Self Care Sunday

I’m eating maltesers whilst writing this. I treated myself to a maltesers easter egg when I went to Sainsburys on Friday, ate the egg yesterday and left the maltesers for today. That’s probably more self indulgence rather than self care (self care would be cutting down the amount of chocolate I eat which realistically is something I desperately need to do). But they are yummy and I don’t care.  Last year I treated myself to several maltesers easter eggs but I am hoping to find more willpower this year and have this be the only one.

It’s not been a great week to be honest. My mood has been pretty low at times – sort of zig zagged between that and normal.  I should probably do something about that but as yet I haven’t despite keep thinking “I’ll do XYZ tomorrow.”  Probably a visit to the GP wouldn’t go amiss but most of the GPs I know have left the surgery over the last year and a bit (I don’t think I’ve seen a GP since last March), my GP is someone I’ve never met now and the GP who used to be mine is still there but for very few hours and is very hard to get an appointment is. To be honest it feels like getting an appointment would be stressful and going might not be much better.  Which is crap I should probably just go. Or take my damn meds or something – it’s roughly a year since I stopped taking ADs,

What has been good this week?

I read a short novel cover to cover on Friday and really enjoyed it.

I started making plans for a friend and I go do something I’ve wanted to for ages

Next week I should finally be having coffee (I have no idea why I call it having coffee when I don’t like coffee but I do) with someone from an online/offline writers group – that’s been on the cards for a few weeks but schedules and the distance apart we live have made it tricky to arrange.

I had lunch with a good friend I’ve not seen in a few months. That was a lot of fun and the pizza I had was delicious. I keep swearing that next time we go I’ll choose something else but I never do… And I just interupted writing this to send her and email about going for a drink or something one evening like we’d talked about. Not letting things slip.

Curating the Oxford is Yours twittter account has been an interesting experience too.

So perhaps I’ve had a better week than it would first seem.  But a proper look at my mental health is still something that I need to do. Much as I’d rather not.

Rotation Curation for #Disability #rocur

I’ve been curating the @OxfordIsYours twitter account.  It’s a RoCur (Rotation Curation) account for Oxford and the person who runs it said living in Oxfordshire counts.

Basically RoCur is where there’s an account (often on twitter) where people take a week at a time to run it and share their experiences and tweet on the subject.  Most of these relate to places – like with Oxford Is Yours I’ve been tweeting about where I’ve been and what I’ve done – but some relate to hobbies or jobs or organisations or anything else.

I’ve been enjoying it and have learned about a place in Oxford I’m going to visit soon I didn’t know about. I’ve also met a couple of new tweeters who I’ll follow from my own account when the week is over. And possibly have a couple of other places and events in mind I’d like to go to the logistics of which may prove tricky as they aren’t in places I can get to easy.  That’s basically the point of rocur – to share tips, tricks, and experiences and recommend places and venues.  The person who runs OxfordIsYours said to me last weekend she was looking forward to reading a week in my life and that’s basically what it is.

Admittedly days like today when I’m close to home and not doing very much it feels like a struggle to have anything relevant to the account to tweet. But on the whole it’s been an interesting and fun experience and I’m glad I’ve done it.

I’d really like to have a go at curating People of UK for a week.  But what I’d really really like is for their to be a disability rocur.

And as far as I can tell there isn’t one.

I’m thinking about setting one up.  I know of one other person who is interested in taking part. But I think we need more than that to set it up.

So I need help to do that.  I need to know if people are interested in that.  And if so

I need people to be curators.

I need people to signal boost this message

And I need people to read and comment and tweet and just generally try to use this as a way to make our already pretty awesome disabilty community online better and more of a community.

I was asked on twitter what definiton of disability I would apply and I’m going to go relatively wide and say you simply have to self identify as disabled.  I am however going to specify that this is not at present open to carers because I want it to be a space where disabled people can share and speak for themselves.

Once I know that there’s some life in this idea and people are interested I will write up some more guidelines with specifics but basically it doesn’t just have to be about the disability side of being a disabled person.

Let me know in comments if you are interested or tweet me @FunkyFairy22


Self Care Sunday

I’ve had a good week. I’m really tired today for some reason though. This became clear when I was talking to my sister on the phone. I asked how she was, she told me. Then she asked how I was and I told her before asking how she was again. I did immediately go “oh, I already asked you that” She offered to say something different in response this time but I turned her down.

Yesterday I went shopping for the day and then came home and watched TV and listened to an audiobook (Northern Lights by Philip Pullman) and the like. I didn’t go online at all which is good.  I also started reading an actual book (The Supreme Macaroni Company by Adriana Trigani) which is really good because I’ve not been reading much at all this month. This is demonstrated by the fact the only book I’ve been reading is Northern Lights and that took me 15 days to listen to.

The other good things this week is that I’ve managed to drastically cut down how much coke I drink which is something I’ve been needing/wanting to do for ages. I did end up with a pretty stonking headache the second day though.

And I’m just about to have pizza for tea and then take over the OxfordIsYours twitter account for the week 🙂

Nothing to report

There isn’t much to report today but in the spirit of trying to blog more about the normal, mundane and boring I thought I’d post about it. I was going to title this post “dispatches from today” but I wsn’t sure if the correct spelling was dispatches or despatches so I didn’t.

I was at CAB this morning where I did one gateway and one appointment. And hung around a lot because the system was down so I couldn’t really do any research and campaigning stuff (as social policy has been renamed) like I normally would if I had a free frew minutes.

Then I popped into Soha where I got to see several people I’ve not seen for a while including one I’ve not seen for months and months which was very nice to catch up.  I feel like we achieved a lot and I was writing part of a piece about blogging for tenants times. Which was very useful because although my lack of enthusiasm for blogging that I had a few months ago had mostly gone it reminded me exactly what I love it and made me feel much more energised.

Once I was home I made several phone calls including have a long chat with a friend I’ve not seen for a few weeks. Interestingly I told her something that had been said to me and she’s probably the 4th, maybe the 5th person I’ve told that. Every single one has immediately said some variation on the person who said it was lying. I am amused.

I got interupted at that point by my Dad coming to do standing with me. I managed 30 minutes which seems to be pretty standard for the moment but my legs, particularly my ankles felt very tight. I’ve tried to do a few rotations of them since then. That might need to be a more regular thing but it’s so easy to forget to do it.  I was keeping a spreadsheet of how long I spent in the frame each time I use it this year but I’ve given up mostly because I forgot several times. I attempted the same thing last year although I did keep it going for longer then.

I then went to Thursday night knitting. We call it knitting even when we do other stuff. Even our former group member who only did crochet used to text and say she couldn’t make knitting or whatever. I was, in fact, doing some crochet tonight.  I’m quite pleased with how it’s coming out even though I’ve only done a tiny bit. I was less pleased when I got there and my friend pointed out the ball of yarn I’d put in my bag had unravelled slightly and was hanging down and caught in my wheel. ARGH. It seems as though she got pretty much all of it out though so no worries.


Normal, Mundane and Boring

This is something I’ve been thinking I should blog for a few months but haven’t got round to. I was talking to someone about the internet and disability earlier and this was something I mentioned. So now I’m blogging it.

I think sometimes it’s very easy to blog about the things that make me angry or that annoy me or that happen out of the ordinary. Generally things I blog about are things that I’m passionate about and often times that passion comes across in blogging about negative things.  It’s easy to forget to blog about the other side of the story – the times when things go well or are positive. Usually because that’s just routine and isn’t really worth noting.

Back in November I went to London and I had an absolutely terrible journey home. There was an issue with part of the tube not running and my need for step free access making finding an alternative route difficult (this was in part due to a failure on my part as an advocate because I didn’t have the knowledge to push for what should have happened to happen). And then there were big problems with the regular trains due to overruning engineering works and again.  It was frankly a nightmare

Early last year I also had a bit of a nightmare journey. In part because I was using stations I’d not done before, in part because it was during the floods and in part because I was travelling with a couple of people I’d not done before. And their expections of what would happen, my expectations of what should happen and the reality of what did happen were all slightly different.

I then spoke a few months ago to someone who was with me for one of those journeys and told them about the other.  I know they read my blog so they may have read other stories of difficult trips. This led to their commenting that I “don’t have much luck” travelling on the train

And nothing could be further from the truth.

By my reckoning since the beginning of this year I’ve

Been to Reading once – and that train journey was fine.

Been to Birmingham once which involved changing trains at Oxford – and those journeys were unremarkable

Been to London Paddington once – apart from having to chase after the assisted travel staff member when he tore off from the customer reception to my platform faster than I could go it was fine. Terminal stations, particularly London ones have a reputation for making you wait for assistance but there was a man with a ramp ready and waiting when the train pulled in. I came back on an earlier train than I was booked on and asked my Dad to go to the station at this end to meet me. When he got there they said “We know she’s coming on the earlier train!”

And counting today I’ve been to Oxford at least four times. I did have to come back via Reading on one of them because of a broken lift. But it was easy and I got to chat to someone who works there I’ve known for years but hadn’t seen for ages.

That’s basically 17 trains. (7 return journeys, one of which involved a change and my extra diversion to Reading). 34 interactions with station staff who needed to be there with a ramp and help me. One that was a problem but which was quickly and easily resolved with little stress. And none of them were negative or bad or really worth remembering.

It can hardly be described as my having solely bad experiences with the trains.

But – and I suspect this is true of many things if I think about this – I don’t blog about the normal because it’s mundane and boring and not worth doing so.

I think perhaps I should.

Self Care Sunday

I think I’ve done good with self care this week.  Nothing hugely tangible but I’ve definitely done better at saying no to things and enforcing my limits. And although I didn’t manage to spend the entire day yesterday offline like I’d thought about doing I have managed to spend less time online in general.  Whilst I do really enjoy days that are completely offline I think a general reduction would probably be better or at least do me more good. It’s still a work in progress though and probably always will be.

Unfortunately I’ve also had a bit of an access problem this week and I probably didn’t handle that too well.  Or at least not when someone only vaguely related to what happened inserted themselves into a discussion about it and started telling me I had to understand the stituation and also that it was a mistake that probably shouldn’t have happened. Someone who appeared not to understand the situation themselves. Mostly due to their able priviledge.

I did manage to escape from that situation and from another where I (stupidly) put myself in a situation of having to deal with someone I can’t stand due to their being an arrogant idiot without wanted to bang my head against a brick wall though.

It seems like I’ve not a lot to say this week but on the whole it’s generally very positive.

Random Bullet Points of Life


Random bullet points of life: for the little things worth mentioning or worth remembering that might not need their own entry

  • I destroyed my wheelchair charger last week. Luckily just the kettle lead part so I was able to resurrect it temporarily.  I’ve since got a whole new charger because I’d been debating for months about whether I should have a spare.
  • I got my powerchair serviced when they brought me my new charger and needed new back casters. The technician had some old ones from another chair on his van so put those on because there were nothing wrong with them, I’d probably get and few months use from them and that would be cheaper for me (and in fact did that without checking with me GRRR). I’m hoping that’s not a decision to regret.
  • The charger/service/new to me castors combo is expensive. But as always it’s much less expensive and much longer lasting than taxis to everywhere I would need to go.
  • I’m waiting for a tesco delivery right now and had declared the waiting time as writing time. So I’m updating my blog.  Which almost but doesn’t really count
  • At the new year I decided I was going to go out and write out of the house at least once a week.  I did that a bit on Sunday. And I did it properly today. Winning there at last.
  • London Paddington is probably the most frustrating train station I’ve ever been to for assisted travel. It just edges out Ascot who get a pass for how rude they were to me last time I was there due to the fact my train had terminated unexpectedly and they had to rush to get me off a train with literally zero warning. Paddington were just rude and unhelpful.
  • Everytime I start going back through old blog entries I get lost in them for ages. I was just looking for a story I know I’ve blogged about before – a funny thing that happened on a years ago trip to Paddington – to link in this and couldn’t find it but did read every single entry I’ve ever tagged with trains (13 of them I think) and only stopped because I ran out of them.
  • Yesterday’s snow was disappointing. It forced me to cancel my plans for the morning but was cleared up enough for me to go to my mums as planned for the evening. Which was good.  But I’d have liked it if it stayed snowy today so I could have had a PJ day with naps and books and knitting while watching tv. I’m tried today.
  • I’m trying to get better at saying no.
  • I’m knitting a boring square (one colour, plain knit, boring) at the moment and am ready to be done with it.

Self Care Sunday

This week has been a difficult one in many ways. I felt like I bounced from problem to problem for several days. I have managed to deal with and resolve all but one of them (that one is a work in progress) but it’s taken it out of me. I’m writing this blog entry at a writers group in Oxford at which no writers appear to have come but me and a friend who came with me. I’m really hoping the train trip home will be as easy as usual. And part of me is wishing I’d stayed close to home today. I did enjoy lunch with my friend though. I don’t know what the wifi password is in here so I’ll probably post this when I get home.

Unless I change my mind and write a whole other self care Sunday blog post.

Luckily my trip to London on Friday went really well and was completely hitch free. I met up with another friend and we went to The Royal Albert Hall and we went to see Cirque du Soleil’s Kooza. The show was absolutely incredible and I loved it. Several of the stunts were the sort that made you gasp in shock and then watch with your heart in your mouth sorts though. I think they play on that.

It remains difficult to decide what to call self care and what isn’t. I’m doing better than I have in a long time in taking care of myself but I still need to be doing better.

But as I wrote that it occurred to me that I’ve contradicted myself a bit with that statement. It’s true that my sleep pattern remains screwy and I’m not eating as well as I’d like or achieving everything I’d like to be. I am achieving more things – my goals for this blog were ones I met in January for one example and I listened to an audiobook (my goal is one a month) for another.

So it might be that what I really need to do is stop being so hard on myself? That’s something I’m going to need to think about. And perhaps to work on.