Today I am taking a detour from cupcaking (slightly) to tell you about a very misunderstood and badly publicised illness, M.E (also known by some as Chronic Fatigue Syndrome). I toyed up with publishing this as I didn't want people to look at me differently but then, I thought hey the more good press on this illness the better!
I have had M.E. for over 11 years and it has caused a lot of problems but has also helped me overcome these problems and has not stopped me from achieving what I have today - a Bachelor of Arts, a Master of Arts and now my own business. Of course, I have had to adapt my lifestyle and make sacrifices - it has been, by no means easy. But I have peservered and I have never given up on the thought that some day I will get better.
So, what is M.E. you ask? Well the problem with M.E. is that as of yet, there is no known cause or cure so it is just something that most doctors say 'sorry, there's nothing we can do. You just have to live with it.' It is an extremely debilitating illness which causes extreme fatigue, migraines, muscle pain and spasms, light sensitivity, nausea, brain fog (confusion/slow working brain!!) and a miriad of other life altering symptoms. A good analogy would be to imagine you had an all night drinking and dancing session, followed by a bout of the flu and a hangover but that it lasted 11 years (and counting!)
The problem with M.E. is that people see you on a 'good' day and think you're fine, but most people with M.E. don't let you see them on a 'bad' day when they are too tired to move or in too much pain to get out of bed. Just like you wouldn't want people to see you with a hangover!
If you would like more information on this misunderstood illness please do visit http://www.meassociation.org.uk/ or http://www.ayme.org.uk/ (a website for young people with M.E. who without I would have felt even more isolated.)
Now for the positives! Yes, I have a debilitating illness, yes, I find day to day life a struggle but no, I am NOT going to let it stop me. In a way, I am one of the lucky ones, I am able to live a relatively 'normal' life in comparison to some of my very dear friends who are housebound and are too ill to leave. This blog is for them as much as it is for me.
Due to my illness, I found that a 'regular' job would just not cut it. People do not understand that I am not 'lazy' or 'depressed' but that I have a physical illness that affects my ability to do a normal job if I do not take certain measures. With cupcaking, I can work around my illness whilst doing something I love. I can take rests when I need to, I don't have to worry about the boss not believing me and I can work to my own schedule. I do a lot of my admin in bed so I can save my energy for the things that are important to me - making the best tasting and looking cupcakes in Hertfordshire (and who knows, maybe one day the world ;). M.E. has made me even more determined to be the best and to achieve everything I want to. I don't want people to feel sorry for me, I love my job and I love making people happy and perhaps without this illness I may not have gone into cupcaking. I could be sitting in an office falling asleep from boredom opposed to from having made 100 cupcakes for someone's special day!
So please, before you go to call someone lazy think of me and the thousands of other sufferers who battle everyday against prejudices and this illness to try to live a normal life. Oh and have a cupcake ;) This May I will be selling M.E. Awareness cupcakes for £2.00 each with 50p per cupcake going to M.E. charities - so do spread the word! And please do have a look at this short video that my friend and fellow sufferer Daisy Hill made for MEAW: http://www.youtube.com/watch?v=iDttA7kN-30&feature=share
I hope this blog has been informative and helped raise some awareness. Please comment, share and smile :) Normal cupcaking will resume very shortly!
I have had M.E. for over 11 years and it has caused a lot of problems but has also helped me overcome these problems and has not stopped me from achieving what I have today - a Bachelor of Arts, a Master of Arts and now my own business. Of course, I have had to adapt my lifestyle and make sacrifices - it has been, by no means easy. But I have peservered and I have never given up on the thought that some day I will get better.
So, what is M.E. you ask? Well the problem with M.E. is that as of yet, there is no known cause or cure so it is just something that most doctors say 'sorry, there's nothing we can do. You just have to live with it.' It is an extremely debilitating illness which causes extreme fatigue, migraines, muscle pain and spasms, light sensitivity, nausea, brain fog (confusion/slow working brain!!) and a miriad of other life altering symptoms. A good analogy would be to imagine you had an all night drinking and dancing session, followed by a bout of the flu and a hangover but that it lasted 11 years (and counting!)
The problem with M.E. is that people see you on a 'good' day and think you're fine, but most people with M.E. don't let you see them on a 'bad' day when they are too tired to move or in too much pain to get out of bed. Just like you wouldn't want people to see you with a hangover!
If you would like more information on this misunderstood illness please do visit http://www.meassociation.org.uk/ or http://www.ayme.org.uk/ (a website for young people with M.E. who without I would have felt even more isolated.)
Now for the positives! Yes, I have a debilitating illness, yes, I find day to day life a struggle but no, I am NOT going to let it stop me. In a way, I am one of the lucky ones, I am able to live a relatively 'normal' life in comparison to some of my very dear friends who are housebound and are too ill to leave. This blog is for them as much as it is for me.
Due to my illness, I found that a 'regular' job would just not cut it. People do not understand that I am not 'lazy' or 'depressed' but that I have a physical illness that affects my ability to do a normal job if I do not take certain measures. With cupcaking, I can work around my illness whilst doing something I love. I can take rests when I need to, I don't have to worry about the boss not believing me and I can work to my own schedule. I do a lot of my admin in bed so I can save my energy for the things that are important to me - making the best tasting and looking cupcakes in Hertfordshire (and who knows, maybe one day the world ;). M.E. has made me even more determined to be the best and to achieve everything I want to. I don't want people to feel sorry for me, I love my job and I love making people happy and perhaps without this illness I may not have gone into cupcaking. I could be sitting in an office falling asleep from boredom opposed to from having made 100 cupcakes for someone's special day!
So please, before you go to call someone lazy think of me and the thousands of other sufferers who battle everyday against prejudices and this illness to try to live a normal life. Oh and have a cupcake ;) This May I will be selling M.E. Awareness cupcakes for £2.00 each with 50p per cupcake going to M.E. charities - so do spread the word! And please do have a look at this short video that my friend and fellow sufferer Daisy Hill made for MEAW: http://www.youtube.com/watch?v=iDttA7kN-30&feature=share
I hope this blog has been informative and helped raise some awareness. Please comment, share and smile :) Normal cupcaking will resume very shortly!
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Fab post Lucy :)
ReplyDeleteReally interesting to read. Although I don't suffer from ME, I do have an 'invisible' illness which too affects my day to day life. Its such an inspiration to see people getting out there and achieving, and I hope in a few years once i've graduated I can post something similar about how i've overcome my difficulties!
ReplyDeleteKeep it up xx
I to have had M.E for a long time, it is easy to give in and let things get on top of you, but I like you thought no this wont beat me, so after living with M.E. for 12 years I now think well lets get on with it and it's not going to rule my life I'm going to rule it. I do have bad days back they are few and far between, life is good so make the most of it, wishes you all the very best x x x
ReplyDeleteThank you for posting such a wonderful, inspirational blog. I know it's not easy for us to show our vulnerability, so thank you so much for making this huge gesture. As I mentioned in my tweet, I've had M.E. for 5 years now. For the first 2 I varied from completely housebound to walking around with a stick. Once in a blue moon I would find a spurt of energy and I'd maybe be able to have one dance or struggle through a con or even stay up too late (& drink too much :S). I would pay for it later, but every now and then I felt the need to just live. Unfortunately some people saw that best and asumed I was faking it all... Let's just say I understand how it is feels to have your disability questioned :S.
ReplyDelete3 years on and I feel like I can have a reasonably 'normal' life with far better mobility on most days, but even now I have big ups and downs and I have to be careful not to overdo things. (I had a big relapse last year when I got too involved with my sculpting and tried to restart some studying at the same time - silly I know!). My illness still being so variable has made it impossible to apply for a normal job.
Sorry this is getting a bit rambly! I just wanted to give you some background, so you understand where I'm coming from I guess. The upshot is that I'm incredibly impressed with what you have achieved despite this horrible illness and I find a great deal of hope from seeing your achievements. I'm not sure what I'd like to do, something arty, maybe with my sculpting or jewelry design or graphic design, but you have given some hope that if I put my mind to it then maybe one day I will make something of it.
I hope I wasn't coming off as too negative earlier either. Bad days tend to make me feel a little pessimistic about recovery and I struggle with self worth issues and depression and I feel like some of that (read a lot - sorry!) came through in my tweets and I'm sure I was saying entirely the wrong thing :S.
Anyway, long ramble almost over. Thanks again for being awesome and inspirational and I wish you all the best in your business and life and recovery x