I want to thank everyone for all the support you gave me after my M.E awareness week posts last week. I didn't expect to have such a positive reaction from people and I was honestly so touched! I received some lovely messages from people all over the world so I am happy I helped spread the message so far! I had hoped to put up more posts than I did but with a very limited amount energy I was definitely being too ambitious! I'll still be posting regularly other M.E stuff as I do normally anyway.
Thanks to the very lovely Inger from www.desertcanyonliving.blogspot.co.uk who let me guest post on her blog, if you get a chance, pop over and have a look at her blog, she has some great posts. Also big thanks to all the people who shared my blog via twitter and facebook, it is appreciated so much.
I hope to get a non M.E related post up this week - I get bored of talking about it all the time! I don't have much more to say today, I just wanted to let you know how great you all are.
Love to you all,
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.
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!
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.
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.
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.
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
I was really overwhelmed with the amount of support I received on Sunday after my International M.E Awareness Day post, thanks to everyone who took time to read the post, or write to me after with words of support and hope. It makes the long and tedious days of struggle that little bit easier knowing people are taking time to support and encourage recovery.
Lots of great things were done all over the world on Sunday helping to raise awareness, The Niagara falls was lit blue and purple - the colours of the M.E and Fibromyalgia badges - how amazing is that, it looked stunning!
Following Sunday, this week is national M.E awareness week here in the UK, and as promised I will be sharing more posts with you in its honour! Unfortunately I had surgery yesterday so I'm feeling the effects of that quite badly so todays post is only a short one but it's full of lots of pictures, yay! This is just to put a perspective on things. People with M.E regularly hear all sorts of ludicrous things, such as:
'You don't look sick'
'It's all in your head'
'You are lucky it isn't serious'
'At least you get to be lazy and stay in bed and watch films all the time'
'Quit exaggerating, you just need to get out and do things'
'I get tired too, I must have M.E'
'You have pills, why are you still moaning'
Plus many other weird remarks. This is the way we humour ourselves in other peoples ignorance and when we just need a much needed chuckle to ourselves.
As always I will be happy to answer any questions you have. I'm really open about everything so if you are sat there thinking 'I wonder how it affects this' or 'do they get this symtom' pop a comment below or email me. Please keep supporting the people with M.E and their families by being educated on it :)
Lots of Love,
Today is international M.E awareness day. It is a life changing debilitating disease that attacks every system in the body. I have had M.E for almost 2 years now. It is an incredibly ugly neurological illness and very often destroys lives. Severe cases leave people bedbound, housebound, confined to a wheelchair and in need of everyday care. In some cases kill.
The affects of M.E are on a par with Aids and Cancer, it's chronic and there is no known cure or effective treatment. Despite M.E affecting millions of people around the world there still seems to be a stigma attached to it by both the general public and sometimes even the medical profession. This is unacceptable when people are seriously struggling every single day. I would really appreciate it if you could continue to take a few more minutes to read on and help ditch the stigma and incorrect misconceptions attached to M.E.
- M.E - often known (controversially) as chronic fatigue system is MUCH more than being tired. There are over 60 symptoms involved many of which are debilitating in their own right (such as fibromyalgia, immune system disorder, chronic pain, deficiencies)
- The most severe cases of people are left paralysed, unable to speak, bedbound, housebound, in need of care and some need to be fed through a tube. Many people are forced to use wheelchairs or other mobility aids.
- Anyone can get it. Children, teenagers, adults and the elderly.
- Little or no support is offered by the medical profession. It is incredibly difficult to diagnose and patients are often dismissed by doctors as having a mental illness and many are given incorrect treatment that ultimately makes them more sick.
- Friends and families often don't know how to cope or believe the person suffering is genuinely sick. This is often down to the stigma that dates back to 50 or so years ago but has somehow managed to stick around today. It IS an approved PHYSICAL ILLNESS.
- The cause of the illness is not known. Any theories are merely speculation.
- Basic things become immensely difficult or impossible, washing, dressing, reading, concentrating, having a conversation, sitting in a chair are amongst them - which makes day to day life extremely difficult.
- People with this illness are prone to further problems due to weakened immune systems and as a result of their body shutting down. It then becomes a vicious cycle.
- M.E is often lifelong. Until more funding and research is put into action, it will continue to be this way.
People with M.E are suffering everyday and desperately need support. If I have helped raise awareness to one person I have done good. I write regularly on my blog about my journey with M.E so have a look at my previous posts if you would like to see how I have dealt with it day to day so far and how it affects me emotionally. If you would like to ask me any questions please do so below (you can comment anonymously if you prefer to do it that way!) I will be writing and raising more awareness for the rest of the week as May 12th - 18th is national M.E awareness week so follow or subscribe if you'd like to read those too (If you are not a blogger you can subscribe by email or just add to your favourites) Thank you so much for reading, and please share spread the word.
Lots of love,