Living Life, Within the Limits of Chronic Illness

Category: Goals Page 2 of 4

2017, A New Year, Old Plans

I’m sorry for being so quiet in 2016. Unsurprisingly solid study from February onwards saw managing anything other than study a little difficult and so unfortunately this blog had to take a back seat, hence the lateness of this post!

I did however achieve one of my big goals which I think I set back in 2014; on Sunday 18th December 2016 I finally made it to the church carol service! I had to use my wheelchair, and the volume level was a struggle but I did it! And I’m immensely proud of myself.

For 2017 I have a few more plans I’d like to achieve:

• Pass B301 and thus get my degree!
• Graduate from The Open University (Ceremonies are optional but I really want to attend one, just depends where and when I can book one)
• Meet some of the great friends I’ve made online through university and M.E. groups
• Walk up the road to the corner shop (or even better the tearoom!)
• Go to the church carol service again
• Redecorate my bedroom
• Start thinking about what I’m going to do post-degree

Anyway I hope you all had a wonderful Christmas & New Year, here’s to 2017 bringing great things for us all.

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2016: Bring It On!

Overall 2015 has been a good year, I’ve achieved things I never imagined. Sure there’s been some pretty terrible lows but I’ve got through them.

This past year I have:

  • Managed a weekend away, the first in I can’t remember how long!
  • Decorated the living room, it took me the best of of seven months but who counted?!
  • Strengthened my muscles, as a consequence of decorating, walking has become easier as I’ve built up the muscles while standing painting for short periods.
  • Not only passed, but got a distinction in my Open University module!
  • Baked cakes and cookies.
  • Prepared my own meals, some in bulk so they can be frozen and reheated when required.
  • Been out for a few hours each day for five days in a row without any major setbacks.
  • Spent a day as a Princess and raised £225 plus £40.75 GiftAid for Invest in ME

And that’s just the things which stand out!

For 2016 things will be a bit different. In February I begin 16 months of solid study to complete my degree. Between February and September I shall be studying at least 10 hours a week. This means most other activities will have to be put on hold as I try and complete the final two modules of my degree (Don’t worry they’re not running simultaneously! But I won’t be getting a break between modules.).

I hope to continue building up my walking so I can manage that walk up the local corner shop on crutches and I definitely plan on being involved in Team Princess again if I can. I think for everything else I’ll have to see how things go and base decisions on how well I’m doing as the year progresses. I’m not going to rule anything out since I can’t predict the future. A trip to meet some friends I’ve made online would be wonderful if it is possible. Delving into the world of dating would be another step towards doing something ‘normal’ for a person my age but I’m not sure I’ll have the energy while studying so much or the courage to go for it. We wait and see.

In the meantime I wish every reader a Very Happy New Year! I hope it brings better health and happiness to each and every one of you.

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Project Walking: A New Type of Physio

For the last few months Project Walking has been put on the back burner, I was either spending almost all of my energy on university work, coping with the loss of a loved one or simply just too poorly to attempt it. But I’m happy to say things are now on the up and I’m feeling a lot better than I have been.

Another reason things ground to a halt on Project Walking, was because the Wii Fit has been packed away while the living room is decorated. As this was my main form of building the strength back up in my legs, I’ve had to have a rethink of how to do this while the living room is being done up.

Now I’m well enough to start building the strength back up in my legs again, I’ve established a new physio routine. Decorating. An hour or two every other day is spent helping with the decorating going up and down some steps, standing and stretching and when I start getting tired or increased pain I stop. Not only does this help me with strengthening my legs (and therefore hopefully my ability to walk further) but it also means I’m helping out, doing something useful. And at the end of most days there is a little more of the room painted; which I can say I did.

Obviously there are some restrictions to when this exercise can be done; because it involves using steps it can’t be done when there’s no one else in the house. It also depends on the day, if I don’t feel too good I don’t do it. And often a days rest is needed in between decorating days; not so much because I’ve overdone it but to make sure I don’t overdo it and give my legs a chance to recover a bit. I don’t want to push it too far too soon.

It may sound a bit of an odd way to build up my muscles and I don’t want people thinking I’m well because of what I’m managing. I’m still moderately affected by M.E. The days I do decorating I don’t do much else, the majority of the afternoon is spent resting (or dozing). But I know if I want to get back to walking up the road I need to work on my leg muscles, and if I can help my family out along the way it’s a bonus. I depend on them so much it’s nice to be able to give a little something back, even if it is a slow process. And so far it seems to be working; I still struggle to get up the stairs some nights, but it is slowly getting a bit easier. Now that’s something positive to focus on!

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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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