Smiling Clare

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.

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.

 

To most people this probably sounds like some over dramatic post, and they’ll think I’m being silly making such a big deal about such a small thing like being at home alone. Which is kind of the reason for writing this post; to highlight that this seemingly insignificant thing is actually quite a big thing when living with moderate – severe M.E. (I say moderate – severe because for the most part I’m on that border between the two).

There is nothing I would like more than to be independent, and be able to live independently. However, there is no way it is possible at the moment. The unpredictability of this illness barely allows it to be considered.

Some people believe confidence is the biggest issue with being left home alone, and to a certain extent they are right. BUT this isn’t the type of confidence which can be built up to the point where you’re fine with being left home alone. It isn’t all anxiety that can be overcome. It’s a confidence which is difficult to build up because one day, even one hour, I am able to do something simple like slowly get up or down the stairs, the next my legs are far too weak and shaky to even attempt it without the aid of someone else. And it is often impossible to predict whether this will happen; if I have done too much that day I can often predict it will happen, but other days where I think I have paced myself fairly well it can still happen out of the blue.

Imagine living like that and surviving just a day alone at home, where the bathroom is on a different floor to the bedroom. Not knowing if the next time you go to stand up your legs will support you, or if you’ll feel so faint you have to lie down until it passes.

It’s why whenever I am left home alone for a few hours, I have to be on the ground floor so the bathroom is on the same level, and this in itself restricts the time my parents can be out anyway; if they go out in the evening to meet friends they are conscious of the fact I am having to lie on the sofa unable to go to bed even if I want to because I can’t be sure that (a) I’ll make it up the stairs on my own okay and (b) if I need the bathroom once I’m upstairs, that I’ll be able to get back downstairs to it. They have to make sure I’ve had a hot meal that day because there is no guarantee I would be able to safely cook even a basic ready meal, since you have to carry it from one place to another while hot, and on shaky legs when having to hold the plate with both hands due to poor grip, this is not always an easy, or even possible task! (And don’t even get me started on following the instructions with a brain thick with fog!!)

This also means I have to be up and downstairs at least, before my parents go out in the mornings, as I don’t know how strong my legs will be when I wake up, or if I’ll be feeling faint quite easily that day and need a hand getting down the stairs. More often than not because I don’t know how well I might manage with getting dressed, if I’m not feeling too bad, and will be home alone for more than an hour or so, I will not only be up before they go out but also get dressed and have my breakfast.

I am very lucky in the sense I am not often left home alone longer than a few hours, but when I am it is quite a daunting thing and over the years we have learned that it’s best to be prepared for the unpredictability of this illness. And so precautions have to be taken each time it happens.

It may seem like such a simple thing, and quite honestly it is something I would love not to have to really think about. But the fact is, with a slightly dysfunctional body like mine, being home alone is often something which is survived rather than the insignificant thing many people consider it as. That’s not to say I don’t enjoy being left home alone, sometimes having some peace from the hustle and bustle that comes with living in the family home is a welcome relief, and it means I can rest without feeling quite so guilty about doing so, but it can also be quite difficult and at times scary. With M.E. life never is quite as simple as it should be.

Since being ill I’ve learned to appreciate every little thing in my life. And by little thing, I mean even the tiny things. On bad days, the days where I struggle to get myself out of bed, need help washing and dressing, struggle to hold a cup of drink etcetera, there is always something I can be grateful for. Be it my parents helping me, the glimpse of blue sky out the window, or even just the knowledge that with rest and time things should become easier again.

On better days I’m grateful I can wash and dress myself, make a single cup of tea using a hot water dispenser, read a little bit of book and other things.

And on those good days, I’m grateful for managing the bigger things like seeing a friend, going out shopping (albeit in my wheelchair), or even a trip to the coast for the day.

These are things I would never have fully appreciated before I got ill. Many of them I would have taken for granted every single day. I’d probably have been grateful for the bigger things, although I wouldn’t have been grateful for going out shopping in a wheelchair, in fact unless there was something special about that shopping trip I probably wouldn’t have taken much notice of what I was doing that day, or appreciate it.

There’s not many ways in which being ill has made my life better; the endless fatigue, pain, list of symptoms, medical appointments, benefits claims, and the list goes on, none of that makes life easy. That’s not to say I’m not grateful for the medical support or the benefits I receive; I am immensely grateful for them. It’s just the process, and energy it takes to fill out forms, attend appointments etcetera, all eats into that precious little energy supply I have for everyday tasks and things I enjoy doing.

However being able to be grateful for all the little things, and appreciating them is something that I feel has made my life better since becoming sick. It doesn’t change any of the other stuff, but it does make coping with it all that little bit easier. And in turn makes me feel a little bit happier about the life I am managing to lead; it may not be the life I imagined I’d be living, it may not be the life anyone would choose for themselves, but it is the life I’ve been given and I’m going to choose to make the most of it, appreciating the things often forgotten in everyday life.