Saturday 25 May 2013

M.E. Awareness Week 2013

This week’s objective is to raise awareness of M.E. – a chronic, fluctuating illness, which affects 250,000 people in the UK. Symptoms can include persistent exhaustion, muscle and/or joint pain, sleep disturbance, feeling ’flu-like and having problems with memory and concentration. For information on how you can help raise awareness, please click here.


So with it being M.E. awareness week I simply feel I want to add a little piece of awareness through my blog. I appreciate that this is not everyones cup of tea, but until I started experiencing just what this debilitating condition can do to your life, family, and mind, I had no idea what M.E really was, so hopefully by increasing awareness we can all make a difference in how people perceive this condition, as its historical label of 'yuppie flue' has been cemented in for far too long!!



Three and a half years my life was very suddenly brought to a halt when we body collapsed on me. I remember it like yesterday, I was sat in a meeting and I just knew I had to get out of there as something really bad was about to happen. I got in my car and all of a sudden I was stuck on the M60 completely unable to function. My brain and body just stopped working, all I could do was pull over and call my husband in a shear moment of shock/panic. From this day onwards, everything I once was stopped being.

There was no more getting on my mountain bike to blast some single tracks, or heading off to do either a Merida, Trailquest or Polaris mountain bike challenge. There was no more packing my climbing rucksack  to visit some beautiful crags around the peak district. My daily walks with the kids was suddenly stopped and has still not resumed. More importantly, my brain stopped functioning, I couldn't string a sentence together at times, I had permanent brain fog, which became so overwhelming at times I thought I was loosing my mind. I have many a memory of being unable to read to my then two year old as the sentences were just too complicated for my brain to process. I was forced to bed with dizziness, blurred vision, inability to regulate my body temperature, and the most intense muscle pain all around my body, and many many more symptoms.This was unlike anything I had ever experienced, even after a days of racing for 6 hours on a mountain bike in the Brecon mountains with 10kg on my back. This was a very unfamiliar experience for me. As it continued the doctors kept telling me that I had a sever case of anxiety and depression, yet only days earlier I was in one of the best phases of my life and thriving with two beautiful kids I loved being Mummy to and a degree only 4 months away from finishing.

I remember going for a walks as I was determined to beat this so called 'depression and anxiety' and then feeling so ill for weeks after that I could hardly get out of bed to look after my kids. The doctors response to this was that I was anxious about walking, complete nonsense, but this is what people with M.E. and Fybromyalgia face everyday, its a disgrace!!! Despite me creating a food and activity diary/log for the doctors which clearly signalled that I had a severe case of burn-out and any small level of exertion created increased symptoms, the doctors still kept putting me on beta blockers (for heart palpitations that was actually a result if adrenal exhaustion and not anxiety) and anti-depressants to combat this 'so called mental problem'. Although I was referred for a MRI scan to see whether it was MS, as the symptoms of M.E can be very similar to MS at times, It took them ten months, standard procedure, before they felt they could send me off for a formal diagnoses, which in the end meant a label of Fybromyalgia/M.E.

This youtube link is worth watching.



So today, three and a half years down the line I am so grateful that my health has improved significantly. Although I am a very far way from being 100% better, I feel that my physical capacity has increased from around 15% to around 55%, which is such a massive improvement and I am so grateful for this. For the first two and a half year I was completely unable to use computers, read or do anything for that matter. I was housebound and unable to drive or do anything. I was unable to sew or do anything that required concentration as my brain simply couldn't function normally and any additional pressure created worsened symptoms. This is how my journey with crochet started, I needed something I could do but only for a couple of minute a day (every cloud has a silver lining!).

In the beginning of this year my health really felt like it was seriously improving, but as we speak I am still learning that these moments do fluctuate regularly, but at least they are there to give me hope that I will return to good health one day, something I have to and do believe. Throughout my journey with M.E I really wanted to start a blog about my journey and in February I finally felt that I could cope with stringing some sentences together and using the computer again and here we are today, maybe not so much M.E related as the initial plan was but then I much prefer the brighter things in life. I spend enough time living with this condition and I really don't feel like blogging about it every day.

I hope that by doing this post today that it has given you some insight into this debilitating condition (please watch the video) and that it will help you understand it better and therefore enable you to support those around you who suffer from this condition. I also want to thank all the bloggers out there for putting a little piece of themselves out there daily to share with others as it has offered some inspiration in my most darkest moments, its enabled me to continue to dream that one day I will be able to go through a day without having to go to bed for several hours and when I can finally ditch my wheels and start walking distances. I believe that day will come soon!

Thanks also to all my friends and family for all your support over the years, without you I wouldn't have coped. The biggest thanks go out to my best friend and husband whom has been my rock. I can only but thank God every day for letting our paths cross, because even in my darkest moments I felt so happy to be here with him. He has been my constant, my strength my rock!!! Without him I honestly don't know what I would have done during the last couple of years. He has stepped up to the task of Mum and gotten up in the middle of the night to feed and look after kids, he has shopped, cooked, cleaned,  you name it he has done it because I could hardly move and I just want him to know that I am so  very grateful for him being so very very strong and for being such a wonderful friend, husband and partner. I love him with all my heart and am so excited that we have so many more years to share in this life!!

Here are some useful links that might support you and anyone you know with M.E

http://www.theperrinclinic.com (thanks to Ray, my health has improved)
http://www.nikigratrixenergy.com (Niki is one the leading nutritionist to support people with M.E)
http://www.meassociation.org.uk/
http://www.royriggs.co.uk/www.royriggs.co.uk/New_Home_Page.html (Roy does the most amazing earthing sheets, which will improve your sleep and also do mats for use of computers)
http://www.gematria.co.uk/acatalog/index.html (amazing supplements that has really helped me!)

For more information on which books to read please see my 'Mindfulness and M.E' post.

Here are some other youtube links that might be worth watching.

http://www.youtube.com/watch?v=dYTnDVHfGNY
http://www.youtube.com/watch?v=iDttA7kN-30
http://www.youtube.com/watch?v=Gzu1A3Qx6Tk

Thank you for taking the time to read this post, I really appreciate your time!! Sending you warm wishes on a Sunday afternoon xoxo


25 comments:

  1. thank you for sharing all this. I think you are a brave person!
    I wish you all the best in your personal journey!!
    xxxx Ale

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    1. Thanks Ale for your comment and for reading this! I appreciate your very kind wishes xoxo

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  2. Hello, what a moving and very personal post. I am so glad you've found the personal and physical strength to write and share it. What a devastating illness to deal with, it must've been a huge shock to go from being happy, fit and healthy to someone who could barely move. The lack of support and understanding from the medical professionals you dealt with would've made it so much harder - I bet you were wondering what the hell was going on! Thank goodness for your husband - he sounds like a gem. Thank you for looking at our linky, you are very welcome to join in if you're up to it/feel like it...I am going to follow your blog - I like the way you write. Take care, best wishes, x

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    1. Hello Kylie thanks for your very lovely comment, I really appreciate it!! It's certainly has been tough, but like any journey it has brought life to new things and opportunities and it makes us appreciate the little things in life and live in the moment. Yes the doctors lack of insight and understanding into M.E does not help matters as it creates a whole load of other problems. I am so pleased I looked at your links and defo plan to do a little post in this (just too hard to resist!!). What a wonderful idea. Similarly I look forward to reading more on your lovely blog. Warm wishes xo

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  3. It's very frightening when your body packs up and you're not sure if its going to restart! I'm glad things are slowly but surely beginning to improve for you. I'm sure blogging will help, give you a creative focus! Keep well my dear, :) x

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    1. Thanks lovely, I am so enjoying blogging, just need to make sure I pace myself. xoxo

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  4. Such a scary story and so glad you are regaining your health. So important. Healthy mind and healthy body. Just make lots of time to relax xoxo

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  5. Goodness, what a rough trot you've had! I can't imagine how terribly frustrating it must have been to suffer for so long without a proper diagnosis. To be honest I had not heard of M.E so thank you for bringing the illness to my attention and sharing your story here - you will no doubt help many people. I hope your health continues to improve and yay to blogging and crochet - you will find lots of support here in blogland :-) Mel x

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    1. Hi Mel, I am so pleased that it at least gave you insight into the condition, it makes the post well worth it. Thank you for stopping by and for taking the time to read in it. I have been amazed just how lovely and wonderful people in blogland are and I am loving this new little community. xo

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  6. it's great that you can share this part of your story Hannapat. Glad your enjoying blogging and crochet, have a good week. Heather x

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    1. Thanks Heather for taking the time to read it and also for popping over here regularly. Im loving this blogging lark xo

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  7. So sorry to hear what you went through, such a tough time and being misdiagnosed at first, too. I'm glad to hear you are getting better slowly, and hope you keep on getting better and better. Blogging is a wonderful thing, I'm glad you're enjoying it and your crochet too.
    Sending warm wishes.
    Helen x

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    1. Awh thanks Helen, that is very sweet of you. Yes, blogging certainly offers so much and I love the community and inspiration that comes with it. Thanks for taking the time to read it xo

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  8. Hi Hannapat. Thanks for your kind comment at my blog.

    I can't believe what you must have been through and I feel for you. While I've heard of ME I don't really know anything about it. I certainly didn't know how debilitating it can be. I'm so glad you are well on the road to a full recovery.

    Gillian x

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    1. Hi Gillian I am so pleased to hear that I gave you a better insight into this horrible condition and thanks for taking the time to read it!! Yes, I am so grateful for the improvements that I have had and I look forward to more to come xo

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  9. Thank you so much for commenting on my blog, because I've discovered you as a result. You are the first 'vintage' blogger I've found who also suffers from M.E. I was diagnosed 20 years ago at the age of 19. It truly is a wretched illness. I spent most of my 20's & the first decade of my marriage bedridden, using a wheelchair to leave the house. I am at a better level then I was then, from about 5% functioning to about 30% now. My life is still very limited, & I take many different medications daily. I am too unwell to work or study or to have kids. I see one of Australia's best specialists & thanks to him I have wonderful medical care. I have learned to be content & grateful for the things I can do as I know so many are worse off, but it's hard when every little thing comes at a cost. But I am so thankful that I can leave the house a few times a week, & drive short distances when I'm up to it. Often my Frock Friday posts are done & then I am back on my bed. I have never gone "public" on my blog, I have already had a troll after me for daring to say I am "chronically ill", so I try to keep things light on the blog. I sometimes wish I could be more open about it, but I don't need the criticism that often goes along with M.E. I'm sorry for such a long comment, it was just so lovely to read your story. I do hope your health continues to improve, & that there are many better days ahead for you. I look forward to following your journey.
    Leisa Xx

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    1. Oh WOW!!! Yes, well you are my first vintage blogger M.E lovely out there too!! So we might have to have a little got to know date celebration. Thanks for your comment and gosh, I certanly don't mind the length, that's what the space is there for, righ?! I think it is so hard to live with this condition and at the moment (due to spending too much time in front of the laptop) I have gone downhill again. I feel like I am back at the first stages, but then you will be all to familiar with the boom and bust cycle of this condition. I am sooo pleased to hear that you are in good hands in Oz and that your medication works, it all makes such a difference to work with someone who understands what you are going through. Like you I have also found an amazing therapist, but we have to pay and I have found some amazing supplements (info on this at the bottom of the post). I have no idea where I would have been without these. During my journey there were so many days where I wanted to blog about M.E and I started a blog on wordpress about a year ago, but did one post and to be honest, it just wasn't me. I would much rather blog about the things that make me happy and give me hope and life than the things that are a constant reminder that life is so different, not that I necessary feel bitter about the difference. I did however feel I couldnt have a blog and ignore that part of me completely as it is shaping the new me daily and that is a massive part of adjusting to this illness, accepting what we have and learning to live with it. I am very content to and although I would so love to go carbooting and go out for a walk, swim,etc... I have my wheelchair and at least it gives me some freedom away from the house. I think making and creating things is such a wonderful way to inject some love into our lives and without blabbering on anymore, my golly I am super pleased that we have stopped by today and I look forward to following your journey with you too. Big hugs and bestest warm wishes xoxo

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  10. Thank you for sharing this Hannapat! So sorry that you have had to go through this, but glad to hear you are doing better, and will be keeping you in my prayers for more healing!! Blessings, Heather

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    1. Thanks Heather for your kind words, I REALLY appreciate your prayers and thoughts. Thank you so much for reading this! Warm wishes xoxo

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  11. Thank you for sharing your story, Hannapat! I have been suffering from ME for the last eight years. My symptoms are much milder, than yours, but nothing makes me feel better at all -I had a nutritionists help and lots of vitamins and adrenal support supplements - nothing makes a difference. It is so encouraging to hear your story!

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    1. Hello Elena, thanks for your lovely comment. Keep dreaming big!!

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  12. Your post almost moved me to tears as it struck such a chord - I also have M.E and have had relapses over the last 20 years. I had a bad episode about 3 years ago and have had to give up working. Like you my blog and crochet has given me a focus and I am probably functioning between 30 - 50% most days.
    Keep strong x

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    1. Thank you lovely Sweetpea, it is so lovely to meet other likeminded people in a similar boat xo

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  13. I think you must have posted this shortly before I started reading your lovely blog.

    Me too! I was given the same diagnosis as you when I was 35, after a nasty run in with pneumonia, but luckily as I'd been so obviously ill I didn't have to contend with any of the 'it's all in your mind' nonsense. Unluckily that was 16 years ago and although my health did improve during the first few years it has never properly returned, and now I have RA as well. Such is life, what can't be cured ... and all that jazz!

    Hugs from one who knows x

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