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!

 

The Changing of the Guard.

In just over 12 hours I have an appointment with wheelchair services to have my new wheelchair fitted.  If all goes according to plan it comes home with me and my action 3 stays there.  Policy is that wheelchairs returned to them go to the workshop and get refurbished before being reissued.  I doubt they’ll even bother to look at mine because the reality is I use my wheelchairs to death before they get replaced and it’s fit for nothing but a trip to wherever it is dead wheelchairs go when they’ve served their time.

I’m looking forward to it and very hopeful that the new set up will be better for me.  And I’m really looking forward to having a wheelchair cushion for my powerchair and one for my manual again after six weeks of just having one and having to switch it every time I switch which chair I’m in.  I went for another Jay 2 Deep Contour in the end if anyone is wondering.

This is the longest I’ve ever had a wheelchair for – Facebook told me that my assessment for it was 8 years ago this week and it took another three months to come after that – and I’ve been feeling a bit introspective this evening. I talk about how my manual chair is for home (mostly) and I use my powerchair for going out. And I had decided that I’d like to do more going out in my new manual. 

But thinking back over the last 7 and a bit years it’s done a lot more than help me at home. I’ve used at funerals and friend’s weddings. It went to Birmingham for a three day conference, London for an awards ceremony and Cardiff for my sister in law’s hen do. I was in it when I went to the hospital to meet my nephew. It got me on theatre trips, shopping and to many other things. I’ve used it (and abused it), fallen out of it, done many a thing my wheelchair team would disapprove of, been told that the repair team like coming to me because I really use my chairs and they know whatever I’ve done I’ll have enjoyed it. And basically lived.

My chairs are a part of my body. Always there, always working to keep me moving. My powerchair is the hero, the one people see, and the one that does the big stuff. It’s the celebrated one and people worry if I’m not in it.  My manual chair that’s the quiet one in the equation that allows me to live and thrive as an independent woman. But it’s a key role, unseen but oh so necessary.  I need it as much as I need my powerchair and I can’t wait to see where I’ll go with the new one.

A blonde haired toddler having a go at pushing a woman in a green fleece in a manual wheelchair(This is one of my favourite pictures of me in my manual. I went to Millets Farm and having seen his Daddy pushing me my nephew decided he wanted a turn.)

One Summer In Tuscany by Domenica De Rosa

Today I am kickstarting my return to book blogging by taking part in the blog tour for One Summer in Tuscany by Domenica De Rosa. And I don’t think I could have picked a better book!

Patricia Wilson’s carefully composed ads for the writers’ retreat she runs at her thirteenth-century Italian castle promise so much. But while the splendour of their surroundings and chef Aldo’s melanzane never fail to wow the guests, huge maintenance bills and bad news from the bank threaten to close Patricia down. It’s make or break time for the Castello.

Each of her seven aspiring authors arrives with the inevitable baggage alongside their unpublished manuscripts. But this August something is different, and soon lifelong spinster Mary is riding on the back of Aldo’s vespa, and smouldering odd-job man Fabio has set more than one heart racing.

As temperatures rise, the writers gossip, flirt and gently polish their prose by the pool. But with ghosts, scorpions, and some unexpected visitors to contend with, one thing’s for sure: neither the Castello, nor Patricia, has ever seen a summer like this.

I think this is probably going to be a short review because I really enjoyed it and don’t want to spoil it for anyone. In fact you should all just ignore the rest of this review and go buy yourself a copy to read instead.

I will start with two things. The descriptions of the food in this book were amazing and left me really hankering for some Italian food, specifically a big bowl of pasta with a glass of wine on the side. If you can, those would be the perfect things to have whilst reading One Summer In Tuscany.

And as much as I really found the creative writing tutor to be a bit of a “love to hate him” character some of the things he said about writing in the book made me think and made me want to pick up my own long neglected novel attempts.

One Summer In Tuscany was the perfect book to lose track of time with on a warm summer day in the garden. If, like me, you aren’t getting away this summer it’s the next best thing to an actual trip to Italy and I highly recommend it.

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.

Not five minutes but five weeks

Today is Blogging Against Disablism Day.

For the last five weeks I’ve been dealing with a somewhat ridiculous access situation.  What I actually need should be incredibly straight-forward. I need to be weighed.  I am not allowed to go sailing until I can confirm my weight to the powers that be. That’s because they’re checking equipment safety. I have no problem with that. 

You can buy scales in Argos for less than £30. But as a wheelchair user it’s not accessible to me. The accessible scales you can get cost over £1000. You can go to the GP to get weighed. I can’t. There isn’t considered to be a need for accessible scales.

 I’m told I don’t need to be weighed,  I can track weight gain or loss through measurements or how my clothes fit. I’ve been having versions of this conversation for years.  But I do now need to be weighed.  To keep me safe and more importantly to keep those helping me at sailing safe.

This whole situation is ridiculous. No one who might be in a position to help seems to want to help.  Those who offer help can’t do anything. 

People have led me to believe access was available when it wasn’t. People haven’t understood what I need and then got annoyed when I corrected them. I’ve been asked three times in the space of one phone call “you cant stand on the scales?” I sent an email to somewhere that we think can help and their admin person replied that they had passed my query on to the relevant person. This is somewhere that request email is used if possible.  Three weeks later I chased it and got what boils down to “you know we’ve had your email, shut up and wait” in reply.

I don’t usually have “if I wasn’t disabled” on my radar. It’s not healthy and it’s not necessary, as a CPer life on wheels is all I’ve ever known. But there is no escaping the fact that I’m currently five weeks and counting into trying to find a way to do something that were I able-bodied could have been done in five minutes or less. And I don’t know when it will be resolved.  

A brief update

I swear I’m not giving up blogging but it does seem more and more like I am with how rarely I’m updating at the moment. I would write about my  plans for this blog and how I want to write more.  But as true as that is writing it doesn’t make me actually follow through on that plan. I do miss blogging but I miss the olden days of blogging (Diaryland and my first year or two on wordpress) more than I miss what blogging is now. It was more anonymous and more of a community and just nicer.  Not to say there aren’t positives to what blogging is now. It’s jut different in a way that isn’t good or bad.    

Things are oh so slowly improving. I haven’t missed a single dose of Citalopram since I started it and suddenly realised on Monday just how much my anxiety has improved. It’s not a crushing overwhelming feeling of things being too much any more.  In fact whilst I do still remember how it felt, it’s almost like the details are fading away making it harder to describe as it becomes less of a daily occurance. The depression side of things still isn’t great but I still need a few more weeks for the full dose to have completely kicked in really. And I am in a difficult situation that’s hard to resolve (a tale for another day) which is likely influencing that.  

And most importantly, I’m reading regularly again. If ever there was a sign that things are improving it’s that. And that makes me      happy!

Random Bullet Points of Life

For the little things worth recording but perhaps not worth a whole blog to themselves.

  • I’ve been on Citalopram for four weeks now. It’s working although perhaps not as good as it could.
  • I have high levels of spasticity right now which may or may not be due to the Citalopram. Certain other SSRIs have made it worse in the past so who knows?
  • The sailing season has started but at the moment I’m not able to sail. We need to resolve a situation before that can happen and it’s proving tricky.
  • Last week I went to see Billy Elliot the Musical with Rach.  It was really, really good.
  • My powerchair eventually got fixed quickly and easily but the mileage got partially reset when they did it which was weird.
  • Lately I’ve been doing a lot of work at CAB helping people with mandatory reconsideration and/or appeals of benefit decisions. I’ve found that I quite like it because there’s a process and it’s often clear but I’m not sure I should like it.
  • I went to see Beauty and the Beast on Saturday. I liked it but think I prefer Disney cartoons to live action. I heard something about a live action remake of Aladdin. I consider this a travesty (but wouldn’t say no to going to the musical)
  • At the moment I’m listening to a lot of audiobooks and crocheting squares. Currently my audiobook is The Stranger In My House by Adele Parks. It’s good but it’s based on a ridiculous premise that would never happen. 

A Little Bit of Life

(I am surprised that with nearly 2000 entries on this site I’ve never used the title A Little Bit of Life before)

Two bits of not so brilliant but they could be much worse news are in my life at the moment.  I don’t think dominating my life is the right term but they are definitely big factors in everything right now.  And not easy. Life is never easy.

I will start with the slightly easier one first – my powerchair is broken.

The easiest way to explain it is to say it has a broken castor.  It’s more complicated than that because of the spider-trac but basically it’s not right and it’s manifesting in one of the castors (I’m not sure but I think they won’t need to replace the wheel to fix it).

It’s been niggling at me for at least a few weeks that it wasn’t right but when Mum looked she couldn’t see anything wrong with it and I wasn’t sure so I left it. But eventually I figured, it’s under warranty, get them out. And unfortunately it is broken. (the scary thing here is that I probably wouldn’t have called them out if I’d have had to pay a call out fee). I’ve been waiting 10 or so days for the part to come in which will hopefully be at some point next week. I’m told it’s fixable and it’s covered by the warranty. I’m also told the wheel is definitely not going to fall off and I can keep using it in the meantime (although I’ve chosen not to go to Reading today like I wanted to just in case). So it’s positive bad news. It does need to go into the workshop when they have the part though.

The second part of the news is that I went to the Drs last week to discuss my mental health and am now on Citalopram for depression and anxiety.  I was last on antidepressants very briefly two years ago at which point I came off of them much sooner than I should have. I’ve decided to commit to at least a year of meds this time.

I said to her that a lot of the time previously it’s felt like depression was the bigger issue but as much as I am depressed now my anxiety feels much more prevalent. That’s why she gave me Citalopram as opposed to the Sertraline I’ve had most recently.

Citalopram was actually the first ever antidepressant I took in 2003 when I was diagnosed originally but I had to come off of it after a couple of weeks due to nausea. It had been getting better but my then GP said to try a new drug (I went onto Lofepramine for 18 months and then had several years on and off of Fluoxetine before trying Sertraline). My current GP has put me on a 50% dose for a few weeks and I’m only just a week in but I’ve had one terrible day for nausea and a day or two of feeling off. So it’s more positive than I hoped.

I won’t go into the ins and outs of how everything has been and all that.  What I will say is that it suddenly feels so much harder to talk about mental health than it has done in previous years.  A huge part of that is that a couple of people I’ve talked to about it have been really negative about it and my choosing to go on meds.  And in one case gave me some unasked for advice that was potentially very dangerous (thankfully as this is not my first go with this I knew they were full of shit).  I might blog more about that at some point soon ish as I’m hoping to get back to writing regularly but I think that’s all I’ve got to say for today.