Month: March 2017

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… 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… 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… being able to eat without becoming uncomfortably full, breathless and fatigued after small quantities.

I’m thankful… I can still eat normal food and don’t have to use a PEG feeding tube for sustenance.

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… 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… 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.