Lisa's story

Hello,

It is incredibly difficult to describe how debilitating and life changing M.E. is to a non-sufferer. Foggy thinks that having a range of sufferers 'guest blog' with individual stories will show the wide range of symptoms and levels of suffering. This particular blog is written by Lisa who has severe Myalgic Encephalomyelitis (M.E).

Here is her story....

Hello there, I'm Lisa (@2lisaland); I wanted to share with you a few of my experiences of having M.E. I went to university as a mature student and had never had any health problems at all until I caught glandular fever. Overnight I went from having a full and active life to only leaving the house for doctor appointments.

I was told it might take a few months to get better, but it didn't. It became M.E. and, up to this point, I've had 5 years of being housebound. I did have a period of much better health for a few years but then relapsed after catching a stomach bug. I had heard you don't relapse for as long or as badly, but it turns out that isn't true.

M.E. for me, feels like having the achiness of flu mixed with complete exhaustion. My body feels like it's wearing a suit of armour, dragging it up and down the stairs is quite a feat. I have bad brain fog so writing this is a struggle and I have to write little bits and then put it down. I can't read books as by the end of a page it's all just a blur. I get exhausted very quickly when concentrating on a conversation. I often have pain in my legs, my temperature can be all over the place and I get erratic heart palpitations which I find quite unnerving.

I wake up feeling like I've run a marathon so spend most of the morning in bed listening to the radio to give my body a chance to recover. I carefully split the rest of the day into chunks of watching TV and lying in bed listening to music or radio 4. I need help to wash my hair and rely on others to do the housework, shopping and walking the dogs.

 

Lisa - Foggy campaign supporter

I miss so much about my previous life, like chatting with my friends, going to the cinema, going out for a coffee or for a meal, being able to walk round my garden. I miss not being independent and being able to trust my body in a way that I completely took for granted when I was well. I miss my job. That might sound strange but I worked in a role where I was helping people alongside colleagues who were like minded to make a difference. I miss being part of that community. It is hard to be on the sidelines when so many people have it tough and need help. Now I am the one needing the support.

M.E. is a difficult illness to live with. It dictates everything, is very debilitating and yet invisible. Not only is there the physical side to contend with, you also have to deal with the endless frustration of being ill and the grief of losing the life you once had. It takes a lot of courage to adapt to a new way of living and let the old one go. I don't always recognise that courage in myself but can see it clearly when I look at other people with the illness who are a source of comfort and inspiration for me.

I've adapted by finding new interests. I've started listening to classical music which can be very soothing or deeply emotional. I've watched many gardening programmes and learnt about plants and design. I enjoy a lot of sport on TV and have discovered radio 4 which is full of comedies that make me laugh, dramas and programmes which teach me something new. A good boxset or audio book is a godsend. Whilst all these make me feel like I've reached my 60s, many decades too early, they occupy my time and help it to pass more easily. I've realised I need to take enjoyment from small things, value the things I do have, and let go of how I think life should be. This is something that takes practice and discipline and some days it is easier than on others. I don't feel I'm fighting M.E.. I feel I'm trying to just get through each day as best as I can with as much peace and grace as I can find.

I am deeply grateful to those who have stood by me and continually supported me. They have kept me sane as have my 2 gorgeous dogs who make me laugh and love me even though I can't take them out for walks or have playtime.

I am writing this because the illness and its impact is rarely understood and it takes a lot of energy to explain it to people. Hopefully by raising awareness of the reality of the illness we can at least save sufferers the feeling of isolation that comes with having an illness that is so misunderstood.

Lisa x

Foggy's blog - from a different perspective - 'Fighters'

Hello!

Foggy has asked a handful of M.E. sufferers to write a blog post so that readers can see/understand how varied and wide ranging M.E. can be. He has chosen someone from each of these areas: Young, severe and 'recovered' to tell their story. This blog post is written by an 18 year old young woman called Daniella Russo.

Beautiful 'fighter'..... does Daniella look ill? Just shows that M.E. is an invisible illness.

Hello there!

Before I begin I'd better tell you a little about me- paint the picture so to speak. My name is Daniella Russo and I am an 18 year old cat-lover who is addicted to chocolate, life and shoes... and I just happen to suffer with chronic migraine and- just my luck- another chronic illness called M.E.

My Dreams:
- A good, restful nights sleep!!
- To work for Disney- preferably as a Princess with a Palace.
- To be able to hold a normal job.
- To be understood and loved.
- To marry Channing Tatum/ Olly Murs/ Ryan Gosling (I'm not picky -we can all dream!)
- To be happy.
- To be healthy.

My Fears:
- That I can't reach my full potential and the very high standards I set for myself.
- Spiders of all shapes and sizes, irrationally so!
- That I won't find "The One" and love my fairytale (because how can you meet people when you spend your life in bed- well, not the kind I want to meet!).
- That I will feel like I have slept or watched my life go by...
- That many more members of my family or friends will fail to understand my illness and I will lose them too; I have lost many already.

Hopefully you feel like you know me a little better now and, if not, you probably think I'm a little bit nuts... which is quite accurate, actually!!

Back to business:
I was diagnosed less than a year ago, despite doctors recognising that all these symptoms were progressively ruling my life since 2011. I developed this condition following a bad case of glandular fever; however, post-viral fatigue (leading to M.E) is not the only cause for the onset.

One of the main issues with M.E is that it isn't spoken about enough. This means there isn't enough: education; research; funding or compassion for this disabling illness. Which is why (with many thanks for the invite to share with Foggy) I am going to share my fight and, hopefully you'll agree, my success, up to this point, with you.

So, to have looked this far and to have reached this blog you must have some link to M.E., I assume. Therefore I welcome you! Whether you're curious to learn more or suffer yourself and are searching for someone who understands, I'm going to give you a really brief lowdown on what it is and what it means for me and my life.

Actually, let me backtrack a little now. As a sufferer, I can't seem to find a definition that does it justice. Perhaps this is because it is a different experience for everyone with M.E as there are so many symptoms and problems which occur as a result of it. The frustrating thing is, because it is different for everyone, there is no one definition that summarises M.E and this means diagnosis and understanding is extremely difficult. So, in an attempt to summarise it, I'm going to write my own, personal definition- so here goes!

To me, M.E is an overwhelmingly disabling illness that, whenever I want to do something, tries to stop me from succeeding by attacking: my body, my spirit and my mind. It's as if, out of all your bodily functions, only a few can work fully at any one time. This means you're never at full health and have to always fight through something as best possible. Basically, it's one thing after the next!

But that's it- it's a fight. Which means it hasn't won yet.

Inevitably, due to my age, the main impacted area of my life far has been my education; I suffered through my GCSE's, AS' and my final year of A-level exams.

For my A-levels, most recently, I studied: Sociology, Business Studies with Economics and English Language. In retrospect, it was my most difficult year yet battling M.E. as I consistently failed to maintain concentration to work and the energy necessary to get up to attend college. Often bedridden, I pushed myself to the extreme on the rare occasions  I felt I could work.

In the lead up to my exams I was shattered; this isn't any kind of tiredness someone of relatively good health can comprehend- this is the unspeakable lack of ability to move or think... It's zombie mode! In fear I was sleeping my days away, I often doubted whether I should sit my exams at all as I didn't possess the energy to catch up what I had missed due to my low attendance, let alone revise. So why bother to put myself through all this pain and struggle to force myself to sit them? After all, I thought, I was surely going to fail myself and be disappointed beyond belief... it would only be a reminder of how I am not able to live up to my potential.

Well, I couldn't have been more wrong. I am now the proud owner of 2 As in English Language and Business and an A* in Sociology at A-Level!!!! (Yes, I'm a nerd!) *Well done!!! Doggy snogs from Foggy!!*. I also have an unconditional place at my chosen university (NTU) to study Marketing, beginning September 2015; this is due to me having to take the decision to defer my place in order to improve my health after being advised by both my teachers and- more importantly- my doctors. I was extremely lucky my parents were supportive of my decision.

I've been told on numerous occasions that it seems to hit those who want to take the world and run at 100mph to grasp everything in life and do as much as possible. I've been told that people could see me as "The next Prime Minister" if I wasn't suffering with illness... Who knows, perhaps I still may be.

I hope it proves and inspires other young sufferers, we can still achieve- and it means more when we do because we've had to overcome the full equivalent of trying  to juggle whilst completing a Marine-level obstacle course called Myalgic Encephalomyelitis.

Yes -it's disabling. Yes -it may feel like it has us defeated sometimes... BUT, WE ARE FIGHTERS. And I sure as hell think I'm giving it a good run for it's money- I will not be held down, not today and not tomorrow.

We are a success. Somedays it may only stretch to (as most would consider) basic chores such as showering or doing the dishwasher... But others perhaps we can be unstoppable. It may take us longer. It may be harder. It may feel damn right impossible. But WE ARE a success.

For those who don't suffer: all we can ask is that you try to understand us (even if it makes no sense), love us, don't abandon us, be patient and support us. Also, thank you for caring enough to listen to my story.

For those who do: 'good luck' for the future and 'well done' for surviving and fighting it all this far. We can do it and I am confident that it will improve for us in the future. With dedicated angels (like Foggy and Sally- and all others who are fundraising and fighting for us), I believe there will be a cure; I'm currently part of some research being undergone by a few universities, so there is hope. Until then, organisations (such as the ME Association) will continue to educate others and support us in our rights.

... Or, even better, you can tune into this lovely blog to smile with Foggy.

Anyway, for now I will say my goodbyes because my cat is nagging me for her lunch! (...and my tummy is nagging me for mine)


Thanks for listening- reading?!

Ciao,   Dani x

Foggy's Bucket List

Foggy's Bucket List

• Sit at the top of the Eiffel Tower
• Ride a motorbike
• Go on the Eurostar train
• Fly a kite
• Go Go-karting
• Give Mickey Mouse a doggy snog
• Go skateboarding
• Meet Holly Willoughby and give her a doggy snog
• Go hot air ballooning
• Appear on stage
• Eat pizza in Italy
• Ride a horse
• Have photo taken with Neighbours cast (esp Bossy the dog)
• Have fun at a Hawaiian Luau
• Run a marathon
• Sing at a karaoke night
• Go diving in an ocean
• Have a go at trampolining
• Ride in a rickshaw
• Go ten pin bowling
• Play rugby
• Raise £10k for ME Association

If you can help Foggy do any of the things on his bucket list please contact Sally at mefoggydog@gmail.com