifts my spirits and reinvigorates my mind and body. Roll on, roll on..!

By the way, I’m now on Twitter! Please follow me: @claimesuk