40 Before 40 – Use My Manual Everyday for 40 Days

At the end of 2021 I turn 40. So at the end of last year I wrote a 40 before 40 list (it’s not on this blog before anyone goes looking).

I always thought that with the number of trips away it would involve I wouldn’t manage all 40 tasks. But that it was good to have aims and I could probably manage a fair number. With the current restrictions I definitely won’t manage most of them because even the one day trips are out of reach.

I might write a new “pandemic edition” 40 before 40 list to start after I turn 39, I need to have a think about it. But there are still several I can reach from the original list. And I recently completed one.

Use my manual chair everyday for 40 days.

It’s actually well over 40 days. I’ve used it most days since it was serviced right at the beginning of August. And I’ve used it everyday since 19th August when my powerchair went in to the workshop.

My mum had been moaning at me for ages that I needed to start using the manual more. But it turns out what I really needed to make me do it was the powerchair tech pointing out that the reason things like casters keep wearing out is because of all the tight turns and small movements around my flat which it isn’t really designed for. That and yet another repair bill of over a grand for the powerchair.

I’ve been in it for every morning care call since the 20th August, even asking carers to wait and minute or two for me to transfer out of my powerchair into it. I had yet more problems with the gas strut in the powerchair which is part of the reason it went to the workshop. And I think part of the reason I’ve had those problems is the amount of force needed to do my compression. To start with I was trying to be in the manual for all care calls but some evenings I’m back in the powerchair again now.

Some days I’ve only used the manual for an hour or so around the morning care call (which is 30 minutes). And a few days lately, when the weather has been bad, I’ve not even touched the powerchair. A week or so ago I was at home all weekend and in my manual from Friday morning until Monday afternoon.

It’s definitely getting easier. And strangely I’ve noticed my feet and legs are sitting on my footplates better the more I use it. I still don’t think getting out and about it alone will happen. But in the house definitely is.

I’ve started having some shoulder pain in the last week or so which is concerning (this is something wheelchair users need to be careful of) but as it’s mostly one arm it’s been suggested it may actually be crochet related. I’ll need to keep an eye on it.

And this is really bizarre but it’s beginning to look like my next wheelchair tech visit will need to be from the NHS wheelchair services team to give my manual some TLC. It’s a long time since I’ve seen a tech for this chair!

In which able-bodied people are weird but if I point it out I’m the weird one.

I was in my manual chair on Thursday while the powerchair was with the tech.

My morning carer said “Wow you must be strong doing that.” And I was pleased because I feel like I’ve lost so much strength and can do so little in my manual compared to years ago. But I was managing well and I liked the compliment.

An hour later the tech came and took my powerchair. Once he left the guy who was here working on my bathroom asked if there was something wrong with it. I explained that it had gone for some routine stuff. Then he said “it must be hard pushing that chair.” I just said “well it’s certainly not as quick!”

At first it amused me to have two such contrasting reactions to the same thing – both congratulatory and commiseration. But it also frustrated me. Because it’s just one form that my normal takes, albeit a different one to most people

And it makes me wonder if I should start doing the same thing to able-bodied people. My Dad and my Uncle are in my garden doing some work at the moment. If I went out there and was like “You must be really strong walking like that” or “That must hard climbing that ladder” they’d think I was really weird.

I don’t get it.

Ticking Along

Things are ticking along slowly.

For so long I struggled to read but that suddenly kicked in and now I’ve read more both in actual books and in pages read than I did in the whole of last year.

Then I was struggling to crochet or knit. Until I spent an afternoon at my parent’s house a couple of weeks ago while my flat was being painted. Mum made me stop talking about the project I wanted to do and actually make a start on it. Then the next day she asked if I’d done more and when I said no told me to do some and then send her a photo as proof. That was two weeks ago and I’ve worked on it everyday apart from one. It’s half finished and the second half will take a lot longer (done in rounds and each is larger than the last) but I’m pleased with it and it’ll get there.

I haven’t been reading as much whilst I’ve been crocheting as it kind of feels like I maybe don’t have the concentration to do both – I’m spending a lot of time online and needing it (or was until I broke my ipad yesterday) – but equally that could simply be because I picked up a book I’ve been really keen to read having loved another by the author and heard good things and it’s OK but I’m not as enamoured as I expected which is a little disappointing.

The really big thing that I want to be doing but aren’t is writing. I did write about 100 words of one of the many pieces I have in mind earlier whilst waiting for the wheelchair tech but then deleted the lot because it just felt clunky and wrong. I’ve since thought about it (whilst crocheting, I swear some of my best writing moments are when I’m nto writing) and I think I took the wrong tack. It’s not unusual for me to end up deleting a first attempt completely.

And I went back to the wheelchair clinic and they sorted my chair out. So that’s a major stress sorted out and everything else is sort of ticking along even if it’s not good.

There used to be a TV show (or maybe there still is, I never really watched it) called Modern Life is Good Ish. And that feels like (if you take the modern away) a good way to describe things right now.

Random Bullet Points of Life

Random bullet points of life are for the little things worth recording but probably not in need of an entry to themselves. I actually think several of these should have an entry to themselves but in the interest of catching up a bit and not forgetting things this will do.

+It’s so long since I wrote a blog update! Lots of thoughts about blogging lately and probably some stuff to write about it but not today.

+ My new manual wheelchair has been a bit of a disaster. I couldn’t use it at all for the first two weeks I had it as it wasn’t safe. It’s still not as safe as it ought to be and it’s horrible to use. I’m going back to clinic next week but I suspect the outcome won’t be brilliant.

+ I’ve had my Jive (powerchair) for a year now! I did 1069 miles in the first year and wore a pair of tyres out.

+ I got my chair serviced and the tyres changed and then two days later (after the tech who did the service gave me a sheet of paper on which he’s put the results of the service and written “chair working well”) I went to Reading and part way round I thought “something isn’t right.” Got home and discovered one of the castors was fucked. And panicked because it was the one that broke earlier in the year and that took forever for parts. But the tech came back straight away and it turned out it was just a bolt that had sheared.

+ I then had the tech out again a few days later because I didn’t think it felt right. I sent the company a video and they had a play with their chairs and a couple of others and looking at those and my video they thought it was fine but insisted on coming back to be sure. It was fine.

+ Having not seen my Mum’s family since my sister’s wedding in 2015 or my Dad’s family since last year I got to see both within a week. It was a lot of fun.

+ Talking of things that haven’t happened since 2015, I had a UTI. But bizarrely three days of twice daily antibiotics did the trick. I really didn’t expect that as it was a low dose short course and my history suggest I need more than that.

+ I am still not able to go sailing. Goal posts have moved on that a couple of times and whilst I agree things needed looking at for safety sake it was all badly handled. I told them that I won’t be going back this season and only may go back next season. At the moment I don’t expect to go back at all but never say never.

+ The paraathletics we went to see in London was very interesting. We saw a lot and I enjoyed it but I think I enjoy team sports more because they tend to have more of an atmosphere and I really like the atmosphere.

+ I’ve been looking into the possibility of going to watch the wheelchair tennis at Wimbledon next year but that may be tricky because you book for Wimbledon and get what you get. We can’t guarantee getting into any of the wheelchair tennis which is brilliant from an inclusion point of view but also a bit of a shame because I’m much more interested in seeing the paraathletes play than any other games.

+ I had a week off and went to Birmingham twice (to see a uni friend and go hunting for some of the art in the wild Big Sleuth trail and then to see Miss Saigon with another friend) and to Bletchley Park. I met friends there and really enjoyed it. It was a very long journey though although relatively easy. It was just a bit gutting when my friends who’ve recently moved away from Oxfordshire and are much closer now said it would take them 20 minutes to get home and it was going to take me 3 hours!


A wheelchair related thought

I’m very excited about my new wheelchair coming but talking to other people about what I’m getting and why and how wheelchair services works has been interesting.


There’s been a definite difference between how other disabled people have taken the news of what chair I’m getting (generally very positive) and how able-bodied people have taken the details of what chair I’m getting (quite negative but in a way that I suspect they think is supportive). At times this has been frustrating and even difficult. I won’t go into any more details because this isn’t meant to be a criticism of anyone or anything.


It’s been eye opening and it’s something that I have been thinking about a lot as there are parallels to a situation I see at CAB often but I’ve never really got before now.  I still don’t think I get it but I can see how and why it happens more now.


A new chair

I’m getting a new manual wheelchair provided by the NHS.

I had an assessment with a rehab engineer and an OT today.  There was some discussion and after a few minutes I said “So I am getting a new chair then?”

And the engineer who is someone I’ve seen in clinic before said “Emma, the only reason we’re letting you go home in that chair is because we don’t have anything here to lend you and we can’t send you home without a chair. If we had something else you’d be in it.”

They also got a new type of cushion out for me to try and the OT declared she didn’t want me taking my old cushion home so sent me with the trial one. That’s a Qbitus Q-Care Integra 2. I’m to ring her tomorrow and say if I want to keep using that or to have a new one the same as I had which was a Jay 2 Deep Contour. Currently undecided on that.

So I’m getting an Invacare Action 4 – this is next one up from the Action 3 I’ve had since 2009 but looks all but identical. The change is due to my weight. I will have new lateral supports and solid back, identical to what I have on this (Jay J3 backrest). Something was mentioned about a higher back but I lost track of what was decided. Slightly deeper seat and elevating leg rests in the hope that will help with both spasms and lymphoedema.  It’s coming in my preferred black.

I knew my chair was desperately showing it’s age but it was working. I had been relatively sure my cushion had had it.  But I really hadn’t expected them to be completely horrified by the state of things.  It’s been made very very clear by both of them that I need to be keeping in much better touch with the hospital based wheelchair team and that this replacement should have been done about a year ago. Although I did tell them that last summer I saw one of the mobile team for a repair and commented about a new one but he basically said budgets meant they didn’t get replaced until they couldn’t be repaired.  

I’m very excited for my new chair – they are marking the order as urgent but no one is sure if that will make a difference. Still hopefully by August I will have it.