Wednesday, 6 November 2013

Canary in a Coal Mine Preview

A lovely bloggy friend shared this on Facebook over the weekend, which I have been meaning to share all week. It is a short documentary done to try and improve awareness of Myalgic Encephalomyelitis. This brief video identify only a few of the difficulties that people around the world face, but I thought it was a courageous effort to bring people's awareness to the fact that this illness is REAL! It is not in our heads and even though we might look well to most of the world, it doesn't mean that we are feeling well. Claims that people with M.E are lazy, is such an insult to the millions of people who have to struggle with this debilitating condition every day, in fact the majority of us are Type A personalities who are generally over achievers and strive to get the very most out of life, we do everything and anything and all at once. So the reason that we are now unable to do things, is not as a result of laziness, but simply as a result of the fact that our bodies are burnt out and that they don't operate like most healthy people's. Our sympathetic nervous system is basically in a state of shock and this results to everything shutting down inside, yes, it does affect all our organs, and for some a great deal worse than others.

I have been ill for 4 years now and in the early years, I could hardly move, without feeling pain and complete and utter exhaustion, together with a whole host of other problems. This came shortly after a time in my life where I was blasting single tracks on my bike and walking with my kids most days!! I don't want to bore you with the details of my illness, but when I watched this video, I just felt that people  need to see it. I am a text book M.E patient, therefore meaning that my illness started as a result of a virus. I contracted Viral Meningitis first, then Anterior Uveitis, then Shingles, then Labyrinthitis (the straw that broke the camels back). By the time I fell ill with M.E I had already had at least 20 or more episodes of shingles, something I still struggle with on a very regular basis, despite being on a suppressive treatment program. Surely with a viral history like this, one would think that the doctors would identify the problem and start looking at ways in which to improve immunity, no instead the doctors told me I had sever anxiety and depression and told me that anti-depressions and exercise will sort it all out. Being particularly stubborn in nature, I got on my bike and thought right, I will ride this 'mental problem' out of myself even though I knew something much bigger was going wrong! Well, what a big mistake that was, I didn't get up the next day and for many months after that. Exercise is the VERY LAST thing people need in the early stages of M.E, they need rest and good quality rest. The most infuriating thing I have experienced since being 'officially diagnosed', was sitting in front of a Doctor who told me that she didn't 'BUY' M.E, what a disgrace!!!

I know that I am really fortunate, and there isn't a day that goes by where I don't feel grateful that I am no longer in bed most of the time or moving around like a zombie for the rest. I have learnt many lessons through my journey with M.E, but one of them is to be grateful for the little things in life and fortunately for me I am a really positive person, which has been a blessing.  I am lucky enough to be up and about for longer periods in the day now and I really enjoy spending more time with my family and seeing my children grow up and there is also the enormous pleasure I get from creating. This is all still only largely happening in the confines of my four walls, which can drive one a little doolally sometimes, but I have gotten much better at accepting this and being happy with it. Even though I can drive again, only for very short distances, I have to calculate everything, how many steps to the entrance of the shop, can I park right by the door as I still need the wheelchair for longer distances. If it is any further, I have a choice, do I go and pay the very HEFTY price tag that comes with it tomorrow and the next few weeks after that, or do I stay? I can't walk my kids to school even though we live a stone throw away from the school, I can't take them to a proper park and parts of my days and weekend are still spent lying in bed. Some days I feel like rebelling and I read blogs on my phone, but I know it is taking away from the rest my mind and body needs and it usually results in me not coping very well later that day, but sometimes we need to live a little on the wild side right?! I still need at least 2-3 hours in bed every day and on the weekend I don't get up till 1.30pm, unless it is the Treacle Market (once a month) where I have my little treat, but I know there is always a price to pay, but for me a price worth paying.

About a year ago, I started a blog about my journey with M.E, I managed all of two posts as I just couldn't do it. I just couldn't write about how I was feeling and for me it was simply just much more of what I was already experiencing every minute of the day, possibly a bit too negative for me, possibly a perspective problem on my part, but I decided against it. Instead I wanted to look at pretty flowers and lovely cakes and pretty crochet. There are some really amazing M.E blogs out there that offer so much support for people struggling with this. For the first two years I was completely unable to read blogs or go on the Internet, in fact I couldn't even read the most basic books to my kids. So in January I decided that I needed to do something about this dead brain of mine, so with a view to do some 'graded exercise' with my brain, not my body as prescribed, hopefully a chapter that will follow in the near future, I started Cosmos and Cotton. I am still really struggling with this and most days it really takes it out of me to read and write, so writing this blog is really hard work for me, but I have resigned myself from the fact that it is not going to be the most coherent blog in the world and I am most certainly not a gifted writer, but it is my little place where I can come and sit and hopefully start the engine for a little fun.

It wasn't my intention to write about M.E on this blog, but this is my journey and seeing it plays such a big part in my life, I need to make others aware that more needs to be done to get funds for the necessary research so that one day there will be some positive treatment that will help people. It kills me to know how many young children are missing out on a life because of their struggles with M.E, why oh why?!! I know they are doing studies with various different drugs, but we are still a long way away from having something out there to make 'professionals' respect and treat this condition in the same way that they deal with any other major illness.

Knowledge is power, so please watch this video and share it with your family and friends so that others can also get a better insight into this very debilitating condition.

Thank you for reading all this, I know it was a mouth full.

Warm Wishes


  1. Dear Hannapat
    I have just watched the video. There needs to be much more research into this - it obviously has a devastating effect and cannot just be dismissed... I hope you manage to enjoy your good days and get through the bad ones, with help from family and friends. It is at times like these that we find out just who our friends are.
    It was really brave of you to write about this - you should feel very proud of yourself.
    Best wishes

  2. You did a great job with this, I know how hard it is to write about how this horrible disease takes over you're life, I saw the clip for the film on facebook the other day, I also saw a very apt description too, which said 'Aids used to be a death sentence before drug theraphies were developed, but ME is a life sentence. I've been ill for over 20 years now and the medical profession can do nothing to help me. Had a bad week with it really, when I saw my GP seven weeks ago, as in relapse since August can hardly get out of bed, she said you need to see a ME specailist and a Neurologist, who is understanding of the condition, I'll get the girls in the office to track a neuro down. I've heard nothing since, even though I found and gave them the details of a Immunologist out of area with a special interest in ME, I spoke to the Dr on Monday and she said 'I meant to call you, there is no suitable neurologist in the area, really a NHS with no Dr's !! As for a ME specailist she had no details of the one i found, and said there was no point reffering me to the local ME service as it's a shrink and a physio' which even she realises is a waste of time. She agreed to try and apply for funding for the Immunologist out of area, but she said it could be a while with lots of hoop jumping. The whole system is crazy, that seriosuly ill people can just be left like this with no help, other than CBT and a bit of goal setting. A friend told me today, whos daughter is studying to be a vet, that animals can get ME too and which animals, Race Horses and Greyhound, sums in up, there not lazy!!!!! and the treatment they put them down. Thanks for writing this it really brave of you, sorry for such a long comment, but thought it might add to the awareness for this post. Clare xxx

  3. Hello Hannapat, your post is very thought provoking and stirring. I knew you had a wheelchair, but I did not like to ask why. I think you are doing the right thing by focusing on what you can do and what you like rather than on what you can't do. I am sure that it is very frustrating when you can't do things with your children, or stay out all day if you want to. You are very brave to write about it. I am not thankful enough for the life I have, and your video really brought that home to me. Thank you for bringing this to my attention.#
    Thank you for visiting my blog and for your very welcome comments. I hope you have a good day tomorrow, with all my love,Linda xx

  4. Oh Hannapat, I so wish and pray that all of this will become easier for you, and others suffering similar symptoms, as time goes on. My understanding of your predicament can do nothing to improve your condition but understand it I do, and my experience has also included 'doctors' and so-called 'specialists' who need to learn, from scratch, about the emotional and mental damage they can cause patients by their totally inadequate and cruel outlook on this and other similar diseases. How dare they put patients in a position where they are forced to prove that they really are dreadfully dreadfully sick!!!
    I continue to send much love and warm healing thoughts your way lovely friend, Joy xoxo

  5. Hannapat,

    I have watched the video, but am so moved by your post. You have offered me support and encouragement on my blog, and I love seeing your name come up in my comments. I feel as if I have got to know you a little better. You seem very courageous. I have a friend with ME. It has robbed her of having a family, bur she remains focused and positive. She adores her neices and nephews and is a very talented crafter. You seem very alike.

    It has made me stop and think - really think - about all the stuff that I take for granted everyday. Those simple pleasures. Simple for me, hard for someone else.

    Thank you for this post.

    Leanne xx

  6. I think you're an inspiration and I hope you will continue talking about your situation because it will help others who have the same issues or it will open people's eyes to the reality of it.

  7. Thank you skattie for sharing your story - you are so brave and courageous and inspiring. Keep your eyes looking up and take each day as it comes. I have a friend back in SA who has ME too and I understand just how frustrating and debilitating it can be every day. Ek stuur drukkies en soentjies en liefde xxx

  8. Once again I can almost not find words to express the pain I feel when I read about your daily walk with M.E. You are so very brave to get through it and on with it, the way you do. The reason some people might not think that you are desperately ill is because you were so vibrant and alive before M.E. Your fighting spirit now stands you in good stead. You will not take it lying down - you will fight this disease. You are an inspiration to all of us who are healthy and who complain about the trivial things in life. Whereas you actually have to contemplait if the effort it takes to lift your arm is worth the action you are going to get out of it. We just take it for granted.You are constantly in my prayers and thoughts. I love you so much and am so very proud of you!

  9. Watched the video and my heart goes out to you. I remember watched a drama on TV with Julie Walters years ago, 'Wide Eyed and Legless' based on the story of a woman with ME and I never forgot it, horrible illness. Sending lots of hugs and a gentle (very gentle) reminder for your address so I can post your book to you :) xx

  10. My lovely Hannapat just catching up with your blog and this made me cry. You are so brave and positive and I salute you dear. As you know I have worked with people with the condition a few years ago and I used to feel so angry and frustrated for them all because of the popular myth about the condition - I hope that it is changing slowly but it doesn't make it any better for you as you have to live with it day in day out. Hannapat you are a testament to the wonderful spirit you have within you. Take care and look after yourself dear Hannapat you are one special lady.
    Big special hug to you

  11. Hi Hannapat, first of all i wanted to say that it has been lovely 'meeting' you and that i can feel your zest for life and for your family and creativity coming through all this. Very much so. The film was good to see, I didn't realize myself, how it can be. Take it steady, keep moving through at your own pace, much love Heather X

  12. I can't begin to imagine how hard it is for you to get through your days. This post is so courageous, and you come across as such a strong person. You have reminded me how much I have to be grateful for. Make sure you look after yourself as much as you can. You are in my thoughts. Wishing you the very best Hannapat.

  13. Dear Hannapat,

    I just read your post and I think that you are so very brave for posting about your struggle with ME... I can't believe how "under attack" your body has been for the last 4 years! -- I think the fact that you can keep your blog going in such a beautiful way is truly inspiring...

    So happy to have found you in this bloggy world of ours!

    Take care,
    Beata xoxo

  14. Oh Sti thanks for sharing this on your blog. You are brave for being so open about your illness. I wish I felt I could do the same, but after 20 years of M.E I guess I've learned to disclose my condition cautiously. The immune component is so obvious in both of our cases. How I wish the medical profession took it more seriously. It must be so hard when you were so fit & active previously, & with two precious little ones that you long to pour your energy into. Even though I am so far from being normal, I am thankful for the strength I have, & for the steps I can take, because being bedridden is so hard. Little things like driving, grocery shopping & even sitting up have more meaning somehow. But everything I do is carefully measured in ways a well person would never understand. I must admit I've had a rough week, with my dream of becoming a mum feeling like it's slipping out of reach. I just can't believe after 20 years, my M.E could cost me that. Every day is a struggle. Wouldn't it be wonderful to "feel" truly well again. I don't even know what that would feel like!!
    I too started to write an M.E blog, but after a few posts I didn't continue. I find my current blog is better therapy, & it's become such a lovely hobby of mine. I'm so grateful that through this illness I've met & connected with amazing people like you. It means so much to know we are not alone, & someone understands how devastating this illness really is. I send my love & all my wishes that you will know what it's like to be well again one day soon. Xx

  15. Oh gosh that ended up a long comment!!! :)

  16. I have just read this Hannapat. What can I say? I think you are a remarkable woman, to suffer as you must do every day, and still get on with, and find pleasure in your life, as much as this truly horrible illness allows you to, is testament to this. I wish you nothing but the best. Thinking of you, love, Kylie x

  17. What a moving post Hannapat. You're so inspirational. I've seen ME very close and know how much of a struggle day to day can be. You're so brave and I wish you lots of strength and happiness. Love, Elisabeth xoxox

  18. Oh Hannapat, thank you for sharing this with us. It's good to know a little more about you, about what makes you tick and why you can or can't do certain things. I have to say I didn't really realise until now what effort goes into even the simplest task when you have ME. But you are such a warm, enthusiastic and creative person, and this comes over in your blog all the time. Keep focusing on getting better lovely. xx

  19. Well I had no idea...After reading all of the above, I now know your blog is a miracle to behold...Blogging is hard work of the best kind but you do it so well considering!!
    We are all very hard on ourselves be good to yourself you brave girl...I won't dwell on the negatives because you so obviously don't either...Love of the bestest kind coming your way from me....D xxxx

  20. Hi Hannapat, I'm new to your blog and had no idea you were so ill. My heart goes out to you. In the short time I've come to visit you you seem like such a positive, upbeat person who is so creative and inspiring. I would never guess you are largely living within your four walls. What ever you do to raise awareness of ME is awesome.

    It is so difficult when doctors say they don't "Buy" something when you know it is real because it affects you. Learning to live with a condition or conditions is a learning process indeed and you seem to be adapting. I pray in time there are cures for everything that ails mankind, and that means a cure for ME too. Blessings and hugs. xx

  21. Thank you for sharing such a personal and moving post. ME is something I knew very little about, but feel a I know more about what people go through. I always find your blog to be so lovely and are very inspiring Hannapat.
    Marianne xxx

  22. Such a moving post I know how hard that will have been to write. The time and concentration will have left you drained. Don't forget to email me so that we can arrange our little get together.
    Hugs Sue x

  23. I never even heard about ME before this. So sorry you are going through all that, and feeling all that pain because like the others above who have commented, you are always so full of positivity. Take good care of yourself and I hope that one day soon you will get well. Sending hugs your way.

  24. Thank you for sharing this Post. Such a misunderstood illness. I watched the video and what struck me the most was when one of the ladies said she felt invisible, that's such an awful feeling at the best of times let alone when you are ill and needing help and understanding form professionals :-( And illnesses like these are the hardest because you need energy to fight for the cause which is the one thing ME sufferers don't have! It's always so inspiring over here in your space so I take my hat off to you for being such a positive force whilst dealing with this on a daily basis. Bestest wishes. Mel xxx

  25. Thank you for sharing this with us all. I had no idea that you had M.E. Your positivity and enthusiasm for your lovely family shines through each and every one of your posts. Your blog is very inspirational and I am so glad that you still have the energy to keep this going (and for always leaving such lovely comments - thank you!). Take Care Of You XXXXX
    P.s Esther Rantzen's daughter Emily has suffered with M.E for a long time now here is a link to her story... .

  26. Hannapat, I had no idea you struggled so badly with ME. That makes sense of some of the things you have written about before. What can I say. I admire so much that you are doing your best to try to focus on those bits of your life which give you pleasure and to do things which take so much out of you but give you your sense of yourself. Please don't ever feel like you have to comment on my blog if you don't have the energy: even as somebody who is fit and healthy I sometimes feel overwhelmed by that side of things. Lots of love to you xxxxx