Many people over the years have been curious of how I do certain things with having a progressive muscle wasting condition as I do my best to continue to do as much for myself, while I still can. Although some people get a bit too personal with their curiosity, the majority of things I have no issues what so ever answering as I believe in order for able-bodied people to understand our world, we have got to help them become more open minded to differences. Not only that but people within the disability community themselves generally do like to troubleshoot and share tips and tricks on ALL sorts of mobility challenges.
So I thought why not do a blog post on it? If it gets alot of interest, I may even include some video clip examples so be sure to comment down below if that’s something you’d like to see in the future.
Let’s get into it…
1. Doing my makeup
As my arms are weak and I cannot lift them above mid upper arm level my methods are to either prop my dominant elbow on a higher surface. So due to lack of wheelchair access in our home (see my blog Locked-Out – The REAL Cost Of Senseless Social Housing Policies to understand our housing situation if you’re interested). I actually do my makeup in the kitchen mostly by propping my right elbow on the worktop I’ll be parked sideways next to. By doing this it takes the weight/strain off my arm that my muscles aren’t strong enough to hold up. Or I’ve also been known to prop my elbow on a firm sofa cushion on my lap or even lying in bed so I’m not fighting with gravity. Gravity is not Muscular Dystrophy’s friend! I also have most of my makeup pre-loosened as my hand weakness means I cannot break the seals of new products or unscrew very tight lids, so if I can get away with it (without product leaking all over) they’ll be screwed on gently.
2. Handle talking on the phone
By this I mean actually holding the phone to my ear for the duration of a phone call is problematic. So mostly I use what I call my “support arm,” by cupping my right elbow pushing upwards to keep the phone to my ear or else my arm will give weigh. I basically look like I’ve got my arms crossed in a huff when on the phone 😂. Gotta laugh! Another way around this is I sometimes wear a Bluetooth earpiece but have a habit of constantly losing it or it won’t stay in properly so doing the “support arm” method does work best.
3. Press hard buttons
I like to operate things myself but there are some buttons such as my electric toothbrushs, ceiling track hoist remote buttons and thru-floor-lift remote buttons I cannot simply just push a thumb down on. This is due to dexterity weakness and hypermobility (symptoms of my condition also) so when I try and press a stiff button as you would, my finger or thumb just bends backwards and not enough force is then applied. So instead I use both hands, cross my thumbs over each other for a stronger push.
4. Choice of size & style of clothes
Like many wheelchair users, I go a size up for bottoms and sometimes fitted coats/jackets just so they’re easier to get on and off. Same with shoes as my type of MD does affect the overall structure of my feet. I also avoid certain styles that I know are just too difficult to contend with unless it’s a special occasion to avoid needing more assistance. Despite this sounds an awful lot to think about, there’s still a great lot of style to choose from that does work for me.
5. Manage my paperwork
I find it easier to have digital copies of all my paperwork as apposed to having a big heavy file, packed to the brim with hospital appointment letters, paper bills, receipts etc so I can access them independently. So whenever I get a letter through the post that I need to keep ahold of, I immediately take a photo on my phone and upload the file to my Google Drive that I pay for monthly so I have enough “cloud space” (for lack of better terms) for the amount of files I need to save permanently. Then I discard the letter. I do however still keep hard copies of your most important documents such as most recent benefit award letters, Birth Certificate, housing documentation etc.
If you have a disability, what techniques have you come up with to do things you struggle with that you’d like to share with others?