Sunday, 4 December 2011

It's getting better all the time

This has been a good week in many ways. I have the new wheelchair, which is light and comfortable and supportive, I've had another driving lesson, which I enjoyed as much as the other two and I've made a bit more progress on my DLA form. I feel like I'm finally making progress back towards coping at med school when for so long I've been going in completely the other direction.

Progress looks different to how I'd imagined.

When I decided to take this year out I was still fixed in keepingoing mode. In my head I was getting up and going into placement every day, and the problem was that it was leaving me knackered, miserable and ill. The objective reality was very different. I've struggled with the timetable of clinical placements all the way through uni for various intersecting reasons, but this last year especially.

My attendance and learning were enough that I'd been signed off from placement (up until the last one which I don't think I would have) but I felt very much like I was just going through the motions. I was in the hospital for the least amount of time that I could get away with, and even though that meant I was getting a lot of studying done, my confidence around patients had gone. Indeed, until I started using the 'chair just before I left most time on the ward was little more than an exercise in staying upright/conscious.

I don't think you ever fully realise how bad something is when you're inside it. I had in my head that I would be fine once I'm working part-time. Now that I've got a realistic idea of just how little I can manage if I'm pacing to a consistent level I know that it's going to take a lot to get me back to uni in any kind of a healthy way. And it needs to be healthy. I will not sacrifice my health, or the safety of my patients, to hold onto a dream that's not meant to be.

It's going to take :
- help with my morning routine (for example dressing/brushing my hair, moving around because I'm more fainty/fall-y, making coffee/breakfast etc)

- a short commute in accessible buses that go pretty much door to door or a car and a parking permit that will mean that I can stay in a disabled bay all day (and not only for the 4 hours allowed by the private car park people)

- my wheelchair with adaptations to make it work friendly, such as a holder for an alcohol hand gel dispenser and somewhere to store tuffie wipes for my push rims, a trabasack (I'm getting once for Christmas!) for carrying things like mini sharps bins and needles/syringes etc, and a big sign that says

- a cool vest - wards are kept warm which makes my fainting and slurrydrunkyshakyjerky spells a lot worse plus compression stockings and a heart rate monitor

- reasonable adaptation to placement (such as my supervisor contacting me at least 2 weeks in advance of each month-long placement and providing a timetable, only being placed at hospitals within a short commute etc) which are enforced by the medical school

- being really assertive about my access needs, sticking to a routine, taking my meds etc

- and for studying purposes a laptop I can carry, with voice recognition software (this post has taken 9 hours over 2 days to write, as do most), and a chair/table configuration that works

Baby steps of progress are great. They are much better than going backwards. But to sort all of this out will need : a DLA application, social work assessment, application for NHS bursary, DSA assessment, passing my driving test and some hard dealings with the medical school (I think it's going to get to the point of reminding them of their obligations under the DDA via a lawyer...)

There's still so much to do, and it's all exhausting - and all this need to prove that there's something wrong makes me doubt myself over and over again.

At least now I have a realistic picture of what managing my own care is going to take.

Now I just need to eat this elephant (not really, poor elephants!) one nibble at a time...


  1. How the act of changing location from one place to another gives results in the same way, progress can be defined as hardwork.

    Disability forms


  2. Loving your new wheels!
    Hope you can get the computing stuff sorted soon - I had no idea it took so long for you to prepare a post by typing. Now I do, and I think that's a good thing.

  3. ... I mean it's a good thing that I now know... foot... mouth... ;-)

  4. Sounds like a plan! I don't know what your med school is like compared to mine - but despite them taking approximately a year to understand that MH problems don't just go away, they have been very good at giving me placements that either keep me in the city so I'm stable in a flat, or close enough I can commute back for doctors apps/counselling etc without missing too much. I think it would be ridiculous for you not to be within easy commuting distance, or somewhere totally set up to meet your needs if that wasn't the case (and as most DGH's aren't set up to meet patient needs let alone students.......)

    And I know what you mean when you say you don't always realise how bad things are until you get a few months/steps away....I literally cannot believe what things were like when I was illest last year, let alone that no one realised, and how much effort that took. Good luck with getting everything in place, xxchar at ltbs.

  5. @Robyn : s'ok, I got it ;) do not mean to imply that I spent 9 hours of continuous effort to produce one blog post... more that I can't do it all in one go so it takes forever. Luckily my brain does not move much faster thna my hands ;)

    @Char : my med school have been v good in terms of pastoral care but *awful* in terms of making concrete adaptations. I'm currently working with a lawyer (aka my dad) to prepare to threaten them under the DDA. No fun, but necessary I think.

    I'm the same when I think back to when my depression was worst. Such a nightmare time =[ Sorry things are rough again for you at the minute, am thinking about you xx