Living Life, Within the Limits of Chronic Illness

Tag: 2015 Page 1 of 7

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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GET versus GET

I am in no doubt that this post will be a controversial one. It’s a post which risks a lot; it could be misunderstood. But it’s a post I feel I need to write. Before I continue I want to make a few things VERY clear.

I believe M.E. to be a physical chronic illness. I do not believe it to be all in the mind in any shape or form. I don’t believe it matters what it is called: ME, CFS, SEID, PVFS they are all just names for an illness with a wide range of symptoms no one really knows the cause of. I also do not believe Graded Exercise Therapy (GET) or Cognitive Behaviour Therapy (CBT) is the answer.

So why am I writing this post?

In essence it’s because I believe a form of graded exercise and even positive thinking can be beneficial. I’m not saying it’s a cure, far from it in fact, but I think it can help if done in the right way.

I did Graded Exercise Therapy in the early years of having this illness, and I can safely say the way it was implemented worsened my condition significantly. I trusted the doctors knew how to get me better; if a doctor said exercising would cure me I’d believe them and do it, anything if it meant I could be a normal teenager again. And I did begin a course of GET, that is until the physiotherapist put a stop to it as they saw my physical symptoms worsening. The exercise prescribed was too much; like running a marathon you haven’t trained for.

Now that form of Graded Exercise Therapy certainly isn’t beneficial for people with this illness.

However done in a different way I think graded exercise can be helpful, if not in aiding a full recovery, in aiding a partial one. I don’t shy away from exercise, but what I class as exercise and what a conventional person would class as exercise are probably two very different things. Exercise can be as basic as a few simple stretches done lying down, getting out of bed, walking to the bathroom, going down the stairs in the morning and back up them at night; it doesn’t have to be a walk round the block every day, or a five mile run.

Jumping straight into a walk round the block can inevitably worsen the symptoms of ME; the body hasn’t got the energy reserves it once had, hence the overwhelming fatigue, pushing through the fatigue to embark on exercise of that nature only serves to worsen symptoms. The trick is to start slowly, and build up gradually.

Starting some basic exercises; stretching, going down the stairs and back up them once a day, whatever seems appropriate, stopping before the overwhelming fatigue hits and sticking to that basic exercise routine for a week or two if no ill effects are had is a form of graded exercise I believe works. If ill effects are felt the level of exercise is dropped down a bit, if the routine can be kept up for two weeks without any ill effects look at increasing it slightly. One day at a time, depending on the symptoms of the day.

There are no set deadlines for completing the exercises, it’s simply a case of listening to the body. Any warning signs that the exercise is too much; for example worsening pain or fatigue, stop and try again the next day perhaps adjusting the routine slightly to make it achievable. Slowly but surely the amount of exercise that can be done builds up – gradually – and doing everyday tasks becomes easier.

A key thing to note is that some, if not all activities can be classed as exercise in some form; particpating in conversation exercises the brain and senses, walking to the bathroom, having a shower, even sitting up can be categorised as exercise with this illness; it all depends on the severity. They all use energy and any physical movement like walking to another room can be classed as exercise. It’s important to remember that; using all the energy in the body doing exercise, like I did when I did GET at the hospital, means there’s no energy for those everyday tasks that have to be done; you have to get to the bathroom somehow and it’s going to take energy!

I also believe positive thinking can be beneficial for people with this illness but again it’s not a cure. A positive mindset and belief that one day things will be better are key to not becoming depressed, entering a cycle of believing doing something will make the symptoms worse. I’ve noticed approaching things with a positive attitude does tend to lead to more positive results; even if the next day is a bad one, approaching an activity or whatever with a positive attitude and open mind leaves me with better memories of the day before.

Not going into an activity or situation believing I’m going to suffer for doing it is a tough habit to break, especially when the chances are the symptoms will worsen after doing it. But there’s no point in writing the story of the next day when we can’t predict the future. Of course there’s every likelihood the symptoms may worsen and the next day will be a bad one, but on the other hand there’s a chance it won’t be as bad as the mind is imagining.

Focusing on the present and not on the future can really help.

So there you have it. A controversial post which risks a lot. I honestly believe graded exercise and positive thinking can help in the management and recovery of this illness whichever name you choose to use for it. Perhaps not in the same way as it is implemented by physicians, and perhaps not in the same way as the research presented in the media suggests but in some forms it can help.

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Bloggers Block?

It’s been a while since I last blogged. I don’t now why but I just haven’t been able to find anything much to write about; it’s like I’ve got writer’s block when it comes to blogging! (Should that be termed Bloggers Block??) But here I am giving it another a try…

So I had a fantastic birthday a little over a month ago now, I was overwhelmed with messages, cards and gifts, it was utterly amazing. I’ve tried to make sure I thanked everyone who sent something but I can’t be certain I did; so if you’re reading this and didn’t get a thank you from me I apologise and I take this opportunity to say thank you!

Not much has changed since I last wrote anyway; I’m still having good days and bad days, getting out on the mobility scooter occasionally and helping with the decorating when I can. I’m struggling at times with increased noise and light sensitivity which I’m unable to pinpoint the cause of.

I’ve got a few projects lined up in the coming days and weeks; card-making, cooking and of course the continued decorating to name a few. But I am being careful, trying my best not to overdo things and pacing as well as I know how to.

Anyway I hope to find a way to start blogging again; I just need to find something I can write about easily, something where the words start flowing again. Fingers crossed that happens soon!

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