Smiling Clare

Living Life, Within the Limits of Chronic Illness

What’s in a name?

Have you ever wondered why I titled my blog A Life Within an Illness? Yes? Well today I thought I’d explain.

It might seem like a strange title but to me it makes perfect sense. You see no matter how well I am – and by well I mean how mildly/moderately/severely affected by M.E. I may be – I always have to live within certain limits if I’m to maintain that level of activity.

So to avoid a boom and bust cycle I have to carefully manage my activities no matter how much better I feel. Do too much and risk pushing myself back to more severe symptoms for an unknown period of time; could be days, weeks, months or even years.

Therefore to me I’m living my life within the limitations of M.E. It hasn’t taken everything away from me but I have to live within the limits it sets. My life happens within the limitations of my illness. Hence the name A Life Within an Illness.

For me this name signifies I want to make the most of my life within the limitations I have. It’s not that I’m living within the illness itself, just within the boundaries it sets for me. A positive take on a situation that can be anything but.

Right now I’m finding those limits very restricting, especially since I’m back on crutches unable to put weight on my right knee or bend it for any real amount of time. The pain is making me tire more easily, but also making it difficult to get a decent sleep. Using crutches to hop around is putting extra stress on my arms & upper body which after a number of days is starting to take its toll. I’m having to rely on my family to carry things from room to room for me. But things will get better again, for now I have to live within these limits. I’m still managing to do things albeit sitting down resting my leg straight, and for that I’m grateful.

I will make the best of living my life within the limits of my illness.

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Parking Difficulties.

Over the years I’ve gotten used to the looks of disbelief when I get out of my wheelchair and walk a little, or even just the looks for being in a wheelchair. But these days when we go out in the car I’m getting a different look.

You see since 2010(ish) I haven’t had a disabled parking badge – at the time my renewal was refused – so we have to park in a standard parking bay. Not a problem in one sense; being in the wheelchair means it doesn’t matter how far it is to the shop, I’ll make it there. But in other ways it really is a nuisance. Besides people always give you looks of amazement or just strange looks when getting a wheelchair out of a car in a standard parking bay!

You see I’m not one of those people who will use a disabled parking space without a disabled parking badge. That infuriates me. I might have just cause to do so but it’s not the right thing to do. I won’t use a parent and child bay either even though it offers similar benefits to a disabled parking bay. Instead I use a standard parking bay and often struggle to get out of the car due to lack of space and endure bewildered looks from innocent passersby who can’t understand why I’m using a wheelchair but parked in a standard parking bay. It’s also been known for my Dad to reverse the car out of the bay to enable me to get out of the car more easily! But this means partially blocking the car park for a time and most often people are unimpressed!

A disabled parking bay provides extra room to manouvere in and out of the car. It can be quite a challenge to get out of the car in a tight spot when you have limited mobility. I know from experience. If you’re reading this and have a normal range of mobility, remember the last time you parked in a very tight parking space and had to get out of the car. Was it easy? I imagine the answer is probably no. Now try and imagine doing that when you’re mobility is limited; all your muscles ache like you’ve done a long workout, your joints are stiff and don’t want to move. Can you begin to imagine how difficult it is to get out of a car parked in a tight spot when you’re feeling like that?

A disabled parking bay is also positioned closer to the shops, right now this doesn’t really matter to me but when my health starts improving (and it will start improving) I need to park close to a shop to be able to walk round it. Otherwise I use all my energy walking from the car to the shop then can’t get round the store or back to the car. At that point I will have to use my wheelchair despite perhaps being able to walk around the store if I could park closer to it. Using a wheelchair when you’re unable to walk much is one thing, but to actually have to use it because you’re not allowed to park close enough to a shop to be able to walk round it is a bitter pill to swallow.

I didn’t choose to have limited mobility. I didn’t choose to need a wheelchair. When the time comes that I can walk more and get around a shop without a wheelchair I’d like to be able to have that option. I don’t want to have to choose to use a wheelchair so as to make sure I don’t make my health worse. If I push beyond my limits at that point I could end up in a wheelchair for years to come. Yet because I’ve been refused a disabled parking badge that will be the choice I have to make.

The trouble is that apparently, according to the refusal letter I received at the time of refusal, M.E. alone doesn’t meet the criteria for requiring a disabled parking badge. This is obviously a result of the lack of understanding about what M.E. is and how it affects people. It’s a debilitating, chronic illness that robs people of their mobility, their livelihoods, their careers, their dreams and ultimately a large part of their lives. Things like a disabled parking badge can make a huge difference to the life of someone with M.E. It can be the difference between being housebound and being able to get out in a wheelchair for a short period of time. It can make the life of someone with M.E. that little bit easier. Not only that but it makes the life of their carers easier too. I suspect most people don’t realise just how much of a difference that piece of laminated paper can make to a person’s life.

 

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Meditation

The one thing that really helped me get through the tough few weeks I had leading up to my exam is practicing meditation. I’ve come across a couple of fantastic smartphone apps which have really helped me so I thought I’d share.

Andrew Johnson’s Relax Lite and Power Nap apps (definitely available for Android) are free and I downloaded them just to try. I’ve been suitably impressed by them and will now look into buying some of the other meditation apps Andrew Johnson offers.

The guided meditations in these apps are of perfect length to do during a break from revising or at the beginning of the day. Come the end of the meditation I feel relaxed and energised (now don’t take that too seriously – it doesn’t miraculously mean I can do everything I want!) Without them I think I would have been even more of a mess during those few weeks – before I started using the apps I came very close to giving up on my degree, the stress of recent events, combined with my health declining among other things, had me wondering why I ever thought it was a good idea and thinking it was an impossible feat.

But things changed. I can’t say it’s all thanks to the meditation apps but they certainly helped. They allowed me to take time out from constantly stressing, to relax and when I finished one of the meditations I felt calmer and more in control, positive about what I’m embarking on. It didn’t seem totally impossible like it did before the meditation.

All in all I honestly don’t know what state I’d be in now if I hadn’t chosen to try these apps in those few weeks. They are quite honestly some of the best meditation apps I have come across! Well worth a try if you’re feeling stressed or want to try your hand at meditation – anyone can do it.

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Book Review: A New ME by Barry John Evans

This is the first time I’ve written a book review on this blog. In fact it’s the first book review I’ve written since school when it would be set as homework. But having read this book, I felt I had to review it and share it. It just had to be done. So here goes:

A New ME by Barry John Evans.

This book is written by a young ME sufferer and describes his experience with the illness; the years leading up to a diagnosis and the ways he’s found to cope in the first year. The adaptations he’s had to make to his life and the limits that have been placed on him due to ME.

I downloaded the book on my Kindle one afternoon, and began reading it in the evening expecting it to take me a good few days to read. But as soon as I started reading I was hooked. I couldn’t put it down. For the first time in months I sat and read a book for a few hours, cover to cover (can you say that if it’s on a Kindle?!) This just goes to show how well written the book is. At no point was I tempted to put it down, in fact I struggled to pull myself away from it to get a much needed drink, that’s how hooked I was.

As someone with ME I can relate to a lot of what is described in the book. The loss of friends and feeling it must be something about you that’s caused it; not knowing how to answer that innocent question of ‘How are you?’ that comes to be dreaded. Not only can I relate to it as a sufferer but the way in which the book is written, people without ME who read this book will gain an insight into what ME is and the things sufferers have to cope with; not only the symptoms of the illness itself but all the other things that come with it; adapting to the limits it imposes, the lack of understanding from the medical community, government agencies and society as a whole. This book gives a valuable insight into all that and more.

All in all this book is a fantastic read for anyone interested in reading about ME and the experiences of a sufferer. I can imagine the energy it must have taken to write and the symptoms that had to be fought in order to ensure the end piece was as well written as it is. For that the author deserves a massive well done and virtual pat on the back (I’m sure a real pat on the back would hurt too much). So Well Done Barry!

A New ME by Barry John Evans is available at:

If you want to read Barry’s book, it is available from Amazon in paperback or on Kindle via the following links:

United Kingdom 
 
Paperback http://www.amazon.co.uk/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403374862&sr=8-1

Kindle http://www.amazon.co.uk/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=sr_1_1?ie=UTF8&qid=1403374862&sr=8-1&keywords=a+new+me

United States

Paperback http://www.amazon.com/A-New-ME-Looking-future/dp/1499585497/ref=tmm_pap_title_0?ie=UTF8&qid=1403375040&sr=8-6 

Kindle http://www.amazon.com/New-ME-Barry-Evans-ebook/dp/B00L1LIT6E/ref=tmm_kin_swatch_0?_encoding=UTF8&sr=8-6&qid=1403375040

The book is also available in other countries too, just search the Amazon site for your country for ‘A New ME by Barry John Evans’

If my review isn’t enough to convince you, Barry has created his own video explaining about the book on YouTube which you can find here.

Plus 10% of the profits go to the ME charity Invest in ME

A final few words from me…

I can’t mention enough how much I enjoyed reading this book or how much I can relate to a lot of what is written. I’m proud to be able to call Barry my friend and wish him all the best in the future!

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