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.

I miss… I’m thankful #5

I miss… midnight snacks and being able to sit myself up in my electric bed to have a drink during the night. Since starting nocturnal NIV (non invasive ventilation) this small pleasure has become practically impossible since I have a mask bound tightly to my face. Drinking is possible with a nasal mask but eating is very difficult as there is an increased risk of aspiration.

I’m thankful… I can eat whatever I want and am still able to feed myself. Unlike many with muscular dystrophy, I don’t have a PEG feeding tube and so all my calories and nutrition comes from the food I put in my mouth. Although I get very full on small quantities of food, I do like to go out for meals with family and friends.

I miss… I’m thankful #4

I miss… sitting in cars on a car seat, particularly the front seat, rather than having to travel in my wheelchair. These days I have to travel in my electric wheelchair at the rear of my Motability vehicle, as transferring is just too difficult.

I’m thankful… for my wheelchair accessible vehicle which allows me to get out and about with ease. I no longer need to be manually lifted in and out of cars. It makes life so much less stressful.

I miss… I’m thankful #3

I miss… playing my clarinet, which I can no longer play due to my declining respiratory function (I was pretty good too!)

I’m thankful… that having now sold my clarinet, someone out there is learning to play and getting as much enjoyment out of it as I did. Plus I’ll always have the knowledge of that achievement. I LOVE music and listen to some form every single day, though I’ve never been a natural musician myself. So to have learnt to play an instrument to a good standard is something I’m proud of.

I miss… I’m thankful #2

I miss bumping down the stairs on my bum as an infant. ‘Bum shuffling’ as my mom calls it kept me pretty mobile around the house as a kid.

I’m thankful… I can still sit on the sofa if I want to and don’t have to remain in my wheelchair all day. It’s good to move around in order to remain as flexible, and as comfortable as possible, even if like me it means being manually lifted.

Learn more about me…

Since I’m fairly new to the blogging scene, I thought it would be beneficial for all if you knew a little more about me and my everyday life.

As someone with a disability, the inevitable question arises now and again: how does it (in my case muscular dystrophy) affect you?

There’s no easy answer to this question, particularly since it’s a progressive condition, meaning that symptoms worsen over time. Furthermore, there are many different types of muscular dystrophy, all of which vary considerably. As in life, no two people are ever the same.

To give you some insight I have decided to offer regular snippets of my experience with Ullrich congenital muscular dystrophy.

I had considered writing a detailed piece about the everyday challenges I face and how I have adapted over the years. But in the end I felt that might be a little, well, boring for you guys. Plus, this open diary (if you will), can be ongoing, allowing those who are interested to see how my condition continues to develop.

Perhaps this will help others, particularly those younger than I as well as parents of children with muscular dystrophy. Perhaps…

For the first week I will upload daily to give you an idea of where I’m going with this! Thereafter, I’ll upload once a week.

So, here is the first entry…

I miss… snuggling up in bed without having to wear a mask to breathe. As anyone out there who relies on NIV will know, it’s an incredibly difficult thing to adapt to. The mask is (for me anyway) extremely uncomfortable and needs regular adjusting throughout the night to avoid sores and the escape of air. I have always struggled to get to sleep without the addition of a mask tightly strapped to my face. It is of course something I wish I didn’t have to endure but, it serves its purpose. Quite literally – adapt or die!

I’m thankful… I can still breathe well enough to manage without daytime NIV (non invasive ventilation). I sincerely hope I never come to rely on my BiPAP machine for daytime support as well as nocturnal ventilation. However, I’m realistic and so am aware this could happen in the future. Therefore, I try my best to make the most of my days as they are – mask free. As cliché as it sounds, your life really can change in a day. So make every day count!