Well today is my 9th ME-versary and I didn’t know how to mark it. Looking back on the year things have improved drastically as I said in yesterday’s post. So on today’s ME-versary I’m feeling much more positive than last. After 9 years of being ill, I’ve nothing to really grumble about – I’m moving in the right direction – and no one wants to read a blog post full of moans anyway!
Bearing this in mind I have decided on a post I hope will be useful to some, and give an insight into my life for others. So without further ado I present to you…My Essential Aids to Living. A post full of all the things I need in order to have a bit of independence and get out of the house. Some are shop-bought, others are ingenious ideas but they all help me in some way.
The Perching Stool
My perching stool post washing up. |
For any task that requires standing for a length of time I often require my perching stool. Ironing, washing up, preparing food, sometimes even just making a drink can involve me needing to have something to sit on as it doesn’t take as much energy as standing. Besides there are occasions when my legs absolutely refuse to support me! I recently discovered when washing up or preparing food it’s much easier to have an open cupboard in front of me rather than wedging my knees against the cupboard door!
My shower stool in the shower. |
Chunky Handled Cutlery
Our polka dot chunky handled cutlery. |
Large Handled Mugs
My large handled mugs for cold drinks. |
Something I discovered early on in my illness is that glasses were more dangerous than anything else – they just slip through my fingers and I end up very wet! So we’ve had to invest in a number of mugs with suitable sized handles; not always an easy task when buying a mug without going to a store! But after a number of years we now have a collection of useable mugs for me. I’ve got some large mugs – often described as latte mugs I believe – which I use for cold drinks.
My large handled mugs for hot drinks. |
I always have one of these filled with a soft drink whether it be day or night as it helps keep the dizziness at bay as well as soothes my constantly sore throat.The ‘normal’ sized mugs are used for any hot drinks I have throughout the day. The advantage of having this large handle is I can have my hand around the mug (if the drink is cool enough of course!) and my fingers through the handle meaning it’s almost impossible to drop the mug completely and I’m less likely to spill my drink down me.
My toothbrush complete with foam curlers. |
My crutches for downstairs and going out. |
I have a potentially strange setup with my crutches. I own two pairs; one provided by the NHS, the other bought off the internet. I’m betting you can tell the difference from my pictures! Currently I have one pair, my posh web-bought pair, at the bottom of the stairs. These are used around the house and garden when necessary as well as when I go out. This pair has some comfy grips on the handles which reduces the pain of using them for a lengthy period. They are also have an open cuff meaning wearing a thick coat isn’t a problem!
At the top of the stairs. |
In my room. |
I keep my NHS pair upstairs. When I’m very bad they’ll both be at the top of the stairs if I’m downstairs, or in my room with me if I’m up there. Currently because I’m not too bad I have one at the top of the stairs and one in my room. This means if I get up in the morning and find my legs aren’t great I have one with me for support or if I get upstairs and find I need a bit of support there’s one there to grab too. If at any time I’m going upstairs and feel I’ll need both when I reach the top, I ask my parents to get the one from my room and put it at the top of the stairs with it’s partner! My NHS pair also have pipe insulation and sweatbands on the handles so they don’t hurt my hands quite as much; I used to get horribly sore and blistered hands from using them so we had to come up with a solution for that and of course pipe insulation was the obvious answer!
The Folding Walking Stick
Folded, |
Upright. |
Whenever I go out without my crutches (a very rare occasion right now) I carry a folding walking stick in my handbag, ‘just in case’. It has it’s own plastic bag to keep it folded up and any dirt out of my bag! However this is starting to fall to pieces and I will have to see about getting a new bag, maybe even making one. This stick has been a regular in my handbag since around 2009, when I was at my best but still occasionally needed some support when walking. The best part of this stick in my opinion is that not only does it fold up but it has a jazzy floral design AND gives me an excuse for a large handbag! In recent years it has had a bit of a break since I’ve required my crutches more, so it’s been left resting in a handbag under my bed.
My Posh One |
The Dark Sunglasses
My dark glasses. |
The must have accessory for any person with ME. For me it’s been a struggle to find any cheap sunglasses for this purpose – wearing glasses all the time and not being able to see without them I can’t just go out and buy any old sunglasses. While my eye sight is still changing each year I refuse to buy prescription sunglasses on top of the price of my glasses. So I have two of this rather unstylish pair which fit over the top of my existing glasses; one lying around the house and another in my handbag, as you probably guessed! I find these help not only for the sunlight outdoors but sometimes for the sunlight indoors, the main lights and also the fluorescent lights many shops and doctors surgeries have. All of these hurt my eyes and can leave me with horrific headaches. I even use them when on my laptop or tablet whether I’m studying or just browsing the web!
The brush fitted as a lid on the pot. |
The brush and pot. |
And not forgetting ‘Bob’ my Wheelchair
Meet ‘Bob’ with an extra cushion. |
Yes I’ve named my wheelchair ‘Bob’! I figured since I rely on it so much to get out it might as well have a name and is often referred to as ‘Bob’ and as such a male! He is the best wheelchair I’ve had by far (I’ve had one other but used a total of 4 during my 9 years of M.E.) I can even manage to self-propel myself a little bit these days which gives me a little bit of independence in shops. Without ‘Bob’ I wouldn’t be able to get out much at all; I can just about make it up the road to the corner shop on crutches at the moment and even that takes requires a long rest afterwards!
‘Bob’ can even hold crutches! |
Pam Day
Thank you so much for this blog Clare. I found it very interesting and informative. It is surprising how creative we can be when we can’t get exactly what we want exactly for our needs elsewhere. I hadn’t come across your bloggs before but will definitely look out for them in future.
Best wishes
Pam Day
Clare Wood
You’re very welcome Pam, it was written a few years ago now and there’s a few things I now need to add to it, so will have to start working on an updated version when I have the energy. Creativity has saved my bacon a few times over the years, the most recent creative idea my family have had is to put a doorbell in the shower, so if I need help I only need to press it and they’ll know to come running! We haven’t got one yet but I’ll be sure to blog about how it goes when we eventually get round to it.
Best wishes,
Clare
Claire Morland
Thanks so much for your brillant blog that I have just finished reading. You explain everything so well and yet is so easy to read. I have all the pieces of equipment that you mentioned and my wheelchair is called Wilfred. I can’t manage to balance or even walk round my bungalow any more without my crutches. My dad has been trying to come up with something to hold my crutches on the back of my wheelchair and despite all these wonderful ideas my dad has kept coming up with nothing has held them in place for very long when someone starts pushing me in my wheelchair. In just over 2weeks time my eldest nephew gets married and I will be in my wheelchair most of the time.,There will be time when I need my crutches and it would be great if my crutches could in some way be held at the back of my wheelchair so either I have to or my mum has to carry my crutches around all day . I am really look forward to your next blog
Clare Wood
You’re very welcome, thank you for reading it. It all depends on your wheelchair I think – I’ve recently got a new one (Currently still unnamed) and unfortunately there is nowhere to mount the crutch holders my Dad created for ‘Bob’ on it, so I know exactly what you mean. Without the “sticky out bits” used for an attendant to aid tipping the chair to get up kerbs, there is nowhere to clip the pipe clips which are bolted to the cups that hold the feet of the crutches. So I’m having the same trouble with holding them during the long waits at my recent hospital appointments, if I find a solution I’ll be sure to blog about it! I hope you are able to enjoy yourself at your nephew’s wedding.