Things That Changed: ME Awareness week

All aspects of my life changed when I became ill, I am no longer the person I was once, I can't do the things I once enjoyed, but I'm still the same old me inside, and probably stronger if anything. I don't look back in anger, because where would that get me? Although I do look back at myself pre M.E and see how care free I was. I became ill at 19, of course I was care free, but back then I didn't know that the world around me was soon to come tumbling down.


As part of my M.E awareness week posts, I thought I would share with you some of the biggest changes I've had to accept, some of them might not be so obvious.


              M.E Awareness Week


Friendships:
I have lost so many friends. I no longer care, but for a long time I couldn't understand why I would go months without a visit or a simple 'how have you been' message. Good friends should stand by you through thick and thin. It's a sad reality that a fair amount of people stopped making any kind of effort with me because they didn't believe I was ill, never mind severely. Some people couldn't be bothered with me, I couldn't join them on nights out or I just had nothing to offer them anymore. Some people probably just forgot about me or chose to have the out of sight out of mind mindset. I now have a small amount of friends who have stood by me, and supported me, and blogger friendships have replaced false ones!

Who I am:
When you think about it, what makes you who you are? What you do for a job, what you do in your free time, what you like, dislike, believe, they all contribute to what makes you you. So when all of those things are stripped right back and tested, does it change who you are? I think in a way it does. People are always changing throughout life, with age we become wiser and more in touch with ourselves. However I have never felt so detached from myself. I hardly know who I am anymore. I'm not my old self but my current self isn't me either. Let me use an example - I used to like very loud heavy rock music, I can't listen to heavy music anymore because my ears are so sensitive - does that mean I no longer like that kind of music? I feel that way with lots of things. I don't know what plays a part in my personality DNA if you like any longer. All life has been stripped out of me because I have no life. Do I only enjoy the things I do now because it's all I can do? Have I just become accustomed to life spent in bed? I am constantly trying to rediscover myself, but with little luck. I think being inside so much is making me a little crazy!


Fun:

I can't say life with M.E is in any way fun. I have no energy to join in on any fun activities. Socialising now consists of friends coming over and joining me in bed for a while, if we're lucky the TV might be put on for a while. I do try and find enjoyment in the smallest things though. I used to be very outgoing, loved a party, I was always doing something and made the most out of life. I can't do those things anymore. I'm forced to be boring because I have no energy to be funny or do weird things or go out whenever I please. Being able to have fun is a valuable gift. Not everyone can have it but the people who put fun back into someones life are giving them an amazing thing. For me that comes from my closest friends and family who keep me company and make me laugh when they can. What I now consider a fun time, for many healthy people is not fun at all, and something they possibly take for granted throughout their average day. A small joke or a moment of clumsiness might be the funniest thing I see or hear all week.

Independence:
This one is self explanatory. Our whole young lives build us up to become independent adults. I started working and paying my own way as a young teen. I worked hard for my own dance classes, my own clothes. To go from being a very independent woman to being completely dependant on others for everything is a huge shock to the system. I am grateful for the help I receive, for all the times my mum has washed my hair, boyfriend has helped me dress, dad has paid for my medication etc, but I don't want that. I don't want to have to ask to be pushed in my wheelchair every time I want to go out. This is probably the biggest change so far, and it's hard! How do you think you would cope? I went from being free, living my life how I wanted - to this quite literally in a day without warning.

Future:
The future hasn't even happened yet and it has already changed. It's never certain for anyone but for me I know that the future isn't going to be how I had always thought it might be. When your body is so restricted that then means your options become restricted. With every single decision I make for the future both immediate and far, lays a huge risk and uncertainty. Will I cope, could I relapse, will it make my symtoms flare. I don't know if I will ever get better, be well enough to work again, or ever be able to have children. I might always have the burden of M.E on my shoulders. It might never go.
I do however know that my future will be lead with a lot of hope and a deep understanding of what I desire emotionally and physically, and that can only be a good thing, not everybody can say that. If struggle can give you one thing - it's to be grateful for a future at all, not everyone gets that.











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I hope this has helped give an insight into a small amount of the things that have changed. Please continue to share! I'm also recovering well from surgery thanks to everyone who has asked :)
Lots and Lots of loveeee
Hayley-Eszti

13 comments

  1. I don't know what to say to this, as if it isn't hard enough and you have all of these extra things people forget to think about. I don't know how you do it you are so courageous and strong. What you are going through is unimaginable. You shouldnt be in this position as such a young girl with so much to offer, it makes me sad. Lots of love for you and support always x
    ellie

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  2. I can identify with those problems. Only a few friends have continued to stay in touch with our daughter who has CVS, a digestive disorder. She feels totally down on some days, and today we had to visit and take her to the doctor for shots. One of her attacks was making itself known. She never knows when it might hit her, sometimes with no reason that we can determine.

    I did tell her about you and sent her the link, but she'll probably check it out when she feeling better. Today is not a good day for her.

    Take care of yourself.

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    1. I can't understand it myself, it's sad. I hope she does have a look and leave a comment it would be great to talk to her x

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  3. Ellie said it all for me! Have as good a day as is possible!!

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    1. Thanks fishducky! Ducky is a nickname of mine too hahaha

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  4. Hello Hayley. Inger's post sent me your way. It is good to meet you and to discover this courageous young person battling this unforgiving illness. You are very brave to 'come out' and speak up about this disease. I had not heard of it and will spread the word amongst my followers in blogland and FB.
    Stay strong and determined to beat this.

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    1. Thanks for the support and for sharing, I really appreciate it so much :)

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  5. Hi Hayley, thanks for the post, I've put a link to it on the Facebook page of my blog.
    https://www.facebook.com/pages/The-Whole-Damn-Chronic-Situation/458219004271469?ref=hl
    Just wondering, how does it feel to look at those pictures of your life before CFS? Does it make you sad, or hopeful, or a mixture?
    I've just blogged about what I have lost through ME. It's hard to think about.

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    1. Thanks TCS, its hard looking at them, hard looking at photos of old friends who are doing great things too,

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  6. I'm sitting here with tears in my eyes after seeing that three of my blogger friends left comments here. They are very caring people and I hope you will get a chance to visit their blogs after you feel better. fishducky is an old lady, like me, but much, much funnier. If you ever need a good laugh, visit her blog. Jim is a very spiritual person who understands about disabilities, having taught special needs kids for many years, and D. G. has a daughter with a chronic illness, which I didn't know about.

    After reading your story, it is difficult to know what to say. If I were there, I would hug you. Your strength and courage will help you. Finding joy in the smallest things will help you too. I am glad you mentioned that. You have already let go of your resentment toward the friends who deserted you. They were not friends to begin with. And now you are making new friends on the blogs. And that's a good thing. So, I'm sending some virtual hugs to you.

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    1. Oh you are so sweet! Virtual hug back! Xx

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  7. You are an inspiration!
    Love from your friend,
    Em xoxo

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