Tuesday, 27 September 2016

It's the small things

Please imagine listening to Celebrate Good Times (Come On) whilst reading this blog post with balloons flying down from the sky or whatever makes you smile, because I sure am!

When I started my blog the intention was to include posts about M.E. and although it has popped up in some of my pieces, for example the baking ones where I give my mum a shout out for doing most of the work on making my recipes I have so far only written one other piece on my health.. I find it quite difficult to write about after 10 years as its just the normal to me, but recently, after a really horrific three years, I have seem to have a made a small improvement and with that I have achieved a secret goal. Before I let you in on this I should tell you what has been going on. 

A Bit of Background

Last summer, after a couple of years of several tests, procedures and anaesthetics, I had two operations to implant a sacral nerve stimulator. This is to essentially control huge pain, pressure and frequency in my bladder. It had got really bad and having something similar to a pacemaker inserted into my back with a little wire to my sacral nerve was the last resort and it had to work, their was no other option. 

Yes, this is now permanently in my back!

I did manage a couple of trips out between the two operations, but it was difficult getting in and out of the car and wheelchair without pulling the wires out of my back (and ruining the whole operation), a couple of short picnics were all I could manage. Despite the pain and effort it was nice to get out the house, especially as even after the the final operation my activity levels were at an all time low!

So to cut a very long story short, a year on front the final operation I am no longer taking huge doses of painkillers, in a 24 hour period I am not using the lavatory 50 times a day and my diet is slightly more flexible. I still take a small amount of painkillers and another bladder controlling medication, I still have a very low acid diet, and I still have flares which can last a few hours or several weeks but now the pain is hugely decreased and my frequency is down to 12 - 15 times a day. No more am I awake every night at 4am in extreme agony on the verge of calling an ambulance. It also took me a few months to get over the anaesthetics in my system and my body to heal up. 

But after 6 - 9 months I felt that the side-effects of the operation had gone and also my bladder wasn't draining every last resource and more from my system. Things still were not great, I was and am not nowhere near as ‘well’ as I was three years ago (and even that was still very ill) but as my bladder had stopped reacting to everything and anything, my M.E. specialist tried me on new a medication, Modafinil. This is a fairly new drug I believe and its proper medical approved use is for Narcolepsy, which although I do not have this condition I spend the day in a haze of fatigue and therefore might help. I started off well increasing the dose and found that I could actually watch TV for longer periods of time without having to pause it for a rest every 10 minutes. I had minor side effects, but each subsided quickly after I got used to each higher dose. Unfortunately I had to come off it for a bit as my GP couldn't actually prescribe it for me and by the time I went back on it, at the lower dose, something else was going on with my body and I reacted so strongly I only took it for two days as it made me feel like I wanted to die, not in a depressed way, just in  a horrendous my body physically cannot cope way. Anyway, a couple of months later I tried it again, and on advice from my specialist at a sixteenth of dose (I know, my tablet cutter has never seen so much action). With no adverse affects I increased up to an eighth of a dose and after my body got used to that I went to quarter. It was during my 1/8th of a dosage I started to notice a rise in energy levels and concentration and I decided to see if I could reach goal I had been wanting to achieve for ages, as each time I tried in the past I never suceeded, but would this time be different. 

To read an entire book. By myself. For just under three years, of the ten I've been ill, I have not been able to read a book without someone either reading it to me, using an audio version or having my computer programme read it aloud to me. Despite the fact that I am dyslexic I have always persevered with reading and although I would still struggle even without M.E. I love to read books. I love listening to my audiobooks in the day and at night to get me through the pain and the boredom, but it’s just not the same. I still cannot hold up a book very long, without having pain in my arms for the next couple of days and even struggle with my kindle, but at least it is much lighter and more manageable. So as you can see the level of ill-health I had found myself at reading a book was just impossible.
Philippa Gregory is my favourite author, so I was pretty excited about this book!

I Did It
I am very happy to say that I have managed to read a whole book. It took a couple of months and I thoroughly enjoyed it. I read Three Sisters, Three Queens by Philippa Gregory

Usually I hate getting to the end of a book, but I was pretty happy to see this on the last page!
This may seem like a small achievement to some and when you have M.E. the small improvements are always the most important, for some people it might be sitting upright on the edge of a bed for 10 seconds or going for a short walk or really anything that ‘healthy’ people take for granted, but when comparing myself to my peers and being ill for so many years, it is easy to brush these small things aside, forget about them, not acknowledge them, only celebrate the big things. But it’s not the big things that mark the improvements towards getting better. Yes I celebrated my degree ceremony last April and my whole family and I were over the moon, but I had to have two weeks in bed before resting up and I was so ill for entire month after as my body needed to recover and I had to be extremely careful to not let it cause another relapse. 

Receiving my degree at the Barbican Theatre, pretty amazing and completely overwhelming. I have no idea what he said to me!

So, as fantastic as that day was, the aftermath was horrible and not something to repeat anytime soon, reading a whole novel by myself, with no long term side effects, is possibly and even bigger thing to celebrate. It means that going forward, I have got a little bit better and I can now read on a more regular basis. This small step is a big step in the right direction. 

Let’s Celebrate

I never used to ‘celebrate’ things like this, especially at the beginning my illness, for a couple of reasons. Firstly they come about slowly and gradually, there are no over night improvements for the majority of sufferers. It takes hard work and the progress is small, so I guess I always glossed over them. I didn’t think about them. Secondly, I certainly didn’t tell many people as I usually receive a reaction from people that is complete bemusement. I’m guessing most of my friends reading this did not realise I could not read and did not realise that loads of my degree books were read out to me by my computer or my mum. I understand why I might get this reaction but its difficult feeling you have to qualify this to people all the time, and although I accept people pitying me as its how they show they care or how they are processing/understanding my illness, sometimes I’m not in the mood for it. But last year I read this blog about Staying Positive with Chronic Illness, that made me take stock. It is by a wonderful blogger and youtuber Meg, known as Meg Says. I've followed her from the start of her youtube journey. In fact she's the only ‘youtuber’ I watch regularly and highly recommend both her channel and blog, for a down to earth, positive, loving, informative, creative way with words. In this piece of writing she essentially says it is important to recognise those small steps and mark them out, celebrate them. This really hit home with me and I decided the next time I made one of these improvements I would do exactly that. And the great thing is what you do learn from having a long term chronic illness it is the small things that count. I am always pleased with myself when I manage to have one of my meals downstairs at the table in my daily routine without it confining me to a dark room for the rest of the day, so I don’t have to do anything big to celebrate finishing a book because the achievement on its own is just simply wonderful and positive. However, I did need to do something. Something to mark it out, something to say okay, things are looking up after a horrible time, I feel I've made a 5% improvement, things do get better and yes miracles are real.

My friend with severe M.E. sent me this on a very rare outing (here is a link to her blog). I think this is a perfect message for those of of us stuck in chronic illness to remind us to keep going no matter what. It definitely made me realise that reading my book is a miracle, to me anyway. 
I thought it was really important to mark this achievement somehow, so I decided to treat myself to a bunch of flowers. It was a couple of weeks before I could get out of the house to choose some but I decided upon a bunch of roses. I do love having fresh flowers around and whenever I look at them it makes me smile. In order to remember this small step in the right direction I dried one of the blooming rose buds and will attach a little note with the date and goal. As I make small, but significant improvements, I will dry out a flower from each bunch I buy to celebrate and hopefully I will eventually have a beautiful bouquet of memories to remind me of how far I have come.

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