With the crutches being used again to help me get about, MrH has been opening doors and closing them, when we have had to go out. As he pointed out, I’ve been wanting him to open and close the car doors like this for a while, so I’m enjoying it immensely. I wait in the car for him to walk around and open the door. He offers me his hand and helps me out. I’d like to say it looks elegant but the reality is I huff and grunt in pain as I try to manoeuvre my body out of the car. Being a gentleman he doesn’t laugh. The prompt for Wicked Wednesday this week is relationships, and I decided to talk about my relationship with my body.
In bringing out the crutches I have felt a certain amount of defeat and the crutches are not the only thing that we have had to dust off. I’ve contacted my local authority for an assessment for extra help because a lot of the things they provided back in 2008 we no-longer have.
Sometimes my relationship with my body reminds of the lines from one of the songs from Evita, when she is feeling betrayed by her body…
“What is the good of the strongest heart,
In a body that’s falling apart?”
From Waltz for Eva and Che.
I really wish this wasn’t how I felt, betrayed by my body. I know I’m not the only person with disabilities, I follow Eve Adler who writes excellent stuff about how disabled people still want to have and still enjoy sex. If you haven’t already come across her blog I recommend it. I feel that I am letting people down when I can’t function the way a healthy 45 year old can. I should be able to put by pants on. I should be able to dry by own legs. I managed to shave my legs yesterday but it took effort and a diazepam. I only have one left, but I am going to see the GP tomorrow because my normal meds (tramadol) are just not cutting it.
So, what kind of things do I need help with?
I’ve had to get the raised toilet seat out, which I admit helps a great deal but mentally it makes me feel so useless.
I’m going to be asking them to provide a number of things which will essentially make our home look like it belongs to an elderly person. And please don’t think badly of me for saying that, it’s just that you kind of expect that what you get older you need extra help. I didn’t think that at the age of 34 (when this first started) or now at 45 that I would need this kind of stuff.
First of all at the moment I am struggling to roll over in bed. It is absolute agony. However, the clever people in the world of disability aids have come up with a thing that can help.
A sheet that you lie on, which is made of a silky, low friction fabric, so when you move to roll over the material slides over itself reducing the strain on your body. There is a video below by one of these manufactures snoozle that explains how they work. I mean it’s super clever but I didn’t think I would need something like it. Rolling over in bed shouldn’t be harder work than lifting weights!
Then there is sitting up to get out of bed. At the moment I am keeping one of my crutches at the side of the bed so I can use it as leverage but it isn’t ideal as it can slip.
There are two different types of things that could help with this, a wall mounted rail or an under bed rail. I would prefer the wall mounted type, as the under bed ones can sometimes be felt through the mattress, and the wall mounted one can be moved out of the way more easily for those kinky moments, or when my back is not as bad.
Getting in and out of bed is also a problem at the moment, so the final bedroom related item I will be asking for is some raisers to make our bed taller. The higher the bed is the easier it is to get in and out of, have a think about beds in hospitals, you get out of them and you’re almost stood up straight away. So if we can make our bed higher than it will be easier, and there are several different types of raisers available, and different heights.
As a side benefit this will mean that when MrH is stood at the side of the bed fucking me he will not need to have his legs bent and he will be more comfortable. So this adaptation won’t be such a hardship, and we will be able to fit a little bit more under the bed.
Our shower is an over bath one, but at the moment I can’t get in or out of the bath to use the shower without help, and there is no way on this planet I could actually sit in the bath or get back out of it at this moment in time. Now there are a few options that the local authority will offer me. They could put grab rails on the walls and give me a slide to use.
The slide which sits across the bath, you can sit on it and swing your legs into the bath, then using the grab rails stand up. Alternatively they could fit a walk in shower/wet room with a stool for sitting on if i need to rest while washing my hair, and so on. Part of me would prefer the wet room option but then I would feel guilty, because MrH loves his daily baths. MrH has already said that this is not an issue and it is more more important to give me more independence.
I will also be asking them for a different toilet seat – one with a lid! I absolutely hate not being able to put the lid down on the loo and I need grab rails to help me up and down off the loo. The one thing they don’t do which is quite annoying, is making taller sinks. Think about brushing your teeth. You stand at the sink and brush, but you have to stoop to spit into the sink right? Standing back up kills me, but perhaps with the other things in place I may find I can cope with that one action a little easier.
The final area that I will be asking for help with is travelling. I am going to ask for a swivel cushion that helps you get in and out of the car. Rather than having to twist your body you turn on the cushion the same as you can on a computer chair.
I am also going to apply for a disabled parking badge which will mean we can park closer to the shops and in larger spaces so we can open the doors wider.
It isn’t easy to get these badges but I need to try.
With all that’s going on at the moment MrH is being so amazing, as he always is. He continues to make me smile and laugh, as well as spoiling me rotten and of course I can only hope that by the time things normalise, and I hope that they do, that MrH opening doors will have become habit and he will continue to do it.
For more posts about relationships which is the prompt for Wicked Wednesday #386 click on the image above.
Previous posts on chronic pain: