Monday, 8 July 2013

No regrets

AAAHHHH I typed out this blog post yesterday but apparently they won't save unless you have a post title. So here goes again. I want to share with you all a quote from Jojo Moyes Me Before You yes that book again but it has really stuck with me. So here goes:

Lou: Don't you think it's actually harder for you... to adapt, I mean? Because you've done all that stuff?

Will: Are you asking me if I wish I'd never done it?

Lou: I'm just wondering if it would have been easier for you. If you'd led a smaller life. To live like this I mean.

Will: I will never, ever regret the things I've done. Because most days if you're stuck in one of these, all you have are the places in your memory that you can go.

The other night I dreamt that I was trying desperately to gather up all the paraphanelia that symbolises some of the things that I have done in my life. There was horse riding gear and a horse that kept cuddling me, running gear, school books and lots of stagemanaging tools and steel toe capped boots. But try as I might I could not hold onto it all nor could I find some of it as it was burried under lots of other stuff. I even dreamt about being at the theatre and falling asleep. I am not one to usually give much air space to my dreams, generally because they just reflect the things that I have done during the day or hopefully will be doing in the next week or they are a bit too out there. However this dream really struck a chord with me. It is as though it decribes my life prior to M.E and for a time with it. Showing all the things that I have desperately tried to hold on to and all the things that have become lost in the midst of this condition.

As I have mentioned in the post things I learnt at clinic: Personality after I learnt that somehow some of my type A tendencies could have played a small part in me developing M.E I went a bit nuts. I was angry with myself for having lived the way I had. Always busy, always thinking and planning. I blamed myself for having M.E. I called myself every name under the sun, out loud in rage and tormenting myself with constant negative thoughts about myself and what I had done. It was only when I confessed these feelings to Mum because I did not want to go back to the clinic because they had made me feel like that, that she helped me to see the error in my thinking. Something that deep down I knew. Firstly, that medically or physically or scientifically, whatever way explains why someone gets M.E never says "it is completely down to a type A personality" and if it were then M.E would either be a lot more prevalent or people would be much more laid back to prevent getting it. Secondly, that there was nothing wrong with the way I had lived my life. Thirdly, that she was extremely proud of me for having lived as I had, achieved all that I had off the back of everything that had ever brought me down and how I am still smilng and wanting to pesevere. Finally, she asked did I have any regrets about all that I'd done before M.E, well actually lastly it was "you absolutely are going back to the clinic," which I knew I would anyway I just needed to let off steam.

But back to the point about having regrets and to marry in that quote. My honest answer is no, no I don't. I am who I am today because of everything that I have lived through, everything that I've took a deep breath and picked myself up by the bootstraps to do. That despite many health issues, grief and severe depression I still achieved what I wanted to. Despite some people saying that I couldn't. Despite my own head saying that I couldn't. I have said "no, there is more to life than this." It has made me see that if there's something that I wanted it was in my power to do it for myself. Life is for living and all that. Especially when you have been through rough times. I have tried to give everything that I had to what I chose to do and it's me that's done that. So not to blow my own trumpet but that's pretty amazing. I have achieved academically and seen places that I had dreamt of going. So no there are no regrets. M.E or not. That's courageous, that's determination and that is what is going to get me through this too. It is what I need. So it is not just about the things that I have done but how my personality has actually developed through all the rough times to help me through and let me fight for the good things. Surely that is no negative thing. Certainly it's difficult to remain positive all the time, who can? But I recognise that I have every right to feel down at times, to miss the things I've lost and had to give up. That's a normal feeling and I don't beat myself up about feeling that way. I just try to cope with it and talk about it before it all gets too much and spirals out of control. I dread to think what I would be like if I didn't  have the motivation or strength of charachter or even just the sense of humour to get through this. Back at being too frightened to step out of my bedroom. Back to feeling the need to self harm. I don't want that ever again. I can't regret it, because it's a horrific all conuming illness that takes no prisoners. But I can be proud that every time I have a tough day of pain and fatigue, or have to stay at home because I'm too ill or can't plan something or frustratingly when I can't recall certain words or form a coherent sentence. I can be proud that I don't want to physically or emotionally punish myself. I can get angry and not even have harming thoughts and that to me shows how strong I can be. How much my personality is an advantage to me now more than ever. So, no there are no regrets.            

I can't totally relate to the quote though (after all I am not manically depressed anymore and I'm not a quadripalegic) in that I don't solely rely on my memories to transcend me out of reality. Yes they're nice to look back on and relive occasionally, especially when you're lying in bed in agony. But there are plenty more memories to be made and things to look forward to. Even with M.E. Even with being in a wheelchair. Pre diagnosis but when I was pretty certain that I had M.E for I had suffered for 3 months without improvement. I was on holiday (perk of not being able to stay home alone) and we went on a boat trip. Off one island the boat moored and most people went swimming. I am petrified of deep water and although I can swim it is generally to a lilo if I'm not already on one. However standing there watching people swim and having fun made something in my head switch. I just thought "I am here, that looks like fun. When are you going to get to do it again? Who knows if I'll even be able to go on holiday again." I also reasoned it with " all these people won't let you drown." So, I did it. I got in the water (absolutely bloomimg freezing, why were people enjoying themselves?) Obviously I went down the ladder and not dived in I hadn'tchanged my thinking that much and I was terrified the entire time that I was in the water. But I did it. After that I knew that somehow I would deal with having M.E in as good a way as possible. Yes, I will occasionally throw my toys out of the pram but that too is good as I'm letting myself feel. 

I have actually even managed to go horse riding twice whilst having M.E, which is a big achievement. Once on a friends horse so I could take it easy and not push myself too much and actually I didn't suffer that much afterwards. Well actually I did but that was because off the back of horse riding I was feeling a bit invincible and I pushed myself too far and it was also my friends birthday. The second time was a bit different . It was far too much and far too long. It definitely made me remember how much horse riding can be hard work. I had huge bruises on my calves from gripping the saddle too much to try and give me extra support. But again I did it and in the process made new memories. The latter will definitely always be unforgettable as we rode out on a nudist beach and what was worse was that they were taking photographs of us. It certainly was an experience.

Well, I know I won't be horse riding or swimming for a while with needing a wheelchair but there are plenty of other things to look forward too when I can manage them. Even just doing my online Greek lessons. It's a new experience, it's challenging and if I ever did manage to go horse riding on holiday I will be able to say "can I stop please? I need to lie down." Going back to the dream. Yes things have become lost, my career and people that simply do not understand and especially a lot of my independence. With needing help to the bathroom and batheing. My world has had to become smaller in order to cope. In the quote Lou asks Will whether it would have been easier to have led a smaller life. Well at the time of coming back from that first clinic session I'd have said yes. It certainly is a big change and a case of polar opposites but like Will I have to say no it wouldn't have been easier. You should never regret living your life or living in caution because somethimg 'might' happen. As long as you aren't hurting anyone or yourself. I may be in a wheelchair, I may meed a commode in my room for when walking is just so sickeningly painful and I may rely alot on my parents for my day to day care. But there is plenty more living to do and plenty more buses to fall asleep on. It just has to be on a smaller scale and when I can. When I finished typing this post the first time I was off to my cousins for a lovely dinner and gossip in the sun and I had a great time. Yes I needed my chair and my legs were sore and yesterday I slept alot but I did it.

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