Tuesday 25 October 2011

When concentration wanders off...

This blog post came out of a conversation on twitter about the difficulty of motivating yourself / getting work done when your concentration is bad for whatever reason (fatigue, anxiety, distraction etc). This is either going to make me sound hideously preachy, or militarily organised. I am neither. These are the techniques that I have learned over years of brainfog and depression, for actually managing to get anything done. In this way I am having quite a productive day despite the fact that my sensory processing today is simulating being wrapped in cotton wool underwater.

They give me a framework in which I don't need heroic amounts of motivation to battle through the fog. They might seem intense at first, but structure has really helped me, so it's worth a try. If you've got someone to help you hold yourself accountable for what you get up to over the day, all the better.

The very first thing on the list is to give yourself the best basis for concentration. As far as you are able get plenty of rest, eat enough and healthily, get some fresh air in your lungs, manage pain and anxiety etc. We are not machines, and as such to stay active our body and brain needs varied stimulation (why not switch between cleaning the bathroom and studying infectious disease for the ultimately engaging Saturday morning?) and regular periods of rest (every 90 minutes for me) and re-fueling (leave your desk to eat lunch and you combine the two).

Also identify your primary distractions, and deal with them. For example, when I'm writing a blog post, my natural inclination is to hop between tabs to twitter or my blog reader, where I inevitably forget was I was doing in the first place. To manage this, I have this open in a separate browser window, and every 10 minutes I give myself 5 minutes of browsing time, with an alarm that goes off at the end to remind me to start again. I find silence causes me to wander off into my brainbox, and I can't resist the urge to sing along to music, so I am writing this to a background of radio 4. If your distractions are worries, or anxieties, try taking 5 minutes to write them all down before you start work, as a symbol for setting them aside.

Realise that different days / moods suit different tasks. Today's brainfog means that anything creative / requiring sustained thought is out, but practical target-driven tasks are fine (email this question to such-and-such, book cinema tickets, write blog post from these notes, bullet point mobility issues for DLA application).

Make a to-do list, split into topics (such as current placement / revision / audit). Separate any big jobs into sub-tasks (such as write essay plan / draft introduction / run journal search). Assign each task to the category now, soon or sometime (I do this by highlighting each category in a different colour). Write a date/time to complete for everything in the 'now' category, and write a date/time to review the list.

Don't let this take any longer than 10 minutes. You can always add things later.

If you have a period of time (say an afternoon) and you have several tasks on the list for that time, there are a couple of ways to approach things.

Think about balance between activities - sometimes it's easy to group similar activities together, like getting several phonecalls out of the way in one go, but sometimes you need to break things up - so writing an essay in half an hour bursts interspersed with 10 minutes of cleaning the bathroom

Are you particularly dreading anything on the list? if it's a short activity (e.g. a phonecall) do it first. Then give yourself a reward - a piece of chocolate, or 15 minutes rocking out to the Beatles. If it's a longer activity (like cleaning the flat or writing an essay) spend 10 minutes assembling everything you need, then 20 minutes doing something else on the list. Then come back to it and spend 20 minutes doing an overview (writing an essay plan or doing a quick tidy round of the whole flat) and 10 minutes doing something else on the list.

Take a break, make a cup of tea, and then spend an hour getting as much done as you can (imagine you only have an hour to do the whole thing). If you find yourself getting too bogged down - spending ages tidying one little drawer, or over-policing and re-editing one particular sentence - take a deep breath, move to a different room / paragraph and keep going. You can come back to the detail later.

I know that it sounds brutal, and impossible, but getting into the habit of finishing the big picture first makes tasks seem so much less daunting.

If it's an essay, aim to have a general draft of the essay done within the hour, even if some paragraphs are only sentences or bullet points. Then work out how much time you have left to work on it, and split that time up between each paragraph / section, filling in the detail. Again, if you get too bogged down, stop and come up for air.

If you get to the end of the time period, and you haven't finished the tasks on your list, don't panic. Think about the now/soon/sometime model, decide when to do it, and then mentally set the task aside until then. Use this as a learning experience - it will help you to be more realistic about what is possible to get done in a given length of time. If you are constantly running out of time for the tasks you have to get done, you need to have a serious think about whether you have taken on too much.

Remember, it's always better to tell people early on that you won't get something done, rather than in a panic at the last minute - this goes for uni deadlines, jobs lists on placement, cooking dinner for your flatmates.

For studying, rather than writing, I use a slightly different technique. This is much more personal, and depends a lot on what you're learning, and how you best absorb / remember information. I'll write about that a bit tomorrow maybe.

Thursday 20 October 2011

On spirals and balancing acts

One of the main reasons that I took this year out is because my health and mobility have got gradually worse over the last few years, to the point of decompensation - where the last small changes have made a huge, huge difference. I can see quite clearly now that I was at the point where poor health making my studies much harder and more energy/time consuming, were taking away any time/energy to make any positive changes, spiralling downwards in ever decreasing circles.

I have already noticed the benefits to my health of having been able to step out of this spiral. Through having my sleep out for the first week, I now have a fairly decent idea of how much sleep I currently need. I've also started to learn how to pace my activities - to try and level out how much I'm doing each day to avoid energy peaks and troughs - and started to keep a note of what I'm doing and how my energy is as the start of working out my baseline.

The most dramatic change has been in my autonomic symptoms (nausea, dizziness, fainting, temperature dysregulation etc), partly because I'm no longer exhausted, but also because I've had time to focus on increasing salt and fluid intake (it's not as simple as it sounds), on eating small meals more frequently (big meals make all the blood go to my tummy, which means there's not enough for my brainbox), on having proper rest time in the afternoon when I would normally feel worst.

I am relishing the time to get to know this new body of mine, with its new strengths and new weaknesses. I am learning to listen to my body. It is not easy, and I am so far from done (will I ever be done?). There are some things that will get better with some time and love and attention, and some things that I need to learn to live with.

But this, in some ways, was always going to be the easy bit - juggling meds, learning exercises, knowing when to rest, finding techniques to minimise symptoms. The difficulty comes next year when I have to start factoring medicine back into the equation again.

That is why my sole aim for this year was not to sort my own health out. It will all be wasted if the med school will not live up to their responsibility to make reasonable adjustments for me. If the don't, then once again everything will spiral down.

They don't seem to understand that not only do I have less energy than other folk to start with, but that I also have to expend a lot of time/energy to keep myself healthy - doing physio, going to doctors appointments - AND that everyday tasks take more energy than they take other folk.

The best example is that when I asked to be placed at one of the 3 hospitals within 15 minutes of my house, they said that I could use the hour long journey to placement to rest. They fail to see that travelling is very energy intensive for me, so it's not just that I lose 2 hours of a day that already effectively has less hours in it but that I then lose more potentially useful time because I am too tired to use it.

Things will be easier when my general health is a bit better in various ways, when I can drive so that it will be less energy draining to get around, and when I am more used to being in this body and to using the wheelchair. BUT It will not get to the point where I can do med school without adaptations, because being healthy will take a lot of time and energy.

I'm sorry if this is a bit circular. I'm still trying to find a way to explain this to the medical school, and actually to a lot of other people. And to the bit of my brain that thinks that prioritising my health is selfish, even though my logical brain knows full well that I can be no use to anyone if I don't take care of myself - AND that I don't need to justify my worth in terms of a capitalistic model that would have the only important things a person can do being those that can be assigned a monetary value.

If you've made it this far, then I would suggest you follow it up with a much more coherent post from Wheelchair Dance, which spoke so poignantly to me about how hard it is to bear the burden of self love when a disabling society tells us that we are worthless and broken.

Blah blah blah, crunch, crunch, thud. <

Wednesday 19 October 2011

GP Bingo

If I made a bingo card to entertain myself at GP appointments it would include the following :

- failed attempt to pronounce Ehlers-Danlos abandoned and replaced with Hypermobility bonus points* if accompanied by mimed quotation marks (oh, believe me, on more than one occassion)

- "23 is very young to be taking such strong opiates" or "if the painkillers are causing side effects, you should just stop taking them"

- referring to my partner using a male pronoun

- telling me that a mobility aid will reduce my mobility

- "a lot of people are hypermobile and don't have any problems"

- use of the word 'just' in the context "you 'just' need to exercise more / take ibuprofen / take paracetamol / lose weight / go swimming / do your physio / try and ignore it"

- "it's normal for girls of your age to faint"

- the first question after giving a detailed description of a symptom, and how it relates to EDS being "how's youre mood?" bonus points if asked by a GP who refused to prescribe medication / refer to psych when I actually was depressed

- "at least it's not RA/a structural problem in your heart/something more serious"

- suggested use of supplement (glucosamine being the particular favourite)

ETA one of my favourites

- "you can't have that, it's really rare"

However, if the GP ever actually examines the relevant system, asks me a question / shows some sign of knowledge about EDS, or is the one to suggest a specialist referral the bingo card becomes invalid. This has yet to happen.

*In my version of bingo there are bonus points. It makes life more exciting.

Monday 10 October 2011

Week 1 in summary

I spent last week sleeping a lot, listening to old BBC Ouch podcasts, live tweeting * the committee stages of the Welfare Reform Bill in the House of Lords at #wrb, reading a most interesting book about the intersection of queer and crip theory, making sure the new-and-beautiful wheelchair has in fact been ordered, eating a lot of cake, defrosting the freezer twice and consequently shopping around for a new one online, darning my socks (no joke), hopping around the blogosphere adding to my blog reader, making a giant to-do list of all the bits and bobs I have to sort out this year and making another to-do list of lovely things I could do this year (which so far includes visiting lovely best friend often, learning to make good bread, making some pretty craft / sewing things and learning some BSL).

In short, I've had a week of holiday. Want to know the best bit? This week is a week of holiday as well! After that I'll be getting on with that giant to-do list...

*live tweeting = tweeting what happens as it happens, in this case because so many welfare reform campaigners are unable to access the video feed (for example folk who are D/deaf/HoH, folk whose internet doesn't do streaming, folk who find it hard to follow what's happening because of fatigue etc).

Tuesday 4 October 2011

Where I'm at

Today I was supposed to start what would at one time have been my dream placement - A and E at a big hospital which is the trauma centre for my city. Instead, Beanie and the rest of my year have started new placements today and I am at home.

At some point last week I realised that I have cried every day since we started back from summer break. There was so much to organise, and so many deadlines and forms, and so little support. The prospect of FPAS applications sneaking in on top of it all was quite dreadful and impossibility confusing. And then one evening I was talking to a friend and it suddenly seemed like the most senisble idea in the world. I take a year out to deal with a lot of the paperwork, to get used to life as a wheelie, to try and find myself some health again.

It was actually suprisingly easy to sort out. Although my disability advisor completely blew me off. I don't think she really gets me. Do most uni disability services have only non-disabled advisors? It's really difficult to work with...

It's starting to feel quite real, now everyone else is at placement, and I'm sitting here making plans for my time. My friend's have been generally quite positive and supportive, but I have a feeling that the med school will ignore me for a year and then continue to ignore my requests for reasonalbe adaptations. I'm keen that they don't see this year as me-getting-better so they don't have to sort anything out. Unfortunately when I tried to raise this I got the impression that this is exactly how they see it. Still, lovely pastoral care doctor is returning to work soon, so I hope to have an appointment pretty soon to discuss this. I'm starting to ponder whether threatening legal action would be an appropriate course of action if they continue to refuse.

They need to stop ignoring the concerns and needs of their disabled, sick and carer students. I just don't know how to make them listen.