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.

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.

I miss… I’m thankful #13

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

I miss… I’m thankful #12

I miss… blissfully and carelessly playing on my garden swing as a child.

Every kid loves playing in the park and daring to see how high they can reach on the swings. I was no different. The only thing that was different was my garden swing. I had a blue ‘bucket’ style, full support swing much like the one in the picture, (although I never wore the straps – what a rebel!), and I absolutely loved it.

After school, weekends and school holidays I would beg anyone and everyone to push me as high as they could for as long as they would indulge me. I loved the sense of freedom and almost weightlessness, the rush of fresh air, my legs swaying as furiously as they’d allow.

Back then I had only a manual wheelchair which I couldn’t propel myself and so I felt confined, frustrated and idle. I desperately wanted to be able to run around frantically with my friends, to experience that exhilaration and energy.

For as long as I could and when opportune, I loved to ride roller coasters since it was one way for me to feel that same thrill. But, the sad fact is roller coasters are simply not designed for those with any kind of physical disability. Before long it became impractical and too difficult to manually lift me on and off of the rides.

That is why I held on to my beloved blue swing for as long as possible. Thankfully I never grew too much! Although somewhat cocooned in the seat, I never felt restricted, only safe and secure thereby enabling me to swing to crazy heights if so inclined.

For anyone out there who has kids with a disability, I whole heartedly recommend investing in one of these full support swings. They now come in a range of sizes, even accommodating adults. It may seem a simple pleasure but honestly, for someone with limited mobility, the sense of being lifted from the ground and into the air at speed is invaluable.

I’m thankful… that I started blogging and am therefore able to share my knowledge and experiences with you. Unless people tell you of devices such as the full support swing, you’ll never know about them and will never realise the benefit.

Every day there are more and more facilities, devices and items of equipment being developed for those with disabilities. But I know only too well that unless you actively seek them out, you’re unlikely to learn of them as they are not widely promoted. It’s not as if you will see them out in the mainstream or on the shop shelves.

All of my physical aids have been found through word of mouth, searching for something to solve a certain issue or sheer inventiveness. So, if this blog can help at least one person out there, I’ll be happy. After all, until someone told my parents about the full support swing all those years ago, they were none the wiser. I may never have had those hours, days and years of enjoyment.

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


I miss… I’m thankful #11

I miss… horse riding.

Whilst at primary school I learnt to ride on horses owned by friends. My mom has always loved horses and was quite an accomplished rider herself as a youngster. So, it seemed obvious that I too should learn, spending time with my friends at their paddock, having fun trotting around the fields.

I was small enough and light enough to be thrown up onto the saddle. I’m not delicate so I didn’t mind. A few bruises here and there was worth the enjoyment.

I was good too. Considering at that time I could only walk around my home or the classroom, and I had noticeable scoliosis. When on horseback I somehow sat up straighter than ever.

This all came to a stop rather abruptly, not because of my disability, but due to the fact that I suddenly developed an allergy to the horses! Yes, laugh it up. It really is so ridiculous it’s funny. Literally overnight I couldn’t go near them without streaming from the eyes and sneezing uncontrollably.

I’m thankful… that I was fortunate to have had that experience at all. Many with muscular dystrophy are unable to take part in such physically demanding activities.

Despite my rather comical allergy, I too am no longer able to ride horses due to the progression of my condition. As much as it would amuse onlookers, if I were to try now I’d simply fall off and land in a heap on the floor!

Oh well, here’s to the memories.

I miss… I’m thankful #10

I miss… not having to worry about catching every virus circulating throughout society.

Our school days are spent often in damp, stuffy classrooms surrounded by snotty, sniffly kids. Coughs and colds are unavoidable.

When I was at school no one bothered with antibacterial hand gels or antiseptic wipes to contain infection. This was back in the days when disposable tissues weren’t commonplace. I remember my dad sending me off with a handkerchief shoved up the sleeve of my school jumper. How hygienic!

But I never worried. Obviously no one wants to get ill unnecessarily. But back then, if I did catch the latest cold I’d struggle for a week, taking time off school (silver lining!), and after a course of banana medicine (who remembers?) I’d be fine again.

I won’t lie, I did suffer a few bouts of pneumonia throughout my childhood, for which I required hospital admittance. But again, back then there were no complications. I got ill, I sought treatment, and I recovered without much concern.

These days, the struggle is much greater. As my condition deteriorates, the ability to fight even the most trivial of respiratory infections becomes much more difficult. Treatment is much less straightforward and not without complications. Recovery time seems to extend with every illness. Hospital stays are much longer and far more stressful not only for me, but also my family and the doctors who try to fathom how best to care for me.

I now take every precaution possible to avoid contracting viruses. A slight sniffle for the average Joe can quickly develop into something very serious for me. For those of us with muscular dystrophy, a cold is never JUST a cold.

I’m thankful… for my family.

I’ve said this before but I really am incredibly fortunate to have the family I do. There’s only a few of us – I have no aunts, uncles or cousins. But we are a close, loving and supportive unit.

It may seem harsh to say, but friends, especially those from childhood whom I don’t see too often – people grow up and move on – don’t really understand how my muscular dystrophy affects me. They see me on a good day and assume that’s how I am all the time. Unlike my family, they don’t witness me at my worst, nor do they see the progression.

Don’t get me wrong, I appreciate all my friends. It is by no means through ignorance that they can’t comprehend just how fragile my body and health is. I just think that unless you live with it yourself, or with someone like myself, you can’t fully grasp the situation.

Unfortunately muscular dystrophy is not a widely recognised condition. If you approach someone at random, they’re unlikely to have even heard of it. Neuromuscular consultants and specialists have limited knowledge, particularly of lesser known forms such as Ullrich, which is what I have. So sadly, we have a long way to go in raising awareness within society.

It is for this reason, that I feel so secure in the knowledge that my family are always here to support and care for me, no matter what. No one understands the struggle, the fight, the fear like my family. And I do include medical professionals in that statement! In my experience, doctors don’t always know best. When the shit hits the fan, I know I can rely on family to do what is best for me. I do not take this for granted.

I miss… I’m thankful #9

I miss… being able to wear (pretty much) whatever I want.

As I have aged and my condition has deteriorated, so too has my physicality. The progression of my scoliosis has caused considerable asymmetry and shortening of the torso, making the task of finding suitable clothing increasingly difficult.

These days I live in a uniform of black leggings and baggy tops, jumpers and cardigans. As much as I’m interested in fashion and the latest trends, just like most women my age, my sartorial priorities are now very different to what they were some 15+ years ago. I favour comfort, practicality and insulation over aesthetics.

I wish I could wear short skirts, skinny jeans and tight-fitting dresses as my peers do. But I just can’t, that’s the way it is. Let’s be honest though, as frustrating as it may be at times, it’s really not the end of the world!

I’m thankful… I can still put my own makeup on.

I’m not a girly girl, never have been. I’m not the type to wear makeup every day. But I am an artistic type and fairly particular to boot. By that I mean that if and when I do wear makeup, I like to do it properly. I can’t just slap it on.

Thankfully I still have the strength, grip and dexterity to apply my own makeup with the precision I strive for. I appreciate that many with muscular dystrophy lack or lose this ability and must therefore rely on others to carry out the activity for them.

I miss… I’m thankful #8

I miss… the ability and freedom to be spontaneous. Once you become reliant on others for, well, pretty much everything, the privilege that is spontaneity is no longer yours. I miss my days of youth when I could leave the house in my wheelchair, not a second thought or care in the world. As a kid the worrying and pre-planning was the duty of my parents. These days I have to schedule and organise my own outings.

How am I going to get there? Who will take me? What do I need to take? Will it be accessible? Will there be accessible loos? Will the accessible loos be clean and clear of clutter or are they being used as store cupboards as many are? How long will I be there? How will I manage while I’m there? How will I get home? And so on…

Even the days I don’t go out require consideration. I can’t be really lazy and lay in bed all day if I want to because I rely on carers, and they need to know what time to arrive. I can’t sit up all night or have friends round and socialise without wondering what time they’ll leave because again, I need a carer to get me ready for bed.

My life these days is very routine, very monotonous and very regimented. My mind, spirit and personality however is not at all regimented, disciplined or cautious. There are times I desperately wish I could just rise from my chair and run out of the house, to nowhere in particular. Just run: me, myself and I. Complete freedom of body and mind. No restrictions.

I’m thankful… I have my electric wheelchair which offers a great deal of independence. Until the age of 10 I had only a manual wheelchair which I couldn’t self propel and was therefore dependant on others to push me wherever I wanted to go. Many times though I was positioned awkwardly or simply abandoned somewhere I really didn’t want to be. Since using a powered chair, there’s no way I could return to using only a manual wheelchair. I can roam around my home and garden independently – a simple but significant pleasure. I can get exactly where I want to be when I’m out and about. Put simply, it’s a slice of freedom. It’s not the same as having a fully functioning body, but I certainly count myself lucky that I have my electric wheelchair as I know not all who need them, have them.

I miss… I’m thankful #7

I miss… sitting on the floor and being able to roll around and play with my dog. As a kid I moved around the ground floor of our home pretty swiftly on my bum. But as I’ve aged my scoliosis has become more severe, thereby affecting my balance and posture. This makes sitting anywhere that is not suitably cushioned and supported impossible these days. Sometimes I swear the dog looks at me as if questioning why I won’t get on the floor and fuss her.

I’m thankful… I still have a dog! She’s getting old but still has her moments of sprightliness. She’s 13 now which is a good age for a Labrador. I know she hasn’t long left but she’s seen me change so much over the years. She’s been here through the good days and the bad, her loyalty never faulting. When I’m ill she’s a constant presence, a source of unconditional love, comfort and companionship. I truly believe in the healing power of a beloved pet.