Smiling Clare

Living Life Within the Limits of Chronic Illness

Category: Living with ME Page 2 of 13

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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In recent weeks I’ve been feeling overwhelmed and a little lost. I had a massive to do list and no enthusiasm to make a start on it but I’m happy to say I’ve managed to tick a good chunk off that list. I don’t know what the problem was, why I felt so unenthusiastic about starting these tasks, all I know is I felt more exhausted than normal having had a virus and so I settled into a quiet routine of not doing much at all. Until one Sunday I decided it was time to push myself; so I finished painting the living room (I only had a small patch left to do). I found I could do it, I felt better for doing it and slowly but surely I’ve been ticking things off my to do list ever since.

I think I’d fallen into the trap of resting because I’d had a virus and wasn’t sure what my limits were any more. A virus can knock me right back so I just have to focus on the basics and it can be hard to determine exactly when to start pushing again since recovering from it can be so gradual I don’t wake up one day feeling remarkably better like you generally would.

But since that Sunday I’ve discovered the virus hasn’t damaged the progress I’d made M.E. wise and thus I am still building on the foundations I’ve created during this year. I’ve come so far from struggling to walk even aided round the house at the beginning of the year to walking mostly unaided with the help of the furniture at times! Climbing the stairs has become a lot easier although I still have nights where it is a struggle.

I’ve been out and about a lot lately in the car and using my wheelchair and I’ve been pleased to find I’m managing more outings with no significant payback; I’ve been exhausted afterwards but a good night’s rest has actually eased that and the next day has been okay.

I’m working towards completing most of the goals I set out for 2015 and am pleased with the progress I’ve made. My walking had improved significantly even if I have yet to take that walk to my local corner shop; I did walk from my dentist surgery to the pay & display car park on crutches though. (It’s not what most people would class as a long walk, Google informs me it’s just 0.1 miles and should take approximately 2 minutes, of course it took me longer than that but I did it!). As for baking I’ve been doing the odd bit here and there with assistance either from a friend or family member or the food processor! I’m regularly making meals to freeze as well. Next week I shall be helping bake cookies and mince pies galore, as well as making that all important Christmas Pudding Ice Cream!

Now if I don’t get a chance to post again before Christmas, given it is a busy time of the year with family, friends and getting enough all important rest that is a strong possibility! I want to take the chance to wish you all a Very Merry Christmas, I hope you all have a lovely time and are able to enjoy yourselves in whatever you manage to do!

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So I’ve been a bit quiet…

Wow time flies when you’re having fun or just busy! My hopes of blogging once a week during the summer must’ve been a bit optimistic, so I apologise about that.

Things have been going pretty well of late, sure I’ve had my bad moments but on the whole I’m managing to keep things pretty stable. In recent weeks I’ve had a few days out which have been absolutely lovely; there’s nothing quite like getting out of the house!

I’ve also had a few short trips out on my mobility scooter; not far but it’s a start, besides at one stage when I stopped it wouldn’t start again without switching it off and then on again so I’d rather not go too far until I’m certain we’ve fixed that problem!

Project Walking and the decorating physio is going well, getting up and down the stairs is becoming easier as my legs get stronger. Hopefully I’ll be able to embark on a walk up the road on my crutches in the near future and see what happens.

I’m having to restrict the time I spend on social media and generally at a screen which obviously helps account for my blogging absence too! I’m finding cutting back on these things is actually helping me do more with the energy I’ve got. Although it is a little lonelier seeing as most of my friends and social life is online. But at the same time I’m enjoying being able to do a bit more around the house.

In other news I turn 23 next week. And I don’t know how that happened! It doesn’t seem possible that a year has passed since my 22nd birthday. I currently have no plans for my birthday but am wondering if to do another JustGiving fundraiser like I did last year. Let me know if you think it’s a good idea and I’ll go about setting things up!

I’ll try and blog again soon, especially if I decide on some birthday fundraising again! In the meantime I hope you’re all as well as possible! Take care!!

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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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