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

Wheelchair travel abroad

My first time flying as a wheelchair user has gone pretty smoothly up until this point (so far so good).

I am sat in my seat on the plane to Turkey, ears popping continuously for the time being, one child either side of me and my husband is sat with Miss G across the aisle.

We have around a 4 hour flight and then a private transfer arranged to get us from the airport to our hotel.

Travelling through the airport with three children with autism has worried me hugely, let alone the added issues of needing a wheelchair. Recently there seems to have been a lot of publicity around lanyards with flowers on that are supposed to be a magic key almost for people who need extra assistance at an airport. Despite this I know we will all have to queue at some point, all have to go through security and all have to get on a plane when told to and sit where we are told to. And stay on the plane.

We arranged for special assistance when we made our holiday booking, printed out the airports guide for children with autism and watched their video guide online too. We answered questions, allayed fears, and made things as easy for them as we could by suggesting simple clothing and shoes, getting them a new carry on backpack each and leaving plenty of time for their bags to be checked through at home.

When we got to the airport we left our car at valet parking and made our way into the terminal building to find the special assistance desk. A man from there (not wearing the yellow jacket it mentions in the guide) took us to check in, where a lovely, friendly lady weighed our cases, put labels on our suitcases and on my wheelchair, and wished us a good holiday. We then returned to special assistance where two ladies (one in a yellow jacket but one in an orange one) took us through fast track security, bypassed the duty free smelly and bright shopping and showed us where to be when the gate opened forty minutes before our flight time.

The paperwork for the children, and the video guide covered the security procedure clearly for the children. Other than a few nerves about walking through the security arch, it all went smoothly. I had to wait and be patted down by a female worker, but I had expected that. She swabbed my hands and some other people had to remove their shoes. The workers there were all very friendly and helpful and made it as stress free as possible.

Once through into the departure lounge, the search for allergy friendly food and drinks began. We managed to locate fruit and vegetable pots, crisps and drinks in one shop then salads and a coconut yoghurt in a second. Not too bad for us. Miss A even had some soup (which we then carried around for the rest fo the time in said area until we had to get on the plane).

We ate our food, picked up some magazines and found the sensory play area for the children where they could also watch the planes out on the tarmac.

I had booked for Miss A to have a mini manicure at the departure lounge, something for her to look forward to. She set her heart on a light blue colour and they thankfully had just the right shade there. Phew. She did incredibly well sitting still for her manicure whilst the lady chatted to her about her flight and holiday. She has wanted a manicure for a long time but I have been unable to find anywhere that will see a child.

It was then time for us to be taken to the plane. Two special assistance staff appeared and took us through the queues to the plane. I was amazed at how many people there were who didn't move when asked to by the worker. I was glad I had the second worker pushing me so no blame for any bumps or bruises lay with my family.

It turned out there was another lady with a wheelchair on our flight too. We were all taken out to the plane and waited for the baggage truck to move for the ambulift to be able to load us on. The rest of my family climbed the usual stairs to board, whilst we waited. It all went very smoothly with no hassle. I was asked if I could walk to my seat once on board, and embarrassingly said no. It was alright though. They had an aisle wheelchair which I transferred onto and was wheeled to my seat in, with everyone along the way gawping. I didn't care though. I had made it onto the plane to my waiting family.

The flight itself was as smooth as the departure had been. We had already agreed we were going to eat our snacks and buy drinks on the plane, but then someone said they had a nut allergy half way through the food service (seemed odd to me) so we were all asked not to eat anything with nuts in whilst on board. Do I be that one who caused someone to have a reaction? Of course not. With all our allergies and intolerances I know what a nightmare it can be. But also I know if they had a nut allergy I would have told cabin crew when boarding the flight, not when the food trolley had already served half the aircraft. Still, that was that.

The 'are we nearly there yet?' got really really tired after an hour of the flight. I tried encouraging Miss A to watch one of her downloaded films or programmes, listen to music, colour her magic colouring book, sleep, draw, read her new magazine..... Nope. Nothing I suggested was an option until she decided it for herself (PDA to a tee). It felt like a very long flight.

My seat was meant to be by the window so others in my row would be able to get out to use the toilet. Mr J wouldn't move when I boarded though so I was sat in the middle of the three seats. This meant he had to literally camber over me to get to and from the toilet. Great. Plus he took great joy in leaning forward, thereby blocking the entire window with his head. This constantly annoyed Miss A.

When we got to the airport in Turkey, I was last to leave the plane as I waited in my seat for the staff to come and help me get down the aisle in an aisle chair. Two men appeared to do this for me, taking me directly to my waiting wheelchair. Then through the passport checks (where the maze of ribbon barrier and posts were moved away for me) and out to our private transfer.

The driver drove so carefully and slowly, dodging every pot hole, bump and crawling over speed bumps to avoid any pains. I was glad of this but also wanted to get to the hotel.

As a side note, we were on a three lane road, the equivalent of an A road in the UK, and there were children rollerblading down the hard shoulder incredibly fast, heading directly for a pulled over lorry. Then a car passed us with a lady sat in the front passenger seat holding a toddler on her lap. They think nothing of a family of 5 getting in an average taxi. The safety standards on the roads here are very very lax compared to at home.

Since arriving here in Turkey, nothing has been too much trouble for anyone local. I have noticed that people talk to me rather than to the person pushing me here. They have a lot of respect for my husband, having seen him getting me drinks and plates of food, and I have to only look at something for someone to appear from nowhere to get it for me.

I have been lifted in my chair to get up steps, slowed down on downward slopes to the beach and had people make me drinks without me asking the chefs have pushed me through the dining hall for me to select food and waiters have moved chairs, fetched food and drinks, all without me asking. In fact, often with me saying I am OK.

We ventured into a local bazaar yesterday. I had researched it before getting here. I knew where and when it was, how long it would take to walk or drive and what the streets were like. So I was fully expecting the narrow cobbled streets, the hundreds of local stalls selling their home made wears from food to shawls, lemonade to jewellery. Whilst I am saddened by my food sensitivities, I think in this case it is a benefit to me because I loved baclava. The crunchiness combined with the sweet honey... Yummy. But now I have to stick to dipping fruit in honey instead. I don't know how my husband has resisted the baclava here.

Our taxi to the bazaar arrived and the driver put two seats down at the back for the wheelchair, waited patiently for us to all get in, then loaded the wheelchair for us. The same happened when we arrived five minutes later, and on our return journey too. Here it feels as though they just see a wheelchair as an extension of the person who they will help however they can. They don't seem to view it as a problem or an added difficulty that needs fixing.

The bazaar is a local market for local people on the whole. It isn't the typical tourist market where men try to sell you jewellery and leather whilst plying you with apple tea. We found mainly women on the stalls, selling home made goods. We found lots of hand made jewellery stalls and a lady who crocheted clothes and toys. This was the ideal opportunity to pick up gifts for those back at home.

A quick wander around the town after the bazaar saw us at a marina and buying candyfloss for the children before catching a taxi back to the hotel, laden with gifts and goodies.

Our best find was the cafe where the owner spoke pretty good English. He really made the effort to make us all feel welcome, especially the children. He even explained ayran to me when I asked, chatted about where we are from and moved furniture around for the wheelchair to get in without us even asking or trying.

It was so hot down in the bazaar that the cool outdoor pools of the hotel were calling our names as we sat down for a quick light lunch before answering their calls with a splash and a sunbathe.

I have mastered the art of getting into the pool from my wheelchair and back again now. It isn't my usual wheelchair though and I have removed the footplates to make it easier to turn around and manouvure in general, but I can do it. I have hurt my back, shoulders and left arm doing this all week but there is no way I was just going to sit there and not get into the pool.

It is our last evening here now, we are being picked up tea time tomorrow for our journey home again, and I feel sad. Sad because of the weather changes and how beautiful it is here, but mostly because I know I am going back to living in one room again and being spoken over instead of spoken to.