Tag: 2016 Page 2 of 4

What is a low energy activity?

On 2nd May 2016

If you’d have asked me that 10 years ago I’d probably have said watching TV, having a shower, reading a book, doing homework, playing on the PlayStation. I’d also have said high energy activities were walking to school, going on the dance mat, walking into town, playing sports etc.

But I’d have been wrong; or at least I’d be wrong about what a low or high energy activity is for a person with chronic illness.

You see for someone with chronic illness even simple tasks can be classed as a high energy activity. Walking from one room to another. Sitting up for ‘long’ periods (sometimes a long period can be as short as 5 minutes). Showering. Dressing. Watching TV. Having a conversation. Using a computer. Drawing, writing, painting. Studying. Making a cup of tea. Making a quick snack. Knitting. And so much more.

Therefore low energy activities are hard to come by; listening to music, colouring in a colouring book, watching a DVD you’ve seen a thousand times before, texting a friend, lying out in the sunshine, listening to a TV show but not watching it. It’s hard to think of much else. If you have any suggestions please leave a comment!

This makes managing energy levels incredibly challenging; when most activities can be classed as requiring high energy it can be difficult to fill the day. Although it’s possible to do more than one high energy activity a day, in fact it’s often necessary to do so, it requires significant rest periods between them.

And by rest periods I mean complete rest. No stimulation. Deep, meditative breathing. Lying down but not going to sleep. Perhaps listening to some gentle music.

Managing a life with such limited energy while carrying out simple everyday tasks, let alone having some fun and achieving what some people wouldn’t even think about, is incredibly difficult. But for many of us it’s necessary. I hope by writing this it helps people understand just how difficult it can be to manage activity levels with such limited energy.

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And so the challenge continues…

By Clare

On 27th April 2016

In My Open University Journey, Studying

I haven’t been able to update this blog as often as I’d hoped. So there’s now quite a bit to catch up on.

I got 56% for TMA01; I can’t say I wasn’t disappointed by this bug at the same time remembering everything I’d been going through I think it was a reasonable score.

A lot of project work has been completed, as has TMA02. I received a mark of 70% for that! A great improvement. However my health, having picked up in recent weeks, has recently taken another nosedive. Half hour studying is exhausting. Some days even that isn’t possible because the pain is so severe.

I’m doing little bits here and there but it doesn’t feel like I’m making any real progress. I want to be organised so there isn’t a massive rush come the TMA03 deadline on July 5th but I just can’t seem to get motivated when I am well enough to study. The rest of the time my brain wants to get on but my body says no (well what other message can you get as pain lances through you when you move slightly?!)

I’m back to feeling rather uncertain about how I’m going to manage this module, despite the fact I have a solid idea and have already done a great deal of work towards it. I’ve got a whole list of requirements I need to assess companies offering potential e-commerce solutions for a business against, a bucket load of research into the benefits and risks of e-commerce solutions and how an e-commerce solution can broaden the customer base for a company. (Not just any company but the specific company I’ve based my project on). And there’s more I don’t even want to think about.

Motivation is rather low and quite honestly all I want to do is sleep; if only my illness would let me! I know things will get better again and I’ll find a way to get through the work, and hopefully pass this module but right now the way doesn’t seem clear, in fact it seems fraught with difficulties.

I’m constantly reminding myself why I’m doing this, that I’m just 13 months away from finishing my degree after 6 years hard work (thus far). So close to achieving what I once considered an impossible dream. I’ve got to keep going if only to say I tried.

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A Royal Fundraiser with a Difference!

By Clare

On 15th April 2016

In Fundraising, ME Awareness

So it’s that time of year again; M.E. Awareness Day is fast approaching and I’m beginning to make plans for fundraising. This year I plan on fundraising for Invest in ME again by dressing as a Princess on May 12th, you might remember I did the same last year (I was a Princess for a day!). However I thought I’d try and mix things up a little this time round.

So I’ve had a thought, on my JustGiving page I shall start a story which anyone who donates can add a line to by putting it in the comments with their donation. I shall try and collate all the comments regularly, into the story so far on the JustGiving page, but you’re advised to read the comments by the donations before deciding on your line in order for the story to follow on from the last line. I think this could be rather fun and it’s something that’s a little different, I shall post the finished story after May 12th right here on this blog, with each contributor recognised in brackets at the end of their line of the story.

The great thing is YOU can take this story WHEREVER you want it to go, just by making a donation however big or small, and adding a line. There’s no obligation to add a line to the story you can donate just because I’m digging out a posh frock and putting on a tiara for the day, but if you want a bit of fun the option is there for you.

So please take part if you can, more details on how to donate can be found on my JustGiving page or you can text your donation by texting MEPC92 followed by your donation amount (£1, £2, £3, £4, £5, or £10) to 70070

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Yes Television Really Can Be Exhausting

By Clare

On 29th March 2016

In ME Awareness

Most people don’t think anything of sitting down in front of the television to watch their favourite program. In fact most consider it a relaxing activity, something they can do while having a rest after a long day at work.

Sadly with M.E. that isn’t the case. Television is actually a very stimulating activity, when you think about it there’s the moving images, the flashing as the light changes and the sound; that’s without having to filter out any conversation going on in the background which inevitably happens in family life.

All of this takes energy for the brain to process. Managing to watch the television in a silent household can be a challenge if you have M.E. At times it is impossible as the images move too quickly, the light from it is too bright or the change of images causes too much of a flashing effect. Obviously sound doesn’t have to be a problem as you have some control over that thanks to the volume control, but still if you’re watching TV with someone who prefers it on quite loud, sound can become another factor that makes watching TV a challenge.

As a result of this I have found it helpful to limit the amount of time I spend watching TV. I think on average the absolute maximum I can cope with is 4 hours; that sounds like a lot but when you’re unable to do much in a day except lie in bed or on the sofa that’s not much time at all. In fact if you think about the last time you got hooked on a boxset of programs, that’s probably what…four episodes? Somehow I suspect if it was a really good boxset you’d watch more than four episodes in a day if you had the time. You’d probably watch them back-to-back too.

I have to be careful and plan what I want to watch, if there’s something I really want to watch on TV in the evening but I’ve already watched four hours earlier in the day then that show has to be recorded or watched on the catch up TV services; recording it is preferred as then there’s no time limit on it’s availability.

Watching more than about four hours of television, or even watching four hours of unbroken television leaves me with a horrendous headache, increased noise and light sensitivity and at times very achey eyes.

So Yes Watching Television Really Can Be Exhausting.

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