Smiling Clare - Part 39

Poems

On 10th September 2014

So I’ve recently started writing a few poems about life with M.E. which I figured I might as well share with you all. However I’m rubbish at coming up with titles for them so they shall probably remain nameless unless anyone has any suggestions!

Here’s my first one:

I don’t party and I can’t drink,
The noise is too much and all I want is to sleep.
I rarely go out, no cinema trips for me,
It takes too much energy and the light floors me.
Work is impossible and walking hard,
I do what I can but it’s often marred,
By people saying it’s all in my head,
If only they knew what I wished instead.

I manage to study and for that I’m lucky,
I appreciate it but don’t get too plucky.
Phone calls are difficult, email is best,
I can’t lift a kettle and then there’s the rest.
I have to use crutches, a walking stick and more.
A wheelchair, a shower seat or else I’m on the floor.

I study, I eat, I blog and I rest.
I wash, I dress, I sleep; well do my best.
For that’s not always possible, it’s not how it goes.
I just have to live with it, even when I’m low.
I focus on achievements, no matter how small,
And wait for a cure or improvement to call.

For now I must wait, resting a lot,
With my home like a prison but the haven I’ve got,
Social networks a lifeline, like nobody knew,
A place to connect with many like you!
All this is happening at the age of twenty-one,
In the blink of an eye, my youth has all but gone.

©Clare Wood

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Crash…

By Clare

On 3rd September 2014

In ME Awareness

Where do I begin? I may have overdone things last week. It comes from seizing the opportunities that presented themselves. But unfortunately I have to pay for the enjoyment I had. I may also have a virus, but I can’t decide if it’s ‘just’ M.E. symptoms flaring or in fact I’m also battling a virus. We shall have to wait and see on that one.

You see last week I seized the opportunity to go shopping on a number of occasions. First to a local retail park, then the city centre, another local retail park and finally a large store about 25 miles from where I live. These trips weren’t long, half a day at most, some no more than an hour. All were enjoyable. All successful trips. All in the space of four days. All while doing other seemingly little things during the day as well. And that my friends is my mistake.

I shouldn’t have done the other little things when I knew I was going out, or I shouldn’t have gone on one or two of those trips. The problem is it was an opportunity that rarely comes my way, to go shopping during off peak times is an opportunity I hate to miss. At least that way the payback isn’t as severe as it would be during peak times. Unless you do four shopping trips in as many days…

The trouble is I needed to go shopping, to at least four shops. And I admit I didn’t need to go to the large store about 25 miles away, but it’s a store I love going to and often find a good bargain at, so I went anyway. Like I said all the trips were successful in one sense or another; new duvet covers, a new dress suitable for a wedding, deciding on what I would like for my birthday, replacement cups with large handles and enjoying the Essex countryside along the way (well at least on the last trip!).

Now I’m in the beginning/middle/end of a crash, I really can’t decide. Or at least that’s how it feels. I spent most of the weekend in bed, dozing through trashy DVDs I’ve watched numerous times and know the storyline of pretty much by heart. I’m in bed at 10pm and asleep by 11pm at the latest. I’m sleeping for around 10 hours a night, yet still struggling during the day. My pain levels have rocketed, especially, for some reason unknown to me, in my left hip. My concentration is poor and the amount of time I’m able to spend reading/doing work on screen without getting a headache has reduced considerably. Sitting upright has been a challenge as well, since it seems my blood pressure plummets and I get rather dizzy. My sore throat and headaches have also flared, and the fatigue…there’s literally no words to describe how bone crushingly exhausted I feel, which is what makes me wonder if perhaps I’m also fighting yet another virus, yet until I’m out of this crash I’m unable to tell. I might never know.

But I’m recovering, very slowly. With lots of rest. I’ve had to cut back on the time I spend on social media. I’ve fallen behind with what’s happening with my friends’ on there. I’ve missed out on visits to my family. I’m relying heavily on my family members to help me out. All because I went on four shopping trips in four days. Something so many people do without thinking. They wouldn’t have to consider that many trips, especially at the length they were, a source of extreme exhaustion. A source of isolation in many ways. Yet for me and many others with M.E. that’s just what so many shopping trips does.

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Prepaing for T320…

By Clare

On 3rd September 2014

In My Open University Journey, Studying

Well September has crept up on me quite quickly. After a few months of not studying I’ve decided I need to use this month to slowly get myself back into the studying mindset. And hopefully avoid any major impact on my health. (I can only hope right?!)

You see despite getting plenty of rest during this break, I’ve also picked up a number of bugs and been working on setting up a study area ready for when T320 starts in October. Alongside doing a few fun things I can’t do whilst studying! All this means that although I have seen improvements in my health they haven’t been as great as I’d hoped for. So this module could be another big challenge. But as you’ll know if you’re a regular reader of this blog, I’m always up for a challenge when it comes to studying!

While my health isn’t all that great right now, I’m confident that by taking things slowly and building up my study hours I will be able to manage this module. In order to do this I have decided to spend the first two weeks of September studying ‘The Good Study Guide’ by Andrew Northedge. I figure that not only will it help me get into the studying mindset and build up the hours I’m able to spend studying, but also the knowledge I gain from studying it might help me with the actual module when it begins!

As soon as the module website opens I plan on printing out the materials – T320 Ebusiness Technologies; foundations and practice has all it’s reading materials online – and making a start on studying them before the official start date. I want, actually I need to get a head start on this module, not just for my usual reasons of if I get a few weeks ahead it doesn’t matter if I have a couple of ‘rough’ days where I’m unable to study because I won’t fall behind. But also because I have an event to attend on the official start date of my module and I know it will require at least a couple of days proper resting to recover. I can’t be sure how much rest will be needed, however from previous experience I can be pretty certain that it will be at least a couple of days perhaps longer. I don’t want to have to worry about falling behind and I don’t want to miss out on going to this family event. Therefore the plan is to get enough of a head start when the module website opens to not have to worry about falling behind in those first few days. Hopefully I’ll recover quickly and the head start will continue to leave me ahead and with some breathing space for any ‘rough’ days that pop up along the way.

Anyway overall I’m looking forward to T320 and what the module will bring, I’m just hoping my health will allow me to enjoy studying and not make it too much of a struggle!!

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Over Halfway Through Summer Break

By Clare

On 26th August 2014

In Goals

Well most of my recent posts have all been a bit escapist, either about M.E. awareness or a general way of seeing what living with M.E. is like. Anything but my life. So this time I thought I’d bring you up to date on my life, how things are going, what’s been happening etc.

As I’m now over halfway through my summer break from university, (where did the time go?!), I’d hoped I’d be seeing improvements on how I was back at the beginning of my break. And I have seen improvements, not as big as I would like but they are improvements all the same, for that I’m thankful. I’ve not escaped the bugs that have been doing the rounds this summer, and am currently still recovering from a stomach bug I had last week. You’d be surprised at how long it can take me to recover from something so simple. But despite the bugs, a tooth abscess and some disturbed nights I am seeing small improvements in my health. As always it’s proving to be quite a yo-yo but I’m getting there. Lots of rest, time spent in bed or on a makeshift bed on the sofa have been key. Yet I’ve still managed to do things and enjoy myself.

I’ve got myself a nice study area sorted for October when I start my next university module. Well I say sorted…it’s still a bit of a work in progress but we’re getting there. All I need is to be well enough to sit at the desk there and study. At the moment it seems perfectly possible and I’m managing short periods sitting there working away on my computer. Fingers crossed it lasts.

My vegetable patch has been quite successful this year and still is being successful. I’ve finally managed to grow some decent carrots! Along with lettuces, peas, tomatoes and leeks. We’re working on almost tripling the size of the vegetable patch in the garden so hopefully next year will be even more successful. (This does mean I need to find willing family and friends to volunteer and do the hard work of digging it over though!)

I baked a cake!! Nothing fancy, just a triple layered sponge cake. That absolutely exhausted me though so I had to have help the following day making some butter icing and sandwiching the three sponges together. But I baked a cake. I haven’t attempted that in about a year, maybe longer. It seems so ordinary to most people but for me that is a big thing. I love baking but I do find it tires me out a lot, I’ve had to pretty much give it a miss since relapsing last year. This cake represents an improvement; the fact I had to have help with the butter icing is irrelevant. I attempted to bake the cake, which meant I felt I had the energy to do so. In hindsight a simpler cake would have been a better option but now I know I hope I can begin to delve back into the world of baking. A world I enjoy so much.

I spent a lovely evening sitting in the garden with a fire going listening to the V Festival that was happening at Hylands Park this weekend just gone. I’ve always thought it’s something I’d love to actually go to but of course this M.E. malarky gets in the way! So since I’m fortunate enough to live close enough to hear a lot of it in the garden and even my bedroom I figure I’ll make the most of it. Amazingly I fell asleep before the end of the Sunday performances though!!

There’s been a few other things happening but I think I’ve covered the main bits of enjoyment and importance. I dreamed things would improve more than they have so far this summer but I’m thankful for the improvements I have made. Yes I may still need my wheelchair to get out and about but I am managing to walk around the house and garden mostly unaided (furniture can be a very useful thing at times though!) My energy levels are still low and deplete very easily, however I haven’t and won’t let that stop me enjoying myself and getting on with things. My summer break may not be going quite as I planned, but I’m determined I’m going to make the most of it!

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