A few weeks ago I bought a mobility scooter and it’s been life-changing! Here’s a blog about what I’ve been able to do since and how it’s made my world so much bigger and better.
Although I’m feeling much better than I was, I’m still really struggling with mobility. A year ago I started using a stick but it was just as exhausting getting around. I had another attempt at applying for PIP* and got it this time, with help from Pharmacist Support . This has meant I’ve been able to afford things to make life a lot easier.
*PIP stands for Personal Independence Payment. It replaces the Disabled Living Allowance (DLA) and is for the extra costs of living with a disability, whether someone works or not. I should have had it all along really, as I wrote about in Out of site, out of mind but it’s incredibly difficult to get with a hidden illness or disability. Here’s Action for M.E.’s advice on applying for benefits, including their welfare advice line
I’ve tweeted about my exciting new scooty life, and it’s great that my chronic illness and pharmacy friends all joined in with the excitement, maybe because for most of the time they’ve been in contact with me they’ve known me as mostly housebound and know this is a really big deal to me.
I did lots of research looking at the different features a scooter would need for me, and talked to other people with M.E. that use mobility aids. I wanted to take it on public transport and in the boot of taxis and friends’ cars, so I decided a compact, folding one would be best, with good ground clearance so that I could go on paths rather than just pavements.
I decided on the one pictured left but I’ve removed the arms and I have the steering column (or tiller) tilted back towards me, with the handlebars just above my knees so that my arms don’t get tired holding them up. The only drawback is that it’s really heavy but there’s usually someone around to help me if I need to lift it onto the bus or train. I’ve driven it onto the bus once but found manoeuvring it once inside was a pain, so I take it on folded and it can be wheeled like a suitcase. It even comes with its own suitcase for going abroad!
Venturing out for the first time on the bus, just to a hospital appointment, it was a bit of a shock and a totally new thing having strangers offering to help me with all sorts of things. Even with my stick as a visible sign of my disability I didn’t get as many offers of help. I don’t find it at all patronising; I’ve read blogs by wheelchair users who do but coming at it from having had a hidden disability on and off all these years, battling through everything with little support, I find it really refreshing! Even if I decline the help I thank them for offering. It restores my faith in humanity and makes me feel included. The person helping also gets a warm and fuzzy feeling too, so what’s wrong with that? How about if we all just treat everyone as if they need help, you know, kindness? The world would be a much better place!
Going out of the house even just to the local shops is a big trip, and I have to carefully plan distances and whether I can manage them, whether there are places to sit and have a rest often enough, and making sure I don’t wastefully have to go back on myself to avoid more pain and exhaustion later. Even going to Shipley, quite a dull, uncool place, was good on my scooter! Instead of only going to one shop and making the trip as short as possible, I enjoyed not having to think about where the next seat is and pootled round the market and some shops.
Another very normal thing to do: going out somewhere and thinking, “oh, while I’m in town I’ll just have a quick look in the Fat Face sale”! Without my scooter, just the trip to hospital meant I was spending the whole time I was there recovering, just to turn round and come home, and it be one of my two trips out of the house for the week because I’d be recovering for the next few days. It was rather mind-blowing to realise what I was doing, and safely, with no payback later because I was using the energy I was spending on hobbling about actually just enjoying what I was doing.
For me, going to Yeadon Tarn and going all the way round it was probably like going to Australia is for a healthy person!
In the few weeks I’ve had my scooter I’ve managed to get out somewhere nearly every day, even if it’s just to go round the local park to see some nature and have been to a small festival just for a couple of hours to see my friends play in their band, Bassa Bassa . I also went to see the UK premiere of Unrest, an award-winning documentary about M.E., in Sheffield with a long-time Twitter friend, more on that here . I’ve also been to Newcastle for the day to go to a mini conference!
I couldn’t have done all these things without my scooter and it’s made such a difference to be able to socialise and get out into my local community instead of being so isolated at home in the very tiny world that M.E. leaves us with. I think I’d taught myself not to even think about what I’d like to do or where I’d like to go anymore, as a way of coming to accept that I’m so limited. I’d learnt to appreciate the smaller things in life, but the world is suddenly so much bigger. Now I need to do some unaccepting the situation and get out and do things again!
One or two people have seemed sad that I’m using a scooter now. I bumped into a pharmacist I used to work with and I found myself having to explain that it’s a good thing. The reason I haven’t bumped into him for a long time is because I’ve been at home mostly, not just because we haven’t accidentally been at the same place at the same time. The fact that I’m on my scooter means I’m getting out again and I’m so much happier. Please don’t be sad; it’s awesome!
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A Prescription for M.E. 
Bravo Emily! Good for you! I just got an electric wheelchair this week. The first time I sat in it and drove it in the medical supply store, I burst out in tears. It was such a feeling of freedom and relief that I had finally taken an action that would give me back some independence.
Cheers!
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Thanks, Jule! Yes that feeling of freedom and independence after being so restricted is amazing! Here’s to lots of getting out and about for both of us…cheers!
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