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 :)

Spirit Animals

My eldest daughter, G, is a free spirit. She has what they now call 'high functioning autism' and was known previously as 'Asperger syndrome'. It is a part of the autistic spectrum associated with high intelligence and not visible to the outside world.

She is a beautiful (I still think of be-a-youtiful from the Jim Carrey movie) young girl and sees the world through such different eyes to me that she amazes me every single day.

Her childhood to date has been extremely tough with many challenges that noone should ever have to face, never mind a child, but we are trying to get her through day by day.

One of her strengths is her imagination. She has a wonderful, liberated imagination that seeps from one worldly dimension seamlessly to the next. She often confuses which is reality and has gone for periods of her life determined she is one creature or another according to her currently inhabited dimension. This is her coping mechanism so we don't knock it.

She has an affinity with animals (as do we all as a family, and many people on the autistic spectrum and with many different disabilities too). Her spirit animal is most definitely a wolf and this giver her courage, a family pack mentality and the knowledge that she will be protected and loved by us all without question plus she is tough, courageous and loyal. Many of her stories are based on wolves and their adventures. She often combines these with the elements and has her own ideas on how the universe was created.

So, with her in mind, and a TV programme I had watched out of boredom and the need to switch my brain off (I call it brain off TV- where you can just listen, look up occasionally and not have to think about what you watch) I decided to look into what my own spirit animal may be.

I thought I would use the internet, so searched online for 'What is my spirit animal?' then clicked on the first three links that came up, plus one from the fourth page of results.

I am naturally healthily sceptical so didn't expect more than a bit of fun and entertainment from this exercise, but was still surprised by my results. I answered a handful of questions based on my personality and morals for each site, careful not to input any personal information and came up with the following:

1. The Deer - highly sensitive, strong intuition, deal with challenges with grace, determined but gentle.

2.The Whale - strong inner voice, follow your own truth, in touch with reality, don't get involved in drama, strong bonds and emotional ties with those I love.

3. The Canine - social, loyal, highly intelligent.

4. The Snake - approaching life in a unique way, improvise, sixth sense reading people's intentions, approaching danger. Can be misunderstood, charming, spiritual.

My first reaction was surprise at how different these animals are to one another, but then I stopped to think about my life and my roles.

The constant watching for dangers and triggers for meltdowns from my children would fit with the vigilant and intuitive deer.

My aversion to drama, small but tight circles of family and friends along with my own strong reality based views on life fits with the whale.

My obvious intelligence (haha!) and loyalty to my tight knit circles fits with the canine group, and my unique way of approaching life with all the dangers I have encountered along the way fits with the snake.

I am often misunderstood and often have to improvise to get through the day (not so sure about being charming though....I associate that with negativity and a false persona).

Don't get me wrong - or misunderstand me!- I won't be endorsing any of these websites or quizzes available online any time soon, but can see where the very different question styles and seemingly varied results pointed towards different parts of my role and personality.

The documentary/reality TV show I watched was of a woman who was trying various therapies, one of which was to see a Shaman and try to meet her spirit guide. I would love to take my daughter to do this when she is older as I can see she would get a lot from it and finding other people who are as spiritual as she is would boost her self esteem and confidence no end. For the time being I think it would confuse her and possibly even scare her with the rituals and drumming....one to park for later in life for her.

The Spread

Middle aged spread

Spare tyres

Love handles

Blubber

All names I have heard used for the weight gain that is almost inevitable with this cocktail of medications and inability to exercise.

I have never been what you may call 'large' and have always been very active. I was a single Mum for years and before that may as well have been, so living on a tight budget was never conducive to owning a car. As such, the usual phrases that people get told by their GP when they first approach them about their health concerns were null and void "Your pain/fatigue/other symptom is being caused by your weight. Lose some weight and then if it persists come back and see me". I also never smoked much (except for the few as a teenager, and my IBS (irritable bowel syndrome) means I could never tolerate much alcohol on nights when I had a babysitter). Despite this it has still taken me 19 years to be diagnosed with chronic fatigue syndrome and fibromyalgia, and 16 years to be diagnosed with adenomyosis and polycystic ovaries. I have been diagnosed twice with IBS.

Despite their usual phrases being out of commission for me, I have found that they instead blame everything on the one diagnosis rather than investigating further- hence the long wait for further diagnoses to date and these still do not account for all of my symptoms. For example, I started experiencing increased pain levels, to the point I was doubled over and unable to move until the pain passed. This was happening with random timing and activities, always in the same place on my body and with increasing repercussions on my daily life as a single mum. Imagine having to get two young children ready for school in the morning alone, both of whom have undiagnosed autism, then having over a mile to walk to the school regardless of the weather, before having to walk the same distance home once gain. It was a daily battle to get my son there alive with his lack of danger awareness and reluctance to get to school. Add into this mixture the unpredictable pains I was having and perhaps you can see what led me to my GP surgery. I explained everything I was experiencing, had an abdominal examination and was told it was my IBS. I knew this wasn't the case so returned to my GP surgery to see a different GP. They tole me the same, but this time I insisted I be referred to the specialists at the hospital. I had been through this before and knew it wasn't being caused by IBS. I know my triggers and have done since I was a teenager. I also knew they would want a food diary to track any possible triggers. I had a long wait for my appointment so underwent private food allergy blood testing in the mean time, as Dr Google had suggested food allergies as a culprit for the pains and my daughter (G) had already developed a few food issues. I discovered that I actually had become intolerant and allergic to several food groups and that once these were eliminated from my diet the pain linked with this area of my body eased substantially, but didn't go away. I felt less bloated than I had been but was still concerned so returned to my GP once again. I was referred to see a gynaecologist. Then I became the centre of a pass the parcel between gastroenterology and gynaecology. Neither specialty wanted to investigate and kept referring me to the other. It was very frustrating as it meant repeated trips to the hospital, wasted time and I was still in pain. By this time I had started dating and things were going exceptionally well despite my health issues. I found a private clinic online and we went there for me to have an internal scan which showed I had polycystic ovaries. I took this back to the NHS gynaecologist who insisted on doing further investigations and found I also have adenomyosis. I feel as if everytime I have been to see a doctor with pains they have found another illness that I just happen to have alongside whatever is causing the main symptoms I have to cope with every day.

Polycystic ovary syndrome (PCOS) is known for causing many wonderful side effects and symptoms, amongst which are facial hair and weight gain. I also have Gilbert's syndrome which the medical profession diagnose but do not recognise as having symptoms beyond jaundice. It means I need to be careful with medications though and when I am stressed my eyes and gums turn yellow (which in itself doesn't particularly help any stress levels at the time).

I am also on medications that have weight gain as a side effect as well as being in the position now where I need to use a wheelchair to get around.

All of the above together seems to be conspiring against me when it comes to maintaining the size I had last year.

As soon as my mobility became difficult I knew that some weight gain would inevitably follow, and wanted to try and remain as active as physically and mentally possible. I planned on going swimming when I could to minimise the strain on my joints and use the buoyancy of the water to aid my efforts, but the reality of doing this has meant I haven't made it there yet.

When I look at other people who are disabled, or other wheelchair users, even at services for the disabled and wheelchair users, I feel there is nothing that I could access. I am not in a wheelchair because my body cannot physically function at all in any area. I am not in a wheelchair and able to self-propel myself sufficiently to do more than get around a level indoor space for a very short amount of time. Therefore the amazing array of wheelchair sports is not applicable to me. I don't have the strength or stamina to use either my arms or my legs. I can barely hold my own head up long enough to get through a movie, let alone concentrate long enough for a game. I am seriously struggling to find any exercise or social club that would suit me.

Ironically there is a local ME/CFS group that meets now and then but I was too ill to leave the house on the day of their last meet.

This is the problem I have here. Not only am I in a wheelchair, but also I have two chronic illnesses that are unpredictable and flare up randomly, leaving me unable to leave my bed. I also have three children with autism who need to know what is happening and when. Plans cannot easily be changed last minute. Balancing all of this, plus the added stresses we have makes life difficult and interesting. To go out I have to be sure the place is accessible and has a disabled toilet, be able to know it won't be too busy, too loud or too bright, be able to describe it to my children (particularly my youngest A), have an idea of what is there to be able to entice my children to leave the house and get there at all and check any other sensory issues they may face there (such as cooking smells, textures, noises or sounds). This is before we consider leaving the house.

Inevitably I have started to gain weight. I severely dislike having any additional weight on and find it is particularly noticeable with the clothing I need to wear in order to use the commode. I cannot manage to hold myself up with my legs and arm tremoring, and undo or do up buttons and zips so am in unflattering leggings and vest tops with hoodies so I can get away without needing someone to do up a bra for me. There is no hiding a belly in leggings.

I purchased a small pedal machine, but with the CFS and fibromyalgia causing post exertional malaise (PEM) (basically means being exhausted and in pain for some time after doing anything), the pedalling for a short time left me in pain for days afterwards. I have now replaced it with this:

It pedals itself, therefore is a passive exerciser. I saw some expensive versions recently and decided to take a look online for more affordable alternatives. So far so good. I have been able to cycle for ten minutes a day thus far without any ill effects. I do need to recline slightly in order to take pressure and pain away from my lower back, but have not had any PEM issues.

I plan to combine this ten minutes a day with the supine yoga I have been doing on good days for the last four months and try to atleast work off some of the calories I intake daily. It has to be better than not doing it I guess.

I have been thinking about what possible exercises there could be for people in my position, and other than swimming I cannot think of anything. The unpredictable nature of these disabilities means signing up to a weekly class is pointless, joining any team wouldn't be fair and any exercise that puts a strain on any muscles at all is no good. What does this leave?

So when a doctor tells you to exercise when you have fibromyalgia and ME/CFS, please ask them the question- what exercise do they suggest? and where?

Nice guidelines are currently being rewritten because their treatment suggestion for CFS/ME is graded exercise therapy (GET) and cognitive behavioural therapy (CBT) and it has been recognised that these often make people worse, not better. If you really think about the symptoms and issues faced by a person suffering with these disabilities and the treatment suggested it stands to reason that this would be the outcome. Yet the professionals are still recommending this as a solution. Roll on the end of 2020 when hopefully the Nice guidelines will have been updated and improved for us.

In the mean time I will continue with my passive exercise and supine yoga and hope for cures to be found.