Living Life, Within the Limits of Chronic Illness

Tag: 2015 Page 6 of 7

A Holiday!!

I still can’t quite believe I’m writing this but at the end of March I managed to get away for the weekend. I haven’t been away from home like that for over five years; it’s been so long I can’t remember the year of our last holiday! But this year we finally managed it again, and it was brilliant!!

Sure there were some minor issues; we got lost on the way there, I found the bed too firm, the shower was inaccessible and I wasn’t well enough to do anything but lie in the apartment during the evenings. However it was great to have a change of scenery and some sea air!

We only ventured off Butlins site once and that was a bit of a mistake; a three mile walk (wheel) to the centre of Skegness and three miles back in wind and rain wasn’t the best idea! But what holiday would be complete without a hilarious story like that?!

The site itself was really nice, and most importantly of all very wheelchair friendly! I managed to get out and about during the days during our stay and took quite a few pictures despite the wind and rain.

I underestimated just how much good a change of scenery could do, sure the journey was tiring (and slightly stressful when we were lost!) and I didn’t get much restful sleep at night but that didn’t seem to impact on my health too badly. And the payback afterwards wasn’t as severe as I had expected.

For years, I’ve believed holidays were out of the question; based on how badly I coped (or should that be didn’t cope?) with them during the first few years of being ill. Despite the fact we had to take a lot of additional stuff and the few minor issues I mentioned, this one weekend away has proved a holiday is manageable! Overall I had such a fantastic time I’m already looking at places we could go next! Now that’s something I didn’t foresee happening!!

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The Princesses and M.E

Last year a brilliant group of friends dressed up as Princesses for M.E. Awareness day, at the time I was invited to join in by the Queen of the group who organised it all but unfortunately I was unable to given everything that was going on in my life at the time. This year I’m proud to say I’ll be joining them on May 12th!

The aim is to raise money for M.E. charities; that’s right not just the one charity, we’ll each choose our own charity to fundraise for! Of course some of us might pick the same one but they’ll be a few different ones mixed in. I shall be raising money for Invest in ME as it’s a charity I feel is doing a lot to aid research into ME.

I’ll be posting photos of a Princessified me on all my social media accounts on the day and where possible I’ll be tagging Invest in ME and their fundraising account Let’s Do It For ME so the photos and event can be spread as far and wide as possible.

I’ve set up a JustGiving page: https://www.justgiving.com/PrincessClare or you can donate via text by sending PCJW78 followed by either £1, £2, £3, £4, £5 or £10 to 70070 (For example PCJW78 £3 to 70070) You can find the pages of other UK based Princesses on our team page: http://www.justgiving.com/teams/teamprincess

For now I need to get on with sewing sequins onto my knitted crown ready for the big day!

If you want to know more about The Princesses and ME check out the Facebook page or this post on Queen Sian’s blog!

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The Question Of Why

I apologise for being quiet of late, my health has thrown me a few challenges but I’m getting myself back on an even keel now.

There are times I’m hit with a sense of disappointed. A feeling of ‘what’s the point in doing this degree?’ Not because I’ve become disillusioned with the course. Not because I don’t want to do the degree. But because everything has gotten so much harder again.

Why am I pushing myself to do this when essentially it’s unlikely I’m ever going to go into a career which requires the degree? What’s the point?

Well I’m going to answer that question here today, and hopefully be able to look back at this post whenever I’m questioning my decision to do a degree.

I’m doing this degree for so many reasons. To gain a qualification. To prove to people I have got the brains despite being ill. To prove to myself I can manage the demands of education. To prove you haven’t got to just give up when diagnosed with a life limiting illness. To gain knowledge and experience which will hopefully help me find a job. To gain the knowledge to be able to set up my own business if I can’t get a suitable job.

There are so many reasons I decided to embark on this degree journey, and yet I often find myself questioning myself. When my marks drop because my health has declined. When all I seem to be doing is sleeping and studying. When I read the same sentence from materials over and over again but it won’t register in my mind because of brain fog. When headaches leave me unable to even contemplate studying. When sitting up becomes such a challenge studying has to be done laying down. These aren’t the usual challenges of studying for most people, so how do you deal with that?

Friends and family are an amazing support, as is the Open University Student Association via social media. They manage to pick me up when I’m feeling down. When I’m gutted I’m not submitting my best work, it’s ‘only’ the best I can manage with my health the way it is. The reassuring comments of “you’re trying your best and that’s all that matters” work wonders at putting my mind at ease. The written cries of “You can do it” when I feel like giving up, boost me up and give me the courage to continue.

For the most part family and friends are the driving force keeping me going when things get tough.Like I said, they pick up the pieces and encourage me on when it seems too difficult to continue with my degree. But there is also a part of me not prepared to let my illness force me to give up anything else; it’s forced me to give up so much I used to enjoy and stops me from doing lots of things people my age experience. I’m determined my illness will not prevent me from gaining a degree, at least not without one heck of a fight!

That determination of not letting my illness win drives me on. Even when times are tough, I’m reluctant to give up any more of my activities due to this illness. Instead I tend to adapt them to how I am. This includes studying. The trouble is I then have to deal with feeling guilty that I’m not dedicating enough time in my degree; I know I’m dedicating all the time I can without making my illness even worse but at the same time the perfectionist in me feels guilty about it. That’s something I’ve had to get used to.

So for me, the way of dealing with the challenges I face is adaptation, determination and most importantly of all support from my friends, family and the Open University Student Association. Without them I don’t know where I’d be right now so this post also stands as a MASSIVE THANK YOU to all of them who’ve picked me up when times have been tough.

I’d love to know how you cope with the challenges you face, feel free to leave them in the comments or tweet me @SmilingClare

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A Little Step Backwards

Things had been going really well with my health and studies. Ok so my marks haven’t been their best for this module but I’m on track to pass which is all that matters after all. But these past few weeks have seen my health take a bit of a nosedive.

A virus and dizziness on sitting upright have left me unable to sit at my beloved desk for very long at all. So I’m back to studying on the sofa…for now! I’m determined it’s just a temporary thing, I miss working at my desk more than I ever imagined I would. And relaxing on the sofa after studying there is rather more difficult than I once found it to be; probably because I’ve got used to leaving study behind at the desk. But like I said it is only going to be a temporary solution.

I am going to get myself well enough to work at my desk again. Somehow.

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