Smiling Clare

Living Life Within the Limits of Chronic Illness

Category: 2014 Page 2 of 14

A short update…

As ever things haven’t exactly been plain sailing since I last blogged. But I ain’t gonna let that stop me! I’m managing to achieve my everyday goals most days. I can’t say much progress has mean made towards the longer-term goals so for now I’m focusing on the short-term.

I’ve been rather busy with my university course which has meant I haven’t had many spoons (much energy) to blog. But study is going well, I’m enjoying the course and it’s not as demanding as my previous module which is a relief!

Of course with Christmas fast approaching I’m going to have to carefully manage my energy supply in the coming weeks, but as always I’m sure I’ll manage. In the meantime I’m preparing a few blog posts which will be scheduled throughout the Christmas period, so hopefully I won’t be totally silent on the blog front! But it may take me a while to reply to any blog comments I’m afraid.

Tata for now!

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T320 Block 1

As predicted it’s been a while since I updated this blog, but as ever life has been challenging with normal illness on top of chronic illness, setbacks and somehow managing to keep up with studying.

Despite these challenges T320 is proving to be an interesting and enjoyable module. Block 1 covered e-business from a business perspective, so nothing too different to B203 in a sense. In fact much of it overlapped with things I had learned during my previous module.

As I write this I am happy to have received my first TMA back, with a better than expected score. My essay was far from perfect, but given it had been written while I was exhausted with a hacking cough and the general dip in health that comes from having a normal illness on top of a chronic illness I don’t think 83% is bad.

I’m now working my way through Block 2 which again is proving interesting and enjoyable. Despite already knowing quite a bit of the basic XML subject, the details are proving very interesting. I’m managing to get through the study sessions quicker than the study schedule has allowed which has given me leeway to take a few much appreciated rest days. I’m hoping that this will continue so I am able to allow myself a good few weeks off over the Christmas period!

As ever most Open University related terms can be found in the Glossary. Anything not in there please feel free to comment and ask what on earth I am talking about! I’ll try and answer when I can.

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Readjusting Goals

There comes a time after a virus, during a setback, that I have to readjust my goals. What was realistic a few weeks ago is no longer so. This isn’t an easy process to go through. It hurts to have to go back to the basics, the goals which had faded back into everyday life; I’d still appreciate that I was able to do them but I didn’t have to really think about them. But it’s something that has to be done in order to start building up to those goals I was working towards before the setback.

So with that in mind I have been readjusting my goals, creating more realistic goals for everyday and longer-term. Of course these are always subject to change. And there’s no shame if I don’t achieve all of the everyday goals everyday. There’s just a sense of achievement when I do complete one or some of those goals.

For now everyday goals include:

  • Getting Dressed. However casually, even if it be in the most pyjama like clothes as long as they’re not sold as pyjamas it counts.
  • Brush my hair. This is something that can get neglected for days on end, especially if it doesn’t ‘look too bad’. It can take a lot of energy and be quite a challenge to hold my arm up to do so.
  • At least an hour’s study a day. Maybe not all at once, always with regular rests. But to complete my degree I need to do at least this amount a day 5 days a week. (Technically I should do more but at times of illness like this the bare minimum has to suffice.)
  • Early Nights. This one is a flexible goal, but to be in bed before 10:30pm is currently desired. It allows me almost 12 hours much needed rest!

Longer-term Goals.

  • To help with the washing up at least twice a week. Currently I help when I can but it’d be nice to be able to do it a little more often.
  • To walk up the corner shop on my crutches. Without significant collapse afterwards.
  • To make a weekly trip to the market on my mobility scooter, with Mum. Even if this starts as a monthly or fortnightly trip in order to build up to it. (Currently a little difficult as the mobility scooter needs some repair)
  • To complete my degree and graduate from university. Something I’m working towards everyday!

So those are my main goals for now. This isn’t an exhaustive list. But it is a realistic one. Or at least more realistic than my pre-setback goals. Hopefully I can build up to those goals and share them in another post when the time comes and they are once again realistic.

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Poem: Just a Girl who’s Stuck in the House

I’m just the girl who’s stuck in the house
Never seeming to leave to be out and about
The neighbours never see me, when I’m ill in bed
They just see a shadow at the window overhead
Looking out, wishing I could be out there
Knowing that being in bed is all I can bear

This is not how any life should be
It feels like I’ve lost a part of me
One day I’ll find that part again
Once I’ve recovered from this ill pain

I know I’ve gained from being ill
A strength that comes from this bitter pill
For now I’m just the girl who’s stuck in the house
Far too exhausted to do anything else
I’ll make the best of what I have
It’s better than focusing on all I’ve lost.

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