Transport woes part… (I’ve lost count)

Despite being back on track with my writing now, generally I have found it difficult to write this year, unless something particularly grabs me. This is one of those posts. (N.B. I wrote the remainder of this post roughly six weeks ago, but facing Hospital Transport tomorrow, this post is pertinent!).

Old worries revisited

I have many things in common with fellow disabled people regardless of disability type or severity. Difficulties finding, and keeping affordable transport are almost universal. I’ve barely been out of the house recently, either because of myriad problems with my electric wheelchair, difficulties with care or a health related problem.
This morning, however, I had an unavoidable blood test. I have to use transport to get there so I can have the finger-prick test much like a diabetic person would do to check their blood sugar levels rather than a regular blood test. I am often told children have bigger veins than I do.
This morning was different, because instead of the usual transport vehicle it was a taxi contracted to do the same journey on their behalf. Rude, impatient and uncommunicative and on their hands free phone for the majority of the journey, I was apprehensive about being dropped off at the conclusion of the journey. I should say as far as I can tell my wheelchair was tied down properly.

Unexpected Intervention

Not expecting any further help, I slowly pushed my wheelchair towards the dropped kerb. Unexpectedly, someone in the next car addressed the driver, asking if he was on NHS work all day or just the one job. He said ‘just her.’ The driver then said he should really help me get inside so the taxi driver motioned towards me as I inched toward the pavement. I swear my garden snails would beat me. The other driver swiftly said “it’s just we’ve been warned, you know…” Tada, my driver’s attitude transformed. He propelled the chair at speed towards the building and asked civilly where I would like to be, saying thanks as he did so. I think it was for keeping quiet in front of the person who reprimanded him. Job done, he left.
After my blood test, I plucked up the courage to complain. I wouldn’t usually, but I felt I had to this time because I wanted to make sure the same driver wasn’t taking me home. I was concerned others would be at risk if faced with this same driver too, in terms of their emotional well-being if nothing else, or more, if they didn’t get the necessary help either.
Imagine my relief when an ambulance technician I had seen before rocked up. I knew everything would be fine after that.

A timely reminder…

This morning reminded me of an important lesson though. God doesn’t always answer our prayers in the way we expect. I suspect you are wondering how transport and prayer are related? You see, this morning I was in such pain I was almost in tears. I’d prayed God would lessen the pain as I knew I had potholes and speed bumps to endure on my journey, and asked a couple of others to pray too. Being driven by taxi meant being driven straight there rather than all over my side of Leeds to collect others, ensuring a shorter, smoother journey, despite the unpleasantness. Thankfully, on the journey home I’m first to be dropped off. What a relief,  answered prayer, and an important lesson remembered.

The one with the ‘curlywurly’

An ordinary start, to an ordinary week!

Given the exertions of the previous week, a restful week this week would have been the sensible thing! Not a chance… It was such a long week that I can barely remember Monday. The two or perhaps three staff that are about to leave haven’t yet left, and still they needed to send a carer from another area to cover the respite sit/PA time. Fortunately, this one was lovely and allowed me the same flexibility I have with my regular carers. I bought my usual shopping including said ‘curlywurly’ (chocolate covered toffee in a curly shape, in case it’s not available in the US!)

I got to go horse-riding on Tuesday, which I love as it gives me so much freedom. It’s time out of my chair, it gets me off my estate where I live, and because the horse is so tall, I have an amazing view of the countryside. For the moment the benefit of horse-riding out-weights the horribleness of the pain I am in, and helps with aches and pains because of the movement of the horse. I have a special saddle, which means I mostly sit ram-rod straight, which is good for my posture. I also have great banter with the people who help me. So far so good, until lunchtime.

The ‘curlywurly’ moment

Tuesday was day two of the D-I-E-T. I decided after the trauma of Sunday that I needed to lose weight to help with the back pain and needed a sweet treat fairly low in calories, and that didn’t feel like a ‘diet chocolate bar. Sounds great. Unfortunately, in went the curlywurly, out came the filling, leaving me with a such a large space in my tooth that I kept hitting it with the tip of my tongue. Fortunately, I manged to get an appt to fix it temporarily within only a few days, which is a bit of a rarity in this country. Before all that, I had to get home. More of that in a previous post, as it’s part of a bit of a saga


By this point I was shattered so had completely forgotten about a appointment. My new OT arrived to do a sort of mind-mapping thing of where my head was at this point… great timing. We decided to focus on what my ‘roles’ were… so I am a daughter, sister, friend, listener… to carers as well as friends. It was so helpful to do that. The OT words were that it helps to ‘validate’ things I do manage to do, and where I want my priorities to be. As it turned out, the things I like doing and want to spend my energy on were on the left hand side of the page, and the things I end up spending my energy on were on the right hand side of the page. Things like appointment, being a service user (of several services) and all that entails, and trying to ‘people manage’, which I have ended up doing all of as I don’t yet have a ‘Joint care manager’, after more than four months of NHS funding. My OT told me that after some investigations, my file has disappeared into the either… welcome to my world dear readers, par for the course for me, however pessimistic it sounds. If you aren’t currently working due to being ill/sick and/or disabled, I’d recommend mapping out what your various roles are because it will help to see what you do manage to do and work out what else you might manage to do or to refocus where you are spending your energy. I spent the rest of Tuesday recovering from it all!

A new hobby

On Wednesday, I tried and failed to find a recipe to cook and freeze and decided to make bread instead. This means with me mostly directing, and the carer mostly doing. Somehow I ended up with more flour on me than the carer did! According to the carer, the bread looked like ‘sick’! However, it smelled like bread as it was cooking and tasted like bread when it was out of the oven… result! Odd, that I felt I’d accomplished something new when my carer did most of the handiwork! I’m definitely making it again as it is so much nicer that shop-bought bread and easy to do.

Me, the Social Flutterby

Thursday arrived, and I had a busy day planned, but fortunately this was a Good Day. Lots of banter with the morning carer, which as I explained before makes a big difference. I had a chance to rest, followed by an appointment to update my care plan. Just after this I got a welcome surprise visit from two lovely ladies who are volunteers with the local social enterprise who teach me to horse-ride. We had a great time catching up and there were lots of laughs. They worried about tiring me out, which happens very easily, however,I had time to rest before I went to a well know eatery with the bread-making carer and a dear friend. I left the carer and went to the nearby cinema with my friend to watch the film “Brave” the new Disney/Pixar animation. Caution: skip this part if you’re planning to see the film as this next part contains spoilers. I’d heard nothing about it before I watched it, but quickly realised most of the stronger characters were female. It’s basically about a mother/daughter relationship, and about being careful what you wish for! The moral in the tale is about finding your destiny within yourself rather than from a fate (or higher being?) which I don’t agree with, but I liked film and how it had strong female role models. All the Scottish accents kept me amused thought the film, and being Scottish myself meant I picked up on more of the jokes than my friend. Or, maybe I just have an odd sense of humour. I’d highly recommend Rachael Held-Evans Review of the film, which you can read here. After all of this, it’s hardly surprising I fell asleep in my wheelchair in the early evening.

Friday morning started uneventfully, and I got ready to go and meet my friend. It was fine, until I tried to leave. It being Friday lunchtime it was difficult to get a taxi. I tried to get my manual wheelchair to my carers car, but realised the wheelchair was completely busted. I ended up deciding to put my walking frame in my carers car and wing it. It’s crazy that I had to walk and put myself at so much risk when I have an electric wheelchair, and can’t get a taxi. I had a enjoyable catch up with a dear friend over a pub lunch, but an still suffering the consequences of trying to walk, even though I only crossed the shopping centre, street, and square, and back again. My feet are red raw, I’m exhausted and in so much pain. I really have to get the transport situation sorted. The rest of the day was a bit of a struggle due to medical issues and fatigue. I just completely crashed when I got home.

Drama, Drama, Drama

I’d hoped the drama would stop today but I started the day with a broken washing machine. These things are part of running a household but I have a smaller washing machine because the kitchen units are lower than normal. Absolute pain as I wasn’t informed of this when the kitchen was designed. However, I’ve made things worse as I didn’t fill in the guarantee. Off to start sorting it out so I can party later!