Dust If You Must

So as you can probably tell from my last few blog entries I’ve been doing a lot of thinking lately.

My sister commented on one of those entries that it made her think of a poem that’s doing the rounds on Facebook. I’d seen the one she meant bit not paid too much attention to it. Sometimes my newsfeed feels like a never ending stream of photos, poems, quotes and sentiments all designed to inspire or to make you think or feel good and they begin to blend into one. Which probably defeats the object but there you have it.

Anyway after reading that comment I did a little googling and tracked down a copy. I think it’s worth sharing here. It fits well with what I’ve been thinking and writing about and is probably worth remembering which I won’t do if it stays just a thing I saw on Facebook.

Wikipedia tells me it’s called Dust If You Must and is by Rose Milligan. It was originally published in 1998 in The Lady.

Dust if you must.
But wouldn’t it be better,
To paint a picture, or write a letter,
Bake a cake, or plant a seed?
Ponder the difference between want and need.

Dust if you must.
But there is not much time
With rivers to swim and mountains to climb!
Music to hear, and books to read,
Friends to cherish and life to lead.

Dust if you must.
But the world’s out there
With the sun in your eyes,
the wind in your hair,
A flutter of snow, a shower of rain.
This day will not come round again.

Dust if you must.
But bear in mind,
Old age will come and it’s not kind.
And when you go, and go you must,
You, yourself, will make more dust.

Legacy

I can’t remember where but a few weeks ago I read something that I’ve been thinking about on and off ever since. It said that in the future our descendants won’t need to employ traditional genalogy techniques to learn about us. Because what they know about us will be from our facebook posts, tweets, and blogs.

I like that idea because it means that potentially (should it turn out to be true) it means those in the future will know a lot more about my past then I will tell them. And they’ll know more about me than I do my own ancestors.

I knew all of my grandparents and saw three of the four regularly until they died. It’s been years but I still miss them dearly. I have memories of time we spent together and of some stories from before I was born that they shared.

I never met any of my great grandparents and really I know very little about them. Sometimes I hear the stories and I think that I want to know more. Or I remember a time with Grandad or with Nanny (my mums parents who were divorced for most of my life and I have few memories of them together) or with Gran and Grandad (my Dads parents) and I suddenly wish I could ask them why was… Or what happened next?

That’s partly why I kinda like the idea of my Internet postings as my legacy. Because its my words and my experiences told my way. Future generations probably will know us in a whole new way than before. As a disabled person it’s probably extra relevant. I think we’re in a time of big upheaval and change in the disability movement and whilst its looking bad short term, in the long term it could go either way. I suspect with the Internet as an archive or legacy the saying “history is written by the victors” will cease to have quite as much meaning or power.

But it’s also making me think more about what I do post. The way I blog has been changing over the past year or so. My boundaries and what I feel comfortable sharing have altered a lot. In part that’s because I’ve changed but the changing dynamic of the Internet and online community has played a role too. I feel I post more about what I’m thinking than what I’m doing now. But at the same time whilst guarded some of it is more personal, more open. That was happening before I heard the legacy quote. It just gave me an understanding to my thinking I’d maybe been missing before and brought another aspect to it.

If my great great great granddaughter knew nothing about me but the contents of one tweet do I want it to be the fact my arm itches right now? So I am trying to perhaps think again before tweeting or facebooking or blogging and share what is really important to me first.

That doesn’t mean that all the silly and random stuff I post is going. Because sometimes I’m still gonna want to share that silly joke I heard or that I had pizza for tea.

State of the Emma

I was quite torn whether to call this entry Random Bullet Points of Life or State of the Emma.

If I’m completely honest I’m not sure I’ve really got any news to share here but it feels like absolute ages since I posted something here that wasn’t a book review so I figured I probably should.

Generally things seem to be going well. I started the year off with a bang when I got a UTI a few days into it but that cleared up easily and with just one course of antibiotics so it’s all good. I am beginning to wonder if nitrofurantoin needs to be put on my do not take list of drugs though. I seemed to feel crap the whole time I took it.

The other thing that came out of that appt was that my blood pressure was checked and it was really high. I had had a really stressful morning trying to get out of the house, having shedloads of spasms and throwing my handbag across the waiting room being some of the highlights. And then I tried to ask the locum GP to check how long a course of antibiotics I usually have in my records because I have it longer than she said usually and it didn’t go too well. So it’s not overly surprising that my blood pressure was high. I had an appt to go back and get the nurse to check it but thanks to the snow I had to cancel it.

I was snowed in for a week (I could possibly have gone out the night before I did but decided not too as it was dark and I knew the paths were still icy). For the most part I coped really well with that – in fact it surprised me how unbothered I was by it. I did loads of reading and crochet and started a sort out that’s been on my todo list for ages.

There definitely was something else I wanted to mention under this heading but I’ve lost my train of thought and have no idea what it is!

I’m trying to make serious inroads into my TBR stash which has surpassed pile status approximately a year ago and has been up around the level of mountain for quite some time. The snow helped with this a lot but there is a way to go yet! I’m considering implementing a book buying ban for the next two or three months.

I also briefly considered earlier that I might make 2013 a year in which I don’t buy yarn. But then I remembered that not only did I buy a 300g ball of blue aran a couple of weeks ago, I bought a ball of yarn yesterday. Clearly this is a plan that requires more thought but certainly my stash there is in need of getting under control. That’s part of the sort out I started and I’ve been putting it into piles of yarn I think I’ll use and another of remnants and other bits I don’t think I’ll use (subcategory what the hell was I thinking buying that?!) It’s interesting how much I’d forgotten about but then find and remember what I used it for (or more likely what I wanted it for) and bits like where I bought it or when or… Memory is a strange thing sometimes isn’t it?

State of The Emma

Title blatently stolen from one of my friends who frequently posts blogs titled “State of The [her username]” Couldn’t resist!

I’m doing better, I think.

I had a UTI or a virus or something the other week but that’s resolved.  Locum GP thought virus but was happy to treat as though it was a UTI based on my history and my symptoms.  I’m not sure what it was but I took a five hour nap one of the days when I was “off” so I definitely had something going on.

I’m mostly medicated. And I’m a lot more motivated.  I’ve still been thinking a lot that I don’t fancy doing this or I really can’t be bothered with X but I’ve been pushing past that and doing stuff.  Enjoying it too. Which means the “meh I can’t be arsed” feeling comes less.

Very very spastic at the moment. But less than a few days ago.  I think I’ve noticed a trigger for that which I hadn’t picked up on before.  Not one I can avoid but it’s definitely manageble. And I’ve put a spare pillow on my bed and started shoving it under my knees when I sleep if it’s really bad.

I bumped into a couple of acquaintances and had drinks with a good friend on Wednesday.  Possibly I might go for a drink with one of the acquaintances too, I must facebook him and sort something out.  I also went to an interesting CAB meeting and accidentally ended up in HobbyCraft.  That was a good day.

I was most amused by the fact that the meeting took place on Electric Avenue in Oxford.  Above the street name someone had spray painted “gonna rock down 2”

Gonna rock down 2 (graffiti) Electric Avenue (street sign)

Finally, I set a new record for the standing frame on Tuesday!  50 minutes! I made my Dad take a photo of  me in the standing frame holding up my iPad with the timer on it.  But that’s still on my camera so I’ll have to share it another day.

Mojo

I think it’s probably obvious to many people who read this that I’ve not been myself for the last several months at least. Since April I’ve been dealing with issues which have left me very depressed and struggling with feelings of worthlessness. I’ve not done a particularly good job of dealing with that and taking care of myself, not least because my medication compliance slipped way down.

Going to the Paralympics however has made me really want my mojo back. I want to be me again. I want to get back not just to the girl who I was before all this kicked off five months ago but who I was a few years ago. Or a variant of that girl. Whoever she was. Sometimes I’m not sure I remember her correctly.

Today I made two decisions – one of which has been on the cards since May and which a couple of people been pushing me to make. That has however involved backing down from a fight I’ve invested a lot of time and effort into. But I was never going to win that. It feels wrong for a fighter like me to back down and not get resolution to such blatant (and easily solved) discrimination as that of the NHS weight loss clinic who can’t weigh a wheelchair user. It was pretty toxic for me though so dropping out of the course was necessary.

The second has only been a consideration for a week or so but I’m pretty excited by it. I know it’s possible and that the majority of the logistics involved in it are easy for me. There is however a small bit logistics wise that should be doable but I need to try to be sure given some of the issues I’ve had with my powerchair and public transport. Actually, that should probably be a separate part of the “getting my mojo back” plan now I think of it.

I also ordered prescriptions for the majority of my meds (I didn’t order pain meds) so I can try to get back into a better routine of taking them. Mostly I need to be taking them at more sensible times so they’re working when I’m awake rather than swallowing them immediately before bed and sleeping through most of the benefit.

It’s a start.

>Bullet points of life

>I’ve not written a proper blog in forever it feels like! A few bullet points of what’s new in my life

~ I’ve started a new medication. That’s blindsided me a little. I expected to leave with a prescription for something short term. And when she was saying what she was gonna give me I thought she might stick it on a just in case repeat. I did not expect a new daily med.

~ I’m planning a late birthday party to celebrate my 30th. It’s shaping up to be loads of fun and very exciting. But at the same time it looks like none of my uni friends can come which is a little disappointing. I’ll have to pin them down for another meet up.

~ My weight finally seems to have stabilised and I seem to be losing between half and one pound most weeks. Which is huge. The fact my weight isn’t going up any more is even huger.

~ A new project is in the works which I’m taking a lead on. I think it’s gonna be intense but brilliant when it comes together. In the meantime it’s a lot of (interesting) work with people I’m getting to know better. All good stuff. And today it led to the comment “October isn’t that far away” being made by others. That’s totally mind boggling if you ask me!

~ My mood crashed yesterday evening for some reason unexpectedly. I’ve still not figured out exactly why. But generally I feel like I’m doing loads, managing everything and feeling good. Which did lead to my seriously crashing energy wise on both Thursday and Friday afternoons for a couple of hours. I need to even things out I think.

♥ Emma

>Goals for the week

>It’s been a bit of a crap week and I’ve been feeling down at times, missing my meds and feeling a bit ill on and off. I do think there’s been a bit of a virus going around as a couple of other local people have complained of nausea too.

Anyway although I’m slowly pulling it back together now and have an actual proper achievement to show for today – I went back to a very badly stalled project and have got it moving again. I thought it would be good to set a few goals.

1. Take my sertraline daily.
2. Take my baclofen at least once a day (will worry about consistently taking the second dose next week, getting some in is a better goal now)
3. Work on the above mentioned project daily.
4. 1 hour total in the standing frame.
5. Watch The Lord of The Rings
6. Send emails I’ve been procrastinating about

>Missing – one blog entry

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If found please return to Emma at A Writer in A Wheelchair.

I wrote an update about the serial casting on Wednesday night but for some reason it didn’t post. I can see it in my online drafts in blogpress but it won’t let me post it. So it’ll have to wait until I go on the PC and can go on blogger proper.

Am I the only one who finds it surprising that Blogger haven’t released an app of their own or at least made the website iPad friendly?

Things have changed and moved on yet again since I wrote it and surprised me yet again. This treatment process with the Botox and the casting has been very different to what I expected. It’s also been harder and occasionally easier too. I was chatting to a friend earlier and described it as one of the situations where you know that in the long run it should be worth it and you want to do it. But in the short term you wonder why you thought it would be a good idea and have fleeting moments of wishing you hadn’t started it.

I’m not saying I regret doing this, I’m very glad I pursued it and think it’s good. The amount involved and all the ifs and buts and maybes are a little overwhelming at times, that’s all. That and I don’t think I properly considered the emotional impact before this began. My mental health issues being what they are however I’m not sure I could have done so had it even occurred to me. I’ve never seemed to have definitive things which make me down or anxious etc, it’s all a bit random. Which for me is probably a good thing.

>Several One Month Before Heartbreak Related LInks and News

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(I’ve just posted the majority of this on the One Month Before Heartbreak blog but there is some extra more me related stuff at the bottom here)

Today has been amazing for support for One Month Before Heartbreak.

Sue Marsh (Diary of a Benefit Scrounger) wrote a piece for The Guardian which appeared in Comment is Free.  We’ve been mentioned by The Guardian several times but getting a piece in Comment is Free is huge.  Amplify the eloquent voices of the disabled protesters is Sue’s piece and it’s really good.  It contains many links to specific posts on the One Month Before Heartbreak blog.  Also that article has received well over a hundred comments and although I’ve not read them all there has been some good discussion and support there.
Kaliya Franklin (known by most people as Bendy Girl from Benefit Scounging Scum) was just on Talk Radio Europe talking about One Month Before Heartbreak, The Broken of Britain and the DLA cuts.  I listened to that interview and she did a very good job of getting our points and concerns across.  Talk Radio Europe have promised us their ongoing support for which we thank them!
The petition to end DLA reform continues to gain signatures..
Most importantly, the National Assembley for Wales has stepped up to oppose DLA reform

Oh, and the new Broken of Britain logo and twibbon were revealed

There are a couple of other “in the pipeline” things which maybe happening but it can definitely be said that it’s been a good day for The Broken of Britain / One Month Before Heartbreak teams.

I’ve not personally updated about me myself and I for some time.  I’m doing well!  My attempts at weight loss are well and truly stalled and in fact my weight is up a lot which isn’t good.  And I’ve not been fitting in any exercise.  Both are things I hope to get back to next week.

I’m very tired as a result of running on adrenaline for most of the weekend.  I’ve also been very anxious today and spent part of the day feeling nauseous.  I think that might be coming down from the adrenaline of doing so much over the weekend.    The rest of this week and next week I’ll be taking it as easy as possible for the simple reason that I have to.  The sheer number of silly mistakes (e-mailing a woman and calling her Jim because I misread her name as that?? She thought it funny but so embarrassing for me) I’ve made and the level of spasticity in my legs makes that very clear.  And that’s with trying to do what I could for this from my bed!

I’ve completely lost my train of thought.  Too tired to continue.  More tomorrow!

>Random Facts About Me

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  1. I am working on several promised blog posts but only have the energy to write something fun tonight
  2. I learned how to crochet a border onto some knitting last night after several failed attempts at learning to crochet. Crocheting onto knitting was clearly the way to learn
  3. I started eating chocolate and drinking coke again ten days ago after more than 6 months without. Might have been a mistake.
  4. I really love Thunderbirds and read a lot of Thunderbirds fanfiction
  5. I’ve lost about 2 stone (28lb) this year. It’s not behind the couch, I checked.
  6. If I had to choose between twitter and facebook I’d choose twitter
  7. My manual chair is an action 3 (from invacare) with a j3 backrest (from Jay) on it. It’s about 14 months old and needs a new cushion and a decent clean.
  8. My powerchair is a Pride Jazzy 1121 with tilt in space. I got it second hand but it had been hardly used and you couldn’t tell. I’ve had it a few years and it’s battered as fuck now. I love the tilt in space but don’t technically need it.
  9. I’m going away next year for the first time in several years.
  10. I’ve already started planning some of my 101 in 1001 goals for when I write my next list in September
  11. There are 7 grab rails in my bathroom, one of which pretty much never gets used.
  12. I fell this evening (landed in/on my wheelchair and didn’t hurt myself) and laughed my head off at the sheer stupidity of it.
  13. 3d films make me feel sick. I wonder if that’s because the wheelchair spaces are right at the front at my local cinema?
  14. I’ve got a feeling an old school friend might have cut my hair on Monday but I didn’t ask and don’t have the nerve to facebook her and ask her.
  15. There’s someone else on facebook that I know where I know them from but I’m not sure who they are and haven’t asked and it’s been months and I now can’t
  16. I’m probably going to be ML (or one of the MLs) of my local NaNoWriMo group next year.
  17. I started listening to an audiobook yesterday (the first for years) and forgot how good they are for knitting along too.
  18. I have read 107 books so far this year
  19. And I’ve read 375 books since I started keeping track at the beginning of 2007 – although some of those I’ve read more than once in that time meaning the number of different books is less than that.
  20. I’m drinking bitter lemon as I type this
  21. I’m really really hoping to get Just Dance 2 for my birthday (or for Christmas)