Post Twenty One. The Wheelchair Has Arrived.

So, the much anticipated wheelchair has arrived!

It was delivered mid-November by a very nice engineer who unpacked and put it together for me, and he gave me some basic instructions, how to use the joystick, how to charge the batteries, how to fold and unfold it etc. He also made me sit in it. This was the very first time in my life that I have sat in a wheelchair, and I was pleased to find that it wasn’t as scary as I had imagined, it didn’t feel wrong, weird, or foreign. It actually felt fine, and for a travel wheelchair, it was surprisingly comfortable.

There was however a downside. I learned that despite it being the lightest electric wheelchair in the world, it is too heavy for me to lift. This means I am unable to fold and unfold it myself. It’s around 20kg, I could easily lift 20kg before I had ME, but I guess I hadn’t quite realised just how weak I had become, or maybe I was in denial. I have tried to practice folding and unfolding it, and if I really force myself, on my ‘better’ days, I can just about manage, but only by severely over-exerting myself. So this was a huge blow, and I did feel disappointed. It means that the wheelchair won’t provide me with quite the level of independence I had hoped for, given I will be relying on others to lift, fold and/or unfold it for me. But, there’s nothing to be done about that, a lighter model does not exist, so there’s no point crying over it. The wheelchair will still provide me with the opportunity to get outdoors a bit more, and to bits of the world that have, since I’ve been ill, been inaccessible to me, and that is what matters.

It took a while before I felt well enough to get outside for a test drive thanks to a nine day migraine and being generally very unwell recently. So my first outing was around ten days ago, I went to a park near my mum’s house.  These are some things that I learned…

Going downhill is scary.

Going uphill is just about manageable, but uses a lot of battery power.

Smooth surfaces are a joy.

Bumpy/uneven surfaces are less good.

Grass is an absolute no no.

Pavements with a camber, that slope down towards the road are not good. Not unlike a shopping trolley the wheelchair kept veering to the side, towards the road. I learned that by almost flying onto the road. Luckily my quick reactions stopped me from potentially being flattened by a massive lorry.

I did feel nervous about passing any pedestrians, thankfully the only people I saw smiled at me. But it is a small friendly town, so they probably also would have smiled had I been walking. At least I hope so, I don’t want ‘pity’ smiles.

What surprised me was just how exhausted I felt afterwards. I was only out for half an hour, but I was shattered and the payback was pretty severe. It took a week before I felt well enough to have another practice.

The second practice was a few days ago…

I began in my mum’s garden, testing how it handles on a light dusting of snow. The makers of the wheelchair do advise that it should never be used on snowy or icy surfaces, but on the smooth paving slabs in my mum’s garden, with a little amount of snow, it managed fine.

It does not like gravel, it stubbornly refused to move while the spinning wheels dug holes in the ground.

I was reminded that it really does not like bumpy surfaces. The pavement in front of my mum’s house, I had thought, counted as a smooth surface. I suppose I never paid much attention when I was on foot. But the wheelchair did not like it at all. Again, it wanted to veer off onto the road. I had to take it incredibly slowly, and I really felt like I was pushing the wheelchair out of it’s comfort zone. It was also really uncomfortable for me, as my skeleton got a good shoogle, as I bumped along the uneven pavement. It struggled even more as the pavement turned an uphill corner. I ended up having to get out of the wheelchair, switch it into manual mode and push it round the corner and up the first section of the hill. Realising that going up this hill, with it’s very bumpy pavement, with a coating of snow was not going to happen, I went down into the grounds of a nearby hotel instead. Again the surfaces here were really uneven and pot-holey, I had to give up pretty quickly, and pushed the wheelchair back to my mum’s house, it was hard on my arm muscles, but it gave me something to lean on, like an incredibly expensive zimmer frame.

So that’s been my wheelchair experience so far. The first outing was definitely a success. Whizzing along the paths in the park and ending up next to the river was wonderful. Without a doubt I was able to travel further than my legs would have safely carried me. The second outing was disappointing, and I felt quite low afterwards. But I did learn something, it was educational, so therefore still useful.

My health has been really poor recently, especially with my marathon migraine. I’ve also had some emotionally draining situations to cope/deal with, completely unrelated to the wheelchair, but this too takes a huge toll on my ME symptoms. It has been a source of anxiety for me that I haven’t been able to practice with the wheelchair as frequently as I would like. Understandably I have lots of people asking me how I’m getting on with the wheelchair. And I have to respond, to the people who paid for it, that so far I’ve only had one, or two outings in it. This leaves me with a lot of guilt. That I’m letting these people down, and not giving them their ‘money’s worth’. On my second outing I began to panic and thought I would need to offer everyone a refund. My mum reassured me that the people who made contributions to my wheelchair fund did so for me, not for themselves, or their viewing pleasure. I do still wish I was able to use it more frequently, but like always, my illness dictates everything.

I think this is a good time to remind people, and myself, of something. Having the wheelchair has not cured my ME, it has not given me a new body, and I do not suddenly have more energy. It will allow me to go outdoors more frequently. But these outings will take place on the days that my mum would have otherwise visited me. So I’ll be doing pretty much the same amount of activity, in term of duration, but now, some of that activity will be able to be outdoors, rather than in my home. That, is how this wheelchair will change my life. I also have to accept that I’ll get less use of it during the winter, while it did manage ok in my mum’s garden on a small dusting of snow, I do know better than to experiment with it in deep snow, or on a sheet of ice. I will also be limited to using it on smooth pavements and paths, and it’s only now that I realise how uneven many of the pavements are in this town.

Each outing in the wheelchair for the next few months will, I imagine, be a learning curve. But even finding out what it doesn’t manage, will be useful information to have. I also need to stop looking at the difference it will make through the eyes of a healthy, able bodied person. When I do, it makes me think I’m not using it enough. But actually, the difference it will make to my life, however small it might look to someone else, will be worthwhile, and will without a doubt improve my quality of life.

Thank you again everyone who made this possible. x

 

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Post Eighteen. Crowdfunding My Wheelchair.

You may have read my previous posts about my indecision regarding buying a wheelchair…

Post Sixteen. Wheelchair Or Not?

Post Sixteen Continued… Wheelchair Or Not. An Afterword.

Well, I have decided to go for it and have given myself 30 days to raise the £2795 I need via JustGiving Crowdfunding.

This a huge, emotional and scary leap for me. But one of the things that helped me come to this decision, were the many kind and supportive comments and messages that I received in response to the above posts, it was really very encouraging and I thank you all very much for taking the time and energy to contact me. I still feel nervous about this, in fact I’m downright terrified. But I’m also a little bit excited, I very much hope that this decision will lead to a better quality of life.

If you would like to contribute to my wheelchair please follow the link to my crowdfunding page below. All contributions will be very much appreciated. And please feel free to share my crowdfunding page, if you wish to. Thank you so much, Phoebe.

www.justgiving.com/crowdfunding/phoebeselectricwheelchair

 

My future wheelchair!