Hello, lovely chums!
Once again I find myself in the position of apologising for not having posted in a while. And boy, it has been a while. But, as many of you know, I don’t believe in writing for the sake of it and will only share on this blog when I have something that I really want to say.
In the coming months, there will be a lot to write about, as I’m getting ready to embark on a really exciting project that is targetted specifically at young people with chronic illness. I can’t wait to share more information with you guys, but it’s still in very early stages and would be far too soon to spill the beans!
There’s not all that much to report on, except that I successfully managed to dislocate my knee while I was in Paris and have been uber-resting it to make sure it heals properly. I’m used to subluxations (so many), but bloody hell, dislocations are the worst! Fingers crossed in a couple more weeks it will be better!
Today I wanted to pop back in to share my experiences of studying with a chronic illness.
Last year I posted that I had decided to make use of the whole ‘I probably shouldn’t be at work’ thing by starting a Masters of Laws with the Open University. I’m about 20 minutes of work away from completing my final research paper of my first module (I’m totally not procrastinating right now…), and I thought I’d tell you how it went and some things that I learned.
1. This is the first thing in about five years I haven’t had to quit because of my health. And I’m proud of that
Before I get into the challenges, I just wanted to throw that out there. That’s a really big deal, and I’m trying to get better at acknowledging ‘little victories’. I’ve had to quit school, internships, jobs, missed out the best parts of life-changing opportunities and all kinds of skills classes because I haven’t been well enough to keep up with them. Yes, choosing to study again has been far from easy, but I think that I’m finally getting to grips with true resting and balancing things a bit more. Managing my feelings of unfulfilled potential and not being able to do the things I want still plague me on a daily basis, but my refusal to be ‘a depressing sick person’ keep me going. The thing I worry about a lot these days is whether my ability to do more and that I feel (relatively) better is due to the fact that I’m making sure I do not do too much. This is something that I’ll definitely be writing about in the coming months as things start to get busier again.
2. Choosing the Open University was the best decision I could have made
When I thought about getting a law degree, I did look into London-based schools like BPP. However, after phoning them up, I realised that they weren’t as flexible as I needed them to be. With the OU, I’m able to work pretty much as and when I want to, and with just one module to take on at a time, it meant that it wouldn’t become utterly overwhelming. I did have issues with my first tutor who was extremely unresponsive (waiting weeks often meant that I’d wasted my ‘good days’ where I was able to work). Also, when I told her that I was struggling to get some stuff done (winter time is particularly bad for me) because of my health, she suggested reconsidering my priorities. This made me mad. But, the OU team are great, and within a few days, I had an incredibly lovely new tutor who was extremely responsive and supportive, which made the whole experience that much better.
They also have a really great disabilities team and are able to do lots of small things to make life easier while studying. I received my course books all ringbound to make them easier to hold, as well as all the online materials printed off (several packages arrived full of papers!) because I find it easier having things away from the screen to prevent headaches and fatigue.
I was given an extension on all three of my papers (I didn’t think I would need one for the last one, but the knee dislcoation came at a bad time!) which helped take a lot of the pressure off, especially when I was having particularly bad days. Unfortunately, for my ‘examined’ end of module paper I can’t get an extension. That made me really stressed out for a bit (I shouldn’t get stressed), especially since they’re going to be doing loud work on my building this week, but I managed to get it all done. It’s probably not the greatest. But it’s done.
Which leads me to…
3. My brain doesn’t work like it used to
This has probably been the biggest challenge for me. I never really learned how to study when I was younger. I had an excellent memory and was really quick. I was smart but academically lazy. Now my brain fog and fatigue (exacerbated by my pain) makes everything infinitely more difficult than it ever was. I beat myself up about the fact that it takes me longer to do things, and that frustration can become counter-productive and overwhelming.
It’s not that I find this stuff difficult, it’s that I can’t sit down and just bash out an essay in one go anymore and I need to take a lot (a lot) of rest breaks. Things need to be done over much longer periods of time. I struggle with the fact that I don’t produce things of the quality that I know I’m capable of, and I feel like I’m letting myself down. Everyone says I’m too hard on myself. But meh. Shh.
I guess it is what it is, and I’m trying to find ways to adjust to that.
4. I didn’t quit
I can’t tell you how many times, especially at the beginning, that I was ready to quit for all the reasons mentioned above. Especially during a bad flareup. But my parents wouldn’t let me, and I spoke to my favourite professor from university (thank you, K), and I think without the kind words that she said to me, I would have quit at that point.
I’m one of those people that is generally confident in their ability. I know what I’m capable of and what I can do. But chronic illness is cruel. It can take away so much from you that it starts to make you question everything. And that’s hard. And something that constantly needs to be balanced with trying to go out and achieve things.
Knowing when to quit and why you’re quitting something is really important. I chose the OU because it was the least physically demanding and flexible course I could do – something less easy to justify quitting. I had to stop working the way I was because it was too much, as was the coding course I started last year, and for my health I needed to stop.
5. I did it (…once I submit this paper)
Ok, so I’m not getting A’s on my papers, it’s taking me significantly longer than a few hours to do everything and I’m having to accept that things are different and more difficult now. But I did it. And that’s a big deal. Yay.