Wheelchair user v fashion

Today is a huge contrast to the last time I was sat here at the keyboard. Today is it cold and wet.
This is the second time this week I have been out for a walk (roll) with the dog (and my husband) in the rain and had to cover myself with a blue plastic sack (advertised, packaged and sold as a rain mack).

Luckily I have never been into fashion, seasonal wardrobe changes or shopping, but I did always have my own style and self respect.

Since my health has been worsening I have had to give up a lot of things- I mean a whole lot. My life has completely changed, in every single way you could think of. I struggle with that on a daily basis and am still finding it scary and difficult to come to terms with (yes, I am getting professional help with that, well I was before this coronavirus rudely interrupted it anyway).

Having to use a walking stick, then a rollator was terrible. I felt so self conscious about it, especially the rollator (basically a zimmer frame with wheels). I bought the one that least looked like a zimmer frame and it was extremely useful for a while, but then that had to go too.

Using a manual wheelchair was hard. Having to be pushed around by someone and relying on them for everything when I had always been so independent and active sucked (I can't think of a better word). In a shop, I would want to look at something but the person pushing me would accidentally go straight past it, then I felt too embarrassed to ask all the time to go back.
The self propelled wheelchair I had after that was a bit better, but my arms soon got too weak and painful to use it other thn on flat and smooth surfacees (very limiting). Hearing my friends and family struggling to push me and my chair up a hill was awful. I felt so guilty about it I would try to avoid going anywhere where that would be needed. (my friends and family never complained and would hate to know I felt that way, but I think it is natural to feel guilty if you know you are making something difficult for your friends or family).

With self propelling atall I had to stop wearing the bangles and fashion rings I have always loved wearing.  They constantly got caught in the wheels and hurt my hands.
I had to stop wearing jeans because the stitching details and little fixings would dig into my skin where i was sat down in the chairs. That meant leggings or joggers. I had never left the house in joggers before being in a wheelchair. I lived in jeans and a t shirt/top and a jumper.
Leggings are a great option and I love wearing them, but they are not made for sitting down in. They do not come up far enough at the back. Constant builder's bum isn't a great look!
I had to change my clothes entirely over time. I have longer tops now, to hide the gap left by leggings at the back, dresses I can wear with long socks (I love those) or snag tights (lovely colours and options available there) and joggers.
When I am out of the house and need the toilet (sorry but this is important), I need someone to help me pull my clothes back up. If this is family I will wear anything, but when it isn't family there is no way I am wearing tights or leggings! I don't have much dignity left, but that little bit i am gripping on to with my bitten and cracked fingernails.

Often when I am out and about, I will have joggers and a top on because tht is the easiest for whoever is out with me and will need to help me. I have surrendered to that fact.

So the joggers, the long tops and the fact I need help in the loo has all become acceptable-ish now. But, as if to stick two fingers up at me, my body has caused me even more issues over the last few months and made my feet swell up so much I can no longer wear any of my shoes.

Again we are not talking Jimmy Choo's (if that's how you even spell it), but ex army boots and a pair of converse. I have put up with it for months now, had loose laces, compression socks, but I have had enough of that now. It hurts and I have enough pains all the time that this was an easy one to help.
So, I went onto the quickest large deslivery website we all use and ordered myself a pair of pink shoes for people with swollen feet (oedema). Then, with the weather change, we went to a local store and purchased a pair of woollen socks for people with oedema and a pair of full shoes in navy.
The selection there was awful. Literally, my 90 year olf grandma would have refused to wear any of them. But needs must.

So now, I am the (not so proud) owner and wearer of old person's velcro, no grip soled fabric shoes.

In the evening, when the shoes come off, there are still dents in my feet from the gentle, loose velcro, but atleast they don't hurt to wear (physically anyway).
I wish there was a pair that looked like converse, were a nice colour, had patterns on that weren't floral (you know the type). Why can't designers make shoes for younger people who have swollen feet? for younger people who use a wheelchair?

I have found some online that are more acceptable, but still aimed at the older customer, but the price on them is ridiculous (as with most things designed for people with disabilities). I can't even walk, so there's no way I am buying expensive shoes i don't even like!

To add insult to injury, this week the weather has turned as mentioned above.
My dog doesn't care what the weather is like. She needs a walk regardless. So, on go the old person fabric shoes with no grip whatsoever, the oversized coat (the only way we can manage to get my arms in without a lot of pain), the migralens glasses (to help prevent migraines) and the blue plastic bag.

You might be thinking I am exaggerating here, but I promise you I am not

It covers every part of me except my hands and face. I hate it.

I spent a considerable amount of time searching the internet and social media for a more friendly option but found nothing. There was navy blue or black, lined or unlined. That was that.

Why is it that people think this is alright? Would you wear this?

I said to my husband today.....I could be naked under here and noone would know! (far too cold for that today but something to think about when you pass anyone wearing one haha!).

In an ideal world, my shoes would be soft and fastened by velcro but be purple/pink or patterned like a trainer. The "mack" would have some shape to it, made using a pattern and elastic. The hood would be larger and have a peak to it to keep the rain off my face, and there would be gloves attached for driving the chair around.

Another thing whilst I am going on like this....what do people think we do when we get home from a walk in the rain/blossom/muddy paths etc. We can't take our shoes off and walk into the house in clean socks or slippers. We have to clean our wheels and then go inside. I have six of them and chronic fatigue and chronic pain. it is honestly such a nuisance. Is there a solution I haven't found yet?

OK, I am done moaning/venting now. If I could sew well enough i would make these items above, Perhaps someone will read this and use it as a business opportunity.....who knows.

Until that happens, stay safe everyone


PS- I don't know if it is a mack or a mac. But you get the idea :)

Everyday disability aids

Following on from my last post I started thinking about the disability aids for everyday living that I rely on, and through it may be useful to share the knowledge I now have with you. If we all do this with eachother then over time people will come to find what they need.

When I was still able to move around with relative stability, but was starting to feel a little off balance I started using our Nordic hiking pole. This was OK and provided me with some support to keep me upright, but did put strain on my hand, wrist and arm.

I then changed this for a walking stick. I found this a very difficult step to take (excuse the pun). I felt too young to be using one and that it would draw unwanted attention to me. Then I decided that life is too short to worry about what other people might think and went ahead with the purchase of a pretty one from online. There are many many different styles, colours and types available and I would suggest taking your time to think about how often you need to use the stick, where you are likely to be using it and how you feel about using one. I opted for one with a formed handle for my right hand. This was so I had my dominant hand free to hold my child’s hand, carry a bag or press the crossing lights. I didn’t get a folding stick because I was concerned about the stability of them and knew I would need mine all the time. I also knew I would need a wrist strap so I could use both hands to do things without worrying about dropping the stick on the floor. I was feeling very self conscious so opted for a brightly coloured one that I felt suited my personality. It was such a relief at first. The pain I had been experiencing from the use of the pole went, but then was replaced with a patch of hardened skin which became sore on the heel of my right hand. I was becoming less and less stable as my condition progressed so was relying on the stick more and more. My shoulder was becoming sore from the strain of using the stick on one side so I knew it wasn’t the best option for me anymore. I was also becoming exhausted very quickly now and needing to sit down to rest regularly. I had purchased some racquet tape to wrap the handle with to try and reduce the pain in my hand by then too and it kept peeling off and the ridges of it were being a nuisance and causing irritation to my hand.

I had a look around as I was determined to stay as active as I could and purchased a rollator which folds, has a seat with backrest and a large bag that is easily detached. I tried a few in the store and found the cheaper, metal frames made me think immediately of the elderly and I couldn’t bring myself to use one. Besides this the seats on them were solid and uncomfortable for my lower back and hips and they folded differently to a wheelchair so I couldn’t think how to do that myself without falling over. I found some of the rollator brakes were too hard to put on and off and some of them were difficult to lift so I couldn’t imagine how to get up kerbs with them. I wanted one with four wheels rather than two and two stoppers so it could continually move without me having to lift it as I knew that would wear me out quicker. The rollator I bought folded like a wheelchair and looked different to any I had seen before, which made me feel better about it. I could sit down whenever I needed to, take the bag off quickly and easily when needed, fold it up like a wheelchair myself, the handles and brakes were ergonomically designed with a gel like coating and it had kick steps for getting up a kerb.

I soon realised how limiting it was not being able to carry things around at home and my rollator was no use for this because I had opted for the one with a flexible and softer seat. I therefore searched online for a second hand or cheaper rollator with a tray, purely for use inside the home for carrying toys, drinks, snacks, magazines, medicines etc so I could furniture surf less and feel more stable too. I found that the brakes were not as reliable indoors as they skidded easily on the carpet so I couldn’t rely on it 100% but it was definately an improvement over nothing but furniture surfing. I found a very cheap rollator on an auction website with a front basket, fitted tray with a lip running all the way around and simple hand brakes. It meant I could keep my drink, a snack, medication and supports in one place and with me in the house so I didn’t have to ask anyone to help me or search for them either.

I was already finding getting around extremely hard going by now, using the rollator indoors and one outdoors and being exhausted the rest of the time. This is the front of my house:

There is a side gate which is swollen and rotten so very hard to open with two hands, let alone whilst using a walking aid and going up the steep incline to it. This does then lead to a narrow path around to the back door which has a high step into the kitchen area of the house. The whole path is on an incline and getting from the car, up the hill, around the house and then up the step into the kitchen was never going to happen. By the time the OT (occupational therapist) came out to assess me at home I had gone from being able to trundle around slowly with my rollator to needing a wheelchair. My husband was lifting me down the steps to get me out of the house, getting me to the car to sit on my wheelchair cushion in the passenger seat. I was very wobbly on my feet and when pressure was put on my feet or legs they were tremoring uncontrollably and my left (dominant) arm was doing the same. We had bought a basic wheelchair with self propelling wheels and non inflating wheels with textured tread for everyday use so I could get out and about with a lot of help.

I was also using this to drink from:

A bed rail to help me sit up in bed and get out of bed:

And these bed raisers to make it easier for me to stand up without launching myself forward off the bed:

They looked at me and wanted to see me manage the stairs down from my bedroom. They saw me bum shuffle downstairs and then collapse on the sofa in the lounge, exhausted. There was no way I was going back up straight away. Getting myself up the stairs at that point took everything out of me physically and emotionally and often I would then be stuck at the top of the stairs with too little energy to do anything but crawl to the bathroom/bedroom. Sometimes I couldn’t even manage that.

They suggested I move my bedroom downstairs. I was so reluctant because our bathroom and toilet are upstairs and we only have the one family room downstairs which is a thoroughfare to the kitchen and back garden from the front door. Whilst we were still debating it I had a few falls getting to the bathroom which made our minds up for us. The day we moved downstairs I was devastated. I lay on the floor whilst the bed was being moved and sobbed my heart out. There was something about seeing my bedroom being in the lounge downstairs that made it all really hit home. I still find it hard now, months later.

The commode and perching stool (for use when I have a wash) had arrived, I had found out about these:

And was on the lookout online for a reclining chair, desperate not to be sat in bed all the time. I kept being told we didn’t have the room for a reclining chair but I can be fairly headstrong when I need to be and went ahead and got one delivered when my husband was busy. It was quite low and hard to get up from, but so comfortable to be able to lie back and relax in.

We also had a second wheelchair by now for use in the house. It was a cheapy one from online but meant I could safely get to the kitchen (not that I could reach anything in there) and feel able to move around a little bit. When the council arranged for this to be delivered it also meant I could be pushed outside to the back garden (once the person pushing me manages to squeeze my wheelchair through the doorways where there isn't enough space for my fingers, and gets me over the threshold to the ramp!):

It wasn’t long before I realised that I couldn’t be out for long in the wheelchair before I was exhausted and needed to rest, and this was cutting any days out short for the family. I started to look at options such as wheelchair headrests, half expecting them not to exist, only to be surprised to find a tilt-in-space wheelchair with adjustable headrest available on an auction site. It was in excellent condition and absolutely perfect for my needs, plus it folds to go in our current car with a bit of effort from my husband. It takes up most of the boot and is heavy to lift, but it means we can all go out together on a good day and stay out longer than we could before. I have since also found a rise and recline chair on a local selling site which I have next to my bed too.

The everyday things I rely on are my long handled comb:

My grabber stick (see above photo)

My drinks bottle

My medicine organiser (the pharmacist could fill a foil tray for me monthly but this would only contain my prescription medications, not my antihistamines or additional painkillers and vitamins):

My Echo dot:

My commode and bags

Cups with handles and a straw:

A bean bag lap tray:

A weighted pen holder:

These products for easy body care:

A wide variety of body supports that secure easily with velcro and my furniture.

I also have this little beauty who keeps me calm and is so cute I simply couldn’t resist:

We also have a wooden transfer board, a pill popper that gets tablets out of the foil packaging several grab rails from when I was walking about but unsteady and a bottle/jar opener tool. There was even a section on This Morning today where they showcased several daily aids (yes, they used elderly people).

Most of my items have come from Ableworld, eBay, Facebook marketplace with some from Amazon. I do shop around online for the best deals on any items I need and compare postage, how urgently I need the item, cost of postage and reviews of the sellers. For this reason I have not included links for the sellers of the above items. They are all available at more than one outlet.