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 :)

Coronavirus diary

As a diary goes, this is more of a summary of our daily life since the coronavirus lockdown in the UK which began on March 23rd 2020.

We have three children who all have autism of one form or another. Two of them have pathological demand avoidance, a particularly tricky form of autism which means any demands made or inferred cause them anxiety and distress. This often results in avoidance behaviour and is exhausting on the best days. During the lockdown we have removed all possible demands because the space we would require for calming from a meltdown simply isn't there.

One of our children has asthma which the NHS haven't classed as severe because she hasn't been hospitalised for several years, but any hayfever or cold means she has weeks of coughing and using her nebuliser before any signs of recovery are seen. She misses out on a lot due to this. So we are keeping her self isolating for her own safety. She understands and is OK with it, although she is missing her best friend terribly.

Our eldest and youngest children, who both have PDA, are struggling with the changes in routine. Day/night are blurring into one....to the point I strongly challenged them both to sleep out in a tent last night with the aim of the circadian rythym resetting a little. Our eldest refused, saying he could just open his windows and didn't need to sleep in a tent- totally missed the point of the exercise but the demand was too much so we left him to it and focussed on our youngest. She loves a challenge and usually responds well to them if worded correctly.

It turned out she fell straight to sleep and slept well all night in there, but my husband barely got any sleep and slept all morning instead, after abandoning the tent at 6am and returning to his bed.


Day to day we have been trying to have meals together and free time, with suggested time fillers and avtivities in between. With the weather being so warm and dry, they are all enjoying hours and hours of trampolining outside each day. They are also taking time out when they need it, watching youtube videos and listening to music on ipads and alexa devices.

Every day has been essentially the same, with different activities suggested, or with me starting different activities that the children then join in with.

Getting shopping in has been difficult and stressful as, not only do we have the autism related diet preferences and packaging needs, but also a lot of allergies and intolerances to different ingredients in food. Because of this we cannot use any of the general boxes from the supermarkets, but need to try and get delivery slots, failing that a clock and collect slot. They seem to go quicker than they appear online. I have stayed up past midnight to get a slot before and then not been able to get back in to edit my order until right before delivery, by which time most of what I ordered was out of stock.

The plus side is that we have been taking out dog out for a local walk most days. Our eldest babysits the youngest (we are fully contactable, local and know they are safe) ehilst we spend around an hour following the local accessible footpaths and walkways, finding new nature filled areas.

We have made varying types of slime, cooked meals together, had the usual conversations that go off tangent following the children's questions and discovered boredom busting websites. Netflix, amazon prime and sky have been used to excess for evening entertainment and tiktok has been updated far too many times by my two eldest too.

We are in week 5 now apparently- i have lost count- and I cannot see how we will leave the lockdown without a second wave of the virus spreading, but we need to trust and listen to the powers that be and hope for the best.

Stay safe x

Lockdown

It sounds like a song, or fictional in a way. I think we are all so used to disaster movies, apocalyptic programmes and films that living through and with the coronavirus lockdown doesn't feel completely real.

When we leave our house to walk the dog daily it doesn't feel any different to normal. The roads are still reasonably busy with traffic, the park still has lots of people in varying group sizes having a walk, a picnic, playing in the park or having a chat by a bench.

The daily briefings from Downing Street confirming the numbers of deths caused by this coronavirus are awful. The numbers of people losing their lives every single day across the country is terrible. It is annoying though that they keep using skewed data, presented in various graphs to make it look like they (the government) are dealing with the coronavirus well compared to other countries.
One day they use one set of data, then when that doesn't show the picture they want, they change it slightly for a different set of data for the next briefing. Thankfully some of the printed media seems to have cottoned onto this now too and is starting to question it.

Around us, there haven't been many deaths attributed to coronavirus in the community or in hospitals. There was an outbreak in a nursing home in the city, but other than that the numbers are very low. I assume this is why people are so blase about the government guidelines. I do have concerns around the lockdown being lifted and the virus spreading like wildfire in that situation.

Life in lockdown has been OK here. With my disabilities and illnesses, I spend a lot of time at home anyway and am usually here alone whilst the children are out at their activities. It has been lovely to have my husband home more and to be able to walk the dog together. The children have also commented on their lives being more relaxed and having more time to chill and less rushing about.

We are all missing our friends though. That is a really difficult part of all this disruption. For my youngest, some of her friends live on our street, so close yet so far.

With every briefing, we are listening for any changes to the lockdown, along with every other person in the country.

Friendships

Friendships when you are an adult are so much more complicated than friendships when you are a child.

I watch my children with others (partly because I know they each have triggers that need to be avoided to help with their anxiety and autism, partly so that they don't push the boundaries too far and partly because I am their mum and not a coffee mum), I see them joining in with other children, asking if they can be friends and forming games together with them. Even Miss G, with anxiety, PTSD, autism, sensory processing difficulties and selective mutism manages this beautifully.

So why is it different for adults? At what age do we stop going up to someone we see as a potential friend and asking them outright if we can be friends?

Imagine how much simpler adult life would be if we could form friendships in this way.

As an introvert, I have always found friendships difficult. I have tended to form power imbalanced friendships that have been toxic. It is only through experience and abuse that I have been able to see those for what they were.

Following domestic abuse and counselling I have ended up finding it extremely hard to trust people.

This means I often make friends, but struggle to go beyond the first stages of friendship and really open up to them, trust them and strengthen the friendships. I do find that easier online than in person, but still have my guard up. Those friends that I do have, who I have managed to talk to about real things in my life are special people.

Currently I have three of these friendships. Each of those friends are people I know I can chat to about anything and not have to worry.

Two of the friendships I have were made through Miss G. She made friends with the daughter of one of them and then we got chatting and had a lot in common. She then introduced me to her friend and we also had a lot in common. They are both parents, have had similar relationship dramas as me and are genuine people. No facade or pretence. That is really important to me.

The main problem I felt when we moved I to this adapted house was moving away from them. We are still in the same city, but it feels so far when I can't drive or get out by myself.

The third friendship I have with someone that I can talk to was made almost instantly. When I started going to the day centre I felt like it was my first day at school, or in a new job. I was so so nervous. Then, to make things worse I crashed into someone else there who also uses a wheelchair whilst trying to get out of the way of someone else. Not a serious crash, but enough. I instantly apologised, saying I was always in the way and he said the same thing. That was that. We started chatting and haven't stopped. My family all meet up with him and his PA once a week as well as the day centre now and all get on really well too.

I have no desires to have lots and lots of friends, I would rather only have a few close friends I know I can trust.

As adults we have to work at friendship. We have to make time for each other, check in on each other and stay in touch.

#friend #friendship #friends #trust #spoonie #spoonielife #chronicpain #chronicfatigue #chronicillness #ME #CFS #fibromyalgia #Warrior #tiredgirl #IBS #autism #anxiety #adultfriend #bestfriends #therealME #disabledparenting

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Daily frustrations and dragon's den

I have been incredibly fortunate to have been allocated some wonderfully personable, friendly, honest and knowledgeable occupational therapists so far. My first one came to visit me when I was still stuck upstairs in our old house. I was in a wooden frame double bed, in a cramped upstairs bedroom and unable to safely manage the stairs or a trip to the adjacent family bathroom. I remember the day she came first. There was her and another occupational therapist (OT) with her. They asked me lots of questions about my daily life, personal care, mobility and health. They also wanted to see how I got into and out of bed, how I was trying to manage the stairs and then see what, if anything, they could advise to help me.

By the time of that first meeting we had already purchased the walking sticks and nordic walking poles that were no longer any good, two rollators (one for outside and one for upstairs) which were barely usable any more as I was already losing the use of my legs, a bed rail, a bath bench seat and grab rails at the top of the stairs and around the front door.

My hope was that they would be able to help me manage the stairs and be more mobile again.

Physiotherapy was discussed, but I dismissed it for a few reasons:

1. I had tried physiotherapy for a previous knee injury and for a shoulder injury very recently and it had made things worse in my back and neck. There was no way I was going back again in more widespread pain and risk it getting worse again.

2. Having a diagnosis of chronic fatigue syndrome/ME, having read the research and listened to the ME show podcasts where they interview and hold discussions with specialists, I knew that the post exertional fatigue I experience would mean physiotherapy would not actually be beneficial to me.

and finally, I had been getting increasing symptoms week by week and was barely managing to function inside the house, never mind get out to any appointments that would leave me stuck in bed for days afterwards.

They did also explain that I needed to seriously consider their recommendation to move my bedroom downstairs, so that if I had a fall at least it wouldn't mean falling all the way down the stairs. I pointed out the fallout of moving our bedroom downstairs, but they recommended it for my own safety. Since I had been half jokingly suggesting it for a while we went ahead and did so. It was just as well we did because my symptoms continued to worsen and I was falling more and more frequently, determined not to give in to using a wheelchair.

I had a perching stool on medical loan, a commode on loan and a folding ramp on loan for the back door so I could be pushed outside by my husband in a wheelchair. The perching stools seem to be designed to tip you off them during use, so it made a great storage table for my toiletries. The commode felt like admitting defeat and meant I had no privacy, no dignity and was a huge low point for me. The only plus was that I could go to the toilet safely. At the time that wasn't as high on my priorities as it perhaps should have been.

We were also told that they would be recommending we move house to an adapted home where I would be able to use a wetroom and get through the doors.

That wait seemed to take forever, in reality it was only a few months, but a few months of living in one room with no family lounge is a long time.

One day I was out in the front garden supervising my girls killing the weeds and the occupational therapist happened to drive past. She stopped to come and tell me how pleased she was for us that we had been found a possible new home. Then after that we heard from the housing team that there may be a house available that was suitable.

Long story short, after a lot of hard work by my friend and my husband, we were able to move into the adapted home and I re-referred myself to occupational therapy.

They very quickly had toilet rails installed and then I had to wait a couple of weeks for my allocated occupational therapist to come out to see me here. I was so pleased to see it was the lady who had been accompanying my initial OT. This meant she knew about me already, had a good idea of what I struggled with and could compare this home to our previous situation too. She sometimes calls with a second OT and they make me smile as they try to come up with inventive ways to help me.

Questions i have asked so far have included whether there is a device or magic invention they are aware of that can press the button on the window handle and lift the handle up at the same time in order for me to have a window open here (I can't reach a single one). Is there any special handle or device they know of hat will enable me to shave my legs? (I can't bend forward enough in the shower to do it without getting shaky and lifting my legs up means i can only reach part of them and it hurts my hips and back). Since I have been told before that the garden in accessible, would one of them like to try getting down the ramp in my wheelchair?and see if they can stay in it down the steep part? or if they can get themselves back up it in a wheelchair? (all declined, but agreed the ramp is far too steep to be safe).

One visit I was joking about a toilet I used on holiday in Turkey. it was a normal toilet but with a hose at the back, controlled by a tap next to the toilet plumbing. It then washed your bottom for you. Little did i know this would lead to toilet reps calling to see us with the OT, telling us all about toilets that wash you and dry you too. Apparently they have been around for around sixty years! Why don't we all have them as standard?

I am a realist. I am aware of budget cuts, the council's need to save money everywhere they possibly can and balancing this against the needs of people must be tough. However, there is the disabled facilities grant available which could mean we could apply for a basic toilet in the range that washes and dries you. I honestly thought I was being silly even joking about it!

There is even a device that you can put your feet on and then be moved around in a sitting position from bed to chair/wheelchair. Our electric adjustable bed and electric rise and recline chair are both too low to the ground for this to fit underneath (crazy when you consider they are all designed and manufactured for people with poor mobility), but there are other options that they are going to try too. So...watch this space.

I have also requested a referral to wheelchair services to see if they will assess me for a power chair. If they would then it would mean i can get to the toilet by myself in the nightime, and back again. That would be amazing.

So, #dragonsden people, #inventors and #prototype makers, see if you can come up with a handle that is safe and can be used by someone with poor hand control to shave their legs safely in the shower please. It needs to be possible to fix and replace supermarket disposable razors to in order to keep personal care costs down, be non slip and hygienic.

Also, a window opening device would be fantastic, and a grab stick that can reach things on top of cupboards or on shelves from underneath (so with a 90 degree angle on the pole somewhere and perhaps a mirror to help with vision too).

I look forward to seeing these in the future haha.

#dragonsden #inventions #inventors #ideas #dailylivingaid #disabledaid #care #occupationaltherapy #healthcare #gadgets #wheelchairlife #spoonie #chronicillness #chronicpain #chronicfatigue #chronicfatiguesyndrome #CFS #ME #howareyou #disabledparenting #tiredgirl #mentalhealth #windowlocks #toilet #fibrowarrior