Having a disability always sparks some curiosity from other people whether we have just met or have known each other for years. I’m used to people asking me questions and as my condition progresses, it means my needs and abilities are changing which leads to more questions and general curiosities. My friend Fi from Life of an Ambitious Turtle wrote a great post about the things she does differently living with Muscular Dystrophy. Fi asked me and the rest of the #MDBloggersCrew to do the same and share five things that we do differently. There are many things, but here are 5 things I do differently living with Muscular Dystrophy. I hope it gives a little insight into my life with a disability.
My sleeping position has changed quite a bit over the years. When I was younger I was much more able to independently get in/out of bed, lie down, sit up, change my position and turn in bed. Deterioration of my condition as well as numerous injuries including broken bones, torn knee and shoulder ligaments have all contributed to my loss of ability to do any of that now. As a result, I now sleep on my back by using a sleep system which consists of several pillows under my arms, legs and feet. Essentially the only part of my body that actually touches the bed is my back. Our bed is a profiling bed so I can adjust the back and legs, raising them up or down depending on how I feel. Its extremely comfortable though, so I can lie without the pillows for quite a while without feeling uncomfortable, but I love the support that pillows provide.
This sleep system means I do not move at all during the night and I know it might sound or look crazy, but trust me, it keeps me incredibly comfortable and pain-free. I’m as snug as a bug in a rug. The pillows prevent pressure sores and provide extra comfort for me. I never know what the beds will be like in hotels so I always take my own self-inflating travel mat just in case the mattress is too hard. I also wear satin pyjamas because they are slidey so it makes it easier getting in/out of bed and moving around.
Transfer From My Wheelchair
Many wheelchair users have the ability to self-transfer to and from their wheelchairs. I used to be able to do that when I was younger until it became increasingly unsafe for me to do so due to frequent falls and muscle weakening. Gradually I needed more help and my family would assist with manual lifting. Now I can’t stand unaided and I’m unable to walk. This means I need someone to manually lift me in and out of my wheelchair, but I also use a Molift Quick Raiser which is a sit-to-stand hoist. There are similar standing hoists available like this Oxford stand aid hoist.
Read my full review of the Molift Quick Raiser:
A Quick Raiser Made Daily Hoist Transfers Easy & Safe | Molift Hoist Review
Since I am unable to walk or independently transfer myself I prefer showers to baths. Showers are much easier and more practical than struggling in and out of a bath. I am fortunate to have a wet room bathroom with a roll-in shower at home. In order to shower, I sit in my shower chair which has wheels, backrest, armrests and footplates. Essentially it is a wheelchair shower chair. This allows me to be wheeled into the shower safely and without any difficulty.
Eat & Do My Make up
My arms are incredibly weak and I’m unable to lift my arms up. I lack any strength in my arms and hands so I need help with most tasks that involve even a little muscle power. As with most disabled people, I have found my own ways to adapt and get things done as independently as possible. I have adopted the same technique for eating and doing my makeup. To do this I must be sitting at a table and I take my left arm across my body by resting it on the table. Then I place my left hand on my right elbow, forearm or wrist (depending on the height of the table and what I’m holding) and lever my arm up. I eat and apply my makeup with one hand only, but I’ve found using my Ornamin plate helps with this and saves me chasing food around the plate with a fork as it’s easier to scope the food up. To outsiders, my technique of using my arms and movements may look at little strange or awkward, but it’s just the way I do things.
Many people take coughing for granted. Its seen as a simple act for clearing your throat or when you have a bad cold or infection. However, Muscular Dystrophy not only affects my arms and legs, but it has also weakened my respiratory muscles. This means that my ability to produce an effective cough is drastically reduced with poor lung capacity and an increased risk of infection. To help with this I use a cough assist machine which involves placing a mask over my mouth and nose. The machine then helps me take a deep breath, clear my airways, open up my lungs and cough. It’s a great piece of equipment.
These are just a few things I do differently living with Muscular Dystrophy and techniques I have used and adapted for years as my condition progresses. They may not work for others with Muscular Dystrophy, but I hope it provides insight into how I manage day-to-day and possibly helps others in some way.
Please share your own techniques and things you do differently living with Muscular Dystrophy or other disability by leaving a comment below. Help raise awareness of Muscular Dystrophy by sharing this with your friends and family.
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