This post is being backdated to appear on the 30th but is actually being posted on the 1st because after a month of blogging everyday I forgot about it on the very last day! Then I did remember but I was making much sense as I was tired and it was late.
Having CP is known to cause fatigue. I’ve seen various figures quoted for “people with CP use between X and Y times more energy” but they all vary and I think just like even people with the exact same CP diagnosis/classification are different that is too. It’s true and it’s definitely something I have bur it’s also not something that’s easy to predict. There have been times when I’ve said “sorry, I’m going out for an entire day on the Wednesday so I can’t do such and such on the Thursday, I’ll be too tired” and then woken up on the Thursday absolutely fine and other times when a so called normal Thursday morning in the bureau has led to a Thursday afternoon in bed asleep for several hours.
The other interesting thing is med fatigue. I know loads and loads of people with CP who complain about taking baclofen and it knocking them out, leaving them groggy. The term “baclofen hangover” is something I’ve heard a lot. It was all a bit alien to me though – i didn’t get knocked out by baclofen and it certainly didn’t leave me groggy. Then last year I stopped taking it and suddenly had more energy. I’d been taking it so long I’d obviously forgotten how it made me feel.
But sometimes (and last night) was one of them I’m just tired because I’ve had a busy day or two and lots of stress and not enough sleep. The fact that as a person with CP I can still be tired (or have whatever symptom) for so called “normal” reasons is one that’s all to often overlooked. And that winds me up – because I’m more than my diagnosis and my disability.
Today has been a day filled with aggravations and annoyances and has left me feeling pretty battered.
It’s all little stuff and bar two things it’s petty stuff – someone was thanking the key people involved in doing something and forgot that I’d been one of them. I popped quickly into Waterstones to look for a birthday present as I had a spare 15 mins and the layout of the store meant I couldn’t get into the section I wanted (too closely packed). The trouble is it’s all today and no matter how petty something is and how unimportant in the big picture there all too quickly comes a point where all at once it’s too much to deal with.
And there’s some stuff in their about others expectations of me that I probably need to unpick a little to deal with. But not today.
I did very much hit the point of thinking “oh you have got to be kidding me” when the last couple of aggravations hit.
There were some good things and I don’t want to pretend there weren’t. I spent time with friends this evening and I got to chat with another friend on the phone. There’s a slim chance I’ll get to do something unexpected but very fun next week and I’m enjoying the book I was reading on the train. Plus, I got a copy of a book for free.
Had I been less tired and more with it I probably would have written something along the lines of “Y is for Yay I did it (almost!) and talked about this A to Z blogging challenge and what I think about it, what I’ve learned etc. I’m really pleased to have made it practically all the way though the month and I think I will probably write more about that at a later date.
I don’t have the energy today (I barely had the energy to write this post)
Next week is the General Election here in the UK. I’ve always voted since I had the opportunity. I think it’s really important. People died so women could have the vote in the UK and in countries all over the world people are still fighting for the right to have a vote and a say in government. As a disabled person the ability to vote is even more crucial because there are still in 2015 people who can’t use their votes. Because the polling station is inaccessible or because they lack the support to get them to the polling station/allow them to use a postal or proxy vote. I’ve heard several stories along those lines.
It’s too easy for us here in the UK to take it for granted and not use our votes because we think it won’t make a difference, it doesn’t matter. I live in a safe Conservative seat. I’m pretty sure that they’ll get in again and my vote – my wish for another party – won’t count. But if every single person who didn’t vote, who never got round to it, thought it didn’t matter or was pointless went out and voted everything could change and it could count.
So rather than write some half assed blog entries about X-rays or something else that begins with X I wanted to use this entry to remind everyone that voting matters and ask everyone who lives in the UK and has a vote to make sure they use their X and vote for who they want to win the election.
And please – remember you are voting for the party and not the person.
I suspect most people who read this will already be aware that 1st May is Blogging Against Disablism Day (BADD) as it has been every year since 2006. But I wanted to post a reminder here just in case.
That’s this coming Friday
BADD is an opportunity for both disabled and non disabled people to blog and share about disability discrimination (otherwise known as ableism or disablism) – what they think, what they’ve experienced and even any successes (which for once it’s looking like I might be able to share at some point soon although probably not in time for BADD). BADD has proved a very popular event over the years it’s been running and people participate from all over the world.
It gives a brilliant sense of community and helps to realise that you aren’t alone. I don’t often feel like that but there are times now and then when I forget that others have experienced what I have and know what it’s like.
I’d really encourage everyone who reads this to either participate themselves or if not a blogger to at least read some of the posts people write on 1st May.
Yesterrday I went to visit the botanic garden in Oxford. It was one of my 20 things I wanted to do by the end of this year. We saw some amazing things and I’m sad to say my knowledge didn’t extend far enough to know what a lot of things were. The fact that the majority were labelled only in Latin didn’t help either!
I think the picture above is tulips but I’m not sure. The picture below is definitely tulips. They were some of my favourite flowers there (and not just because I could identify them easily) and they had several varieties. I’m thinking of using the picture of the red ones for a new header for this blog.
This will be my last Self Care Sunday post for a while. Having written one of these every week for four months I’ve decided to take a break for at least May so I can do other things with my blog.
Good things from this week:
I took part in the readathon. I didn’t get anywhere near as much reading does as I have in previous ones but I’m mostly OK with that.
I spent today with a friend and we did something I’ve wanted to do for ages (one of my Twenty Things to do by the end of this year). We went to the Botanic Gardens in Oxford and had a long look round and then went for a late lunch at Prezzo. Finally as I had some time before my train we went to Waterstones and I bought 4 books. For those keeping track despite deciding not buy books in April I have now purchased 6 of the things in that time.
I’ve either spent time with or had contact with several friends I’d been out of touch with for a while (weeks/months)
I knew I was going to be late starting because I spent the morning at a ceramics workshop and I wasn’t home until slightly after the readathon started. But I was later than planned. Making time to read is what’s important though
A Day In The Life of Ivan Denisovich by Alexander Solzhenitsyn paperback, 143 pages on TBR since 20 March 2013 (according to Amazon)
This is one of the 1001 books you must read before you die and I can see why this is the case. I felt like I learned something reading this book with it’s hard hitting subject matter. A worthy read but not a difficult one.
Oh Whistle And I’ll Come To You, My Lad by M.R. James audiobook, 50 minutes (44 pages approx in print) on TBR for a couple of years
This isn’t a book that I’d have chosen but it was given away free to all Audible members one Christmas several years ago. And I can’t resist a freebie. I’d been putting off listening to it because I’d heard it was a ghost story but it was creepy but not scary so it wasn’t a problem. I loved M.R James’ turn of phrase in this, especially right at the beginning. I’m glad to have this ticked off my TBR but it’s not something I’ll revisit and I doubt I’ll read more by the author.
I do a lot of volunteering and I have done for over ten years. It’s a great way to fill my time and allows me to make a positive contribution to society whilst working around the limitations of my disability and my inability to work in a paid role.
OK that sounds pompous and technical but basically volunteering works for me because I can do it on my schedule. I can ensure that I pretty much never volunteer two days running and that I only do a few hours at a time. If I can’t manage to go in on a day I’m supposed to it’s not a problem and if I can manage to go but only to do part of what I’m supposed to they work around it with no pressure. Plus in my CAB role there are one or two things that advisers do that I don’t to make things easier for me. Volunteering has a ton of flexibility that paid work doesn’t.
And it makes me feel good about myself (most of the time).
Mostly I volunteer for my local Citizens Advice Bureau. I’m there twice a week most weeks doing roughly 5 hours in total over the two sessions. I’ve been there for ten years and I’ve done a variety of things in my time there.
One session a week I volunteer in client facing roles which is either as a gateway assessor – doing a ten minute triage type interview with people who drop into the bureau to work out if we’re the right people to help and what sort of help they need. I quite enjoy doing those but I suck at sticking to the 10 minutes. That said pretty much everyone does. Alternatively if I’m seeing clients that might be as as adviser doing a full advice interview. That’ll be with someone whose been through the gateway process and needs further help from us.
My other session I work as Research and Campaigning coordinator which can be anything from gathering evidence to writing letters to our MP.
I’m also an involved resident with my local housing association who I rent from. Up until recently I chaired their disabled residents group but someone else has just taken over. I do things with them on a much more ad hoc basis and that can be things like helping with the annual report, contribution to the tenants news that gets sent out and attending focus groups. I’ve made a couple of friends though that and had coffee with one yesterday.,
I was going to do L is for London back when the A to Z challenge reached L but then I figured I didn’t have anything for U so I’d do this instead.
I love London. I seem to go every couple of months and that’s gotten much more frequent over the last few years. So far this year I went to London in January (to see Cirque du Soleil) and I went twice in March – for one day to go up The Shard (when we also ended up going on the Cable Car too) and then overnight a few days later to go to the Simon and Schuster blogging event.
There are many reasons why I love London and I can’t list them all. It isn’t a complete love story because I do get very annoyed when I’m there sometimes by lack of dropped kerbs in some places and people everywhere and the like but I enjoy it a lot.
And this probably sounds really weird if you don’t have a physical disability but one of the major reasons why I love it is The Tube (underground). I had never really gone on the Tube until I was 30. And by never really I mean once only. I’d always assumed it wasn’t going to be possible as a wheelchair user.
Then came the summer of 2012 and the Olympics and the paralympics and in a very short period of time I went from being scared of the tube to using it with someone with me to using it confidently by myself.
It’s still tricky because huge parts of the network aren’t accessible in some cases those that are don’t work for me (London Paddington I’m looking at you). And it relies on lifts working and on knowledge of things like when I go to Green Park I have to board at the back of the train for level access and when I go to Kings Cross there’s another specific part of the train I have to board because those stations have raised platform humps and if you aren’t in the right part it’s not accessible.
But it’s brilliant and it’s really opened up London to me and given me an independence I didn’t think possible.,
I travel all the time my mainline trains and that works really well too. But for those I have to book assistance in advance. It’s not a problem because I pretty much always know in advance and I’ve gotten to know the guys working at my three most common stations and we’ve gotten a bit friendly over the years and I have a laugh with some of them. But it’s not great at spur of the moment independence.
And even though I’ve been using the tubes for three years now it still slightly blows my mind when I drive my chair onto a train without help and without even having to let someone else know I’m travelling. It’s given me a whole new level of independence and that’s a big part of the reason why I love London.
I’m continuing to try and read books that I’ve had a while and not read. I picked up a set of two books when I was in Sainsburys earlier this week but then I went and put it back because it was a total impulse by and very much driven by the fact I was getting a book I thought I might like and a freebie too.
Three of the four books listed here I’ve been reading for a couple of weeks in a stop start fashion and are on the 1001 books list.
Empire of the Sun by J.G. Ballard paperback, 351 pages, on TBR for an unknown number of years
I’ve been looking at this on my shelf for months (before i started focussing on my TBR) and thinking I wanted to read it. But for some reason I really had it in my head that this was sci-fi so I was surprised to find it’s a second world war book. An unusual but enjoyable read.
The Virgin Suicides by Jeffrey Eugenidespaperback, 249 pages, on TBR since early 2013
I enjoyed this a lot and it made me want to read more by Jeffrey Eugenides. I’m not sure I’d read anything like it before and it’s difficuilt to explain it’s style but it’s good. You’d think a book about several suicides would be depressing but it was anything but.
The Inheritance of Loss by Kiran Desaipaperback, 320 pages, on TBR since September 2014
I liked this and especially liked the setting and it;’s characters. But I must admit that when I finished it I felt like there was probably some message in it that I was missing.
Season of Secrets by Sally Nichollspaperback, 254 pages, on TBR for an unknown number of years
This is kidlit with a main character who is at primary school. Despite very much not being it’s target audience I found it great escapism and it kept me guessing. I read it in one sitting of less than two hours. I’ve read another book by Sally Nicholls several years ago and choosing to read this second one was definitely a good decision. I should have read it sooner though.