Tag: 2019 Page 5 of 7

Who Am I?

On 3rd April 2019

I first became ill with M.E. at 12 years old. I was severely ill for 3 years before experiencing about 2 years of recovery. Aged 18 I suffered relapse after relapse; every time I saw some progress back to how ‘well’ I’d become in those previous 2 years something would set me back. And things spiralled with a massive relapse aged 20.

In a way I don’t feel like I’ve had a chance to find out who I am. Pre-illness I was an energetic school kid who’d just started secondary school, for the first time I wasn’t the subject of school bullies, I enjoyed learning, had found I really liked basketball, always had my head stuck in a book and was walking the 20 minute walk to school and back each day.

During my teenage years I struggled to complete my education, I was urged to do 5 GCSEs but despite my best efforts this wasn’t possible and I had to reduce it first to the 3 core subjects, then to just English, and finally to just English Language. The workload was just too much, taking all my energy.

In that time I never lost my love of books though. I may not have been able to read much and the little I did do tended to be for my GCSE studies but it was a part of the old me which had survived this illness.

But because all my energy was taken up with studying I never experienced the ‘normal’ teenage things. To this day there is so much I’ve never done and I can’t help but wonder if perhaps this has shaped who I am today.

I’m still a bookworm when I’m able to read a book. I still love learning. I enjoy crafts of all kinds. Yet that is about all I can say about myself. I’m always finding the positives in things and the humour in the situation I find myself in.

It seems in a way nothing has really changed since I was 12, I still love all the things I can still do that I did back then. The rest has been shaped by being poorly. Life itself hasn’t really changed for me since I was 12; I’m still living with my parents, still require them to help me a lot more than they would a healthy person my age, still enjoy kids films (sometimes they are the only kind of film I can concentrate enough on to follow the plot), still want a hug when feeling really poorly.

Sometimes I can’t help but wonder what I would be like if I hadn’t fallen ill, would I have done all the things I dreamed of doing? Achieved all the things I wanted to do? I still grieve for all the experiences I’ve missed out on, the time I’ll never get back. And I question who I really am, because there are times when I feel that I’m not much more than my illness, simply because it limits almost every aspect of my life in some way. And it takes all I’ve got in me to try and be all the things I want to be.

Share this:

A House of Cards

By Clare

On 28th March 2019

In ME Awareness

Having M.E. can be thought of as similar to being a house of cards. You know how as a kid (no matter how big or small!) you’d find entertainment from a pack of playing cards, balancing them against each other in triangles and building it up layer upon layer? I don’t suppose kids do that any more and I’m probably just showing my age, but still.

You spend time slowly, painstakingly carefully putting these cards together to form a ‘house’, but the slightest breeze can cause it to collapse. You then set about picking up the cards and start putting them back together, building it up again. Hoping you will get nearer to the top of the card house this time round. The bigger you aim, the harder it is to achieve.

With M.E. you spend time slowly, painstakingly building your life back together; managing your symptoms and balancing rest and activity. But it just takes the slightest knock (a virus, stress, sleep deprivation etc.) and it collapses around you. So you have to pick up the pieces and start putting your life back together, building your activity level up again, ever so slowly and carefully. Hoping you will get beyond the point you did last time and be able to do that little bit more, for a little bit longer, possibly even recover.

Not every knock takes you back to where you started; some are like one level of a house of cards coming down, while the foundation layer, or more even, remain. Other knocks lead to a more substantial collapse of the house.

Living well with M.E. is a balancing act of rest and activity in order to keep your health the best it can be, and like a house of cards, it is nigh on impossible to reach the top and stay there unless conditions (atmosphere, environment etc.) are perfect.

Share this:

Jealousy

By Clare

On 19th March 2019

Being chronically ill is hard. Most of the time I can potter along in my own little bubble, convincing myself I’m doing ok (even though to a healthy person my life isn’t anything close to ok; I mean to what fit and healthy person would managing a trip out for one hour once, possibly twice a week, but needing to rest in between, and having to rest after having a shower, constitute “doing ok”?)

But anyway, for the most part I am, if not happy with my life, accepting of the way things are. Sure they could be better but I just have to make the most of the way things are. Not everyone’s life can be lived in exactly the same way. And no one gets a completely easy ride (everyone has a different perspective, and one person’s troubles, are trivial to another one’s).

Which brings me round to the reason of writing this post. A lot of my friends and family are in relationships, engaged, married, starting families of their own etc. and here I am firmly stuck in a world which revolves around my illness.

I try not to let jealousy get the better of me, but I don’t think I’d be human if I wasn’t a tiny bit jealous of all that they are doing/achieving. Of the fact their lives are moving on and they’re growing into the fully fledged adults they are. Whereas I am stuck, basically like a kid, with my parents having to look after me because there’s no way on earth I could manage all the everyday basics myself without collapsing. (And by basics I’m not even including working, just cooking all my meals and cleaning up afterwards!)

And so I try and keep my jealousy in check. I bite my tongue, rather than make silly comments like “Oh I wish I could do that” or “Yeah well I would do that if I could” which can be taken the wrong way. I try to keep a lid on my frustrations about the way my life is in comparison with others. In fact I try and avoid comparisons full stop because they just make life more difficult to stomach.

But there are times where I have to acknowledge that my life isn’t like most peoples. I need a little cry, or some way of venting that jealousy and frustration. I know life isn’t fair in general. I know this is my journey, my life and things will work out eventually.

I believe that there is some great plan for my life and that this is just a patch where I need to learn something about myself. What that thing is, I honestly have no idea. I don’t know what the great plan for my life is either. But I would rather believe that there is a greater plan, and things will get better than they currently are, because quite honestly the way things are at the moment is rubbish and I don’t want to believe things can continue like this indefinitely.

Share this:

The Honest Truth

By Clare

On 15th March 2019

I’m scared.

Those two words sum up how I’m feeling about life at the moment. Forget Brexit and the political turmoil it’s causing. Forget everything beyond what is happening with my body. The sudden worsening of symptoms has scared me. Feeling almost constantly light headed when doing anything but lying down scares me. The increase in pain which painkillers isn’t touching scares me. The constant feeling that I need to sleep scares me.

I know I may have just picked up some lurgy. I know I may have overdone things lately; pushing through when I should have rested. And I know in time these things will pass, or perhaps I’ll just get so used to them they will become ‘normal’, but right now they scare me.

Looking to the future scares me too. I try and live in the moment, survive each day, making the best of whatever situation I find myself in. Because no one knows what the future holds, I’m hoping in time I will be able to be less dependent on my parents, meet someone to spend my life with who is willing to accept and try to understand my illness. But I also know the future is uncertain, there is so little I am able to do; to me it feels like I do a lot on a “good” day, however if a healthy person was to do the same they’d probably spend hours bored out of their mind, and wonder how I can call that a “good” day.

My reality is so different to that of my family, of what I imagined it would be. I’m scared that life is passing me by, but at the same time because I’m so unwell I don’t feel able to do anything about that.

I know feeling scared is really only natural in this situation. I mean I don’t think anyone wouldn’t be scared at a sudden worsening of symptoms. But that doesn’t make this any easier. For now I just need to focus on getting through each day, hoping there will be small improvements that add up to something bigger in the future.

Share this: