Saturday, 11 May 2013

It's all about ME !!!

Hello..... So today post is going to be very different from my usual happy blogging, but rest assured my normal crafty ramblings will be back by my next post. Today however is going to be all about ME !! to be more precise Myalgic Encephalomyelitis. Today the12th May is ME awareness day around the world, and today  Niagara Falls will be illuminated blue to raise awareness. How cool is that, it seems a life time ago that I was actually there. What can I say about ME, well one things for sure, it's not all about 'just being tired all the time'. That's one thing that drives me crazy when healthy people say to me 'I'm always tired I think I might have ME', or 'I'm exhausted' as frankly they have no idea.

I was not sure about whether to write this post or not, to put this out there, as I think it's going to be very hard and confronting for me to write, but I think it very important to raise awareness of this condition that destroys so many lives. I'm not writing it to get sympathy as I know full well that there are many who are far sicker than me.

So here we go.....

I guess my great ME adventure/nightmare started like it does for many others with a flu like illness, that I just never recovered from, that was over twenty years ago now, when I was a healthy fourteen year old. Who had a very active and sporty life. Since then I have had many relapses and one seemly complete remission. I've been bounced around the NHS trying to find a treatment that might help. I managed to sit me exams and pass them, I manage to leave college and get a job. But bit by bit my life was slowly falling apart my health declining with every major relapse. That would lay me up in bed for months at a time.

While my peers were moving out, having long term relationships, children and careers my life was stuck in limbo, within four walls to ill and exhausted for any such things. It's at this point that my ME story  goes in a different direction to most.

I saw many Dr's and a lots of them were not entirely certain that I had ME, as I had some abnormal blood test results and in some ways my symptoms vary from classic ME or CFS, but then if you put twenty suffers in a room, there symptoms would all be different. I've seen many doctors over the years, some really good some not so.the two worst were (one who looked it up on google, and another who told me to live a stress free life with lot's of holidays' ) I kid you not.

Eventually I ended up at a NHS Homoeopathic hospital where I saw a consultant homoeopath, who finally knew what might be wrong with me.  So for the last six years, I've found myself caught between two diagnosis, ME (frying pan) Chronic Lyme Disease (Fire) which ever I have, my GP wavers between the two, NHS consultants 'don't do Lyme Disease' here in the UK.So I thought I would blog about how this illness affects my everyday life. Let alone my hopes and dreams for the future.

Everyday I take these prescribed medications, this illness has affected nearly every system in my body from my Thyroid to my muscular/skeleton to my digestive and immune systems. There are many more medications my doctor has prescribed over the years, that my body simply cannot handle as my compromised immune system has given me many allergies and intolerance's and bad drug reactions.

I think the worst of all the medications I take is the antibiotics  I have been taking them long term for the past six years. I'm allergic to so many, and the one I can tolerate that can treat Lyme disease makes me very allergic to the sun. So if I go out I have to wear a hat ,coat, scarfs and use my 'I'm a lady pararsol'. Vampire Clare that's me. At first my health improved a lot with the Antibiotics but since 2010 it has really declined again. If I stop the antibiotics I get really sick with fevers and a major symptom flare. So I'm stuck, I have to keep taking them. It's no fun not being able to go in sunlight, I'd love nothing more than to be able to sit in the sun, it should be a human right.

Every day I take all these supplements, if you shook me I would rattle. Do not fear I've taken advice from a nutritionist and read way to many books on the subject. I bet if you asked any ME  patient they would tell you that over the years they have tried all manner of supplements for this illness that has no treatment or cure currently available on the NHS. 

Every day I also take two medicine cups worth of herbal medicine, and if I have a infection or virus I also take the herb echinacea to. I've been seeing a herbalist for about nine months now, originally I went as last summer I had a trial of being off my antibiotics, it failed I got really sick. So since then I've been doing both. The herbs seems to be helping my energy levels a bit, but boy do they taste awful.

And these, well they are my as and when needed medications, the inhalers for asthma something I did not have pre ME but it's left me with and multiple chemical sensitivities, some pills for my balance that can just go at any time. Yes sometimes I'm a human weeble !!

So this is how I spend my days. The only recommend treatment for ME with the NHS is to follow a pacing program that balances your days with rest periods and activity in order to try and stabilise symptoms and energy levels. Same thing every day like ground hog day for the exhausted. Not really a adequate treatment for such a debilitaing illness. You establish a baseline energy level and try and maintain that every day depending on symptoms, you then gradually try and increase what you can do every two weeks if energy scores allow. That's the theory anyway.

Currently my level  of activity is at 1 hour and 20 minutes each day. It's been the same for over a year now !! If I'm having a good day I can manage to finish my pacing. If not i might be able to do part. On a bad day I'd be stuck in bed all day unable to pace. So that's 1 hour 20. For everything for the day eating, bathing, getting dress, crafting. So that's why in previous posts you've heard me say my crafting time is limited, as currently I'm allowed ten minutes a day for crafting.

So I rely a lot on my carer P, for cooking cleaning and helping with everyday tasks most people take for granted.  I spend so much time in my bed, so it's a good job it's comfy. I rest, I craft from my bed, I blog from my bed, I listen to music meditate, watch TV In fact the reason I started to write this blog was because I had developed a new and very annoying symptom. I suffer with brain fog as do most people with ME/Lyme's but towards the end of last year I noticed that I was having trouble with spelling. So being the determined soul I am, I decided I would fight back against this dyslexia type symptom by writing a blog, use it or lose it so to speak. Nobody can tell me why this has happened, I've even had a brain scan,  but nothing showed up to say why this might be happening. So that's why there are probably lots of little errors in my posts, I do try my best reading and re reading.

If I don't pace and over do things it can cause my ME to relapse and I could be stuck in bed for days, weeks, months recovering. I'm still paying the price for last weeks night out in the 1940's. This week I've had four full days in bed. I was supposed to be going out for my Birthday bluebell adventure tomorrow, to a wheelchair friendly wood but I'm not going to be well enough to go, so it been postponed again until next weekend, hopefully I'll be well enough to go then but I'm used to missing out on things by now.

Talking about wheelchairs this sporty little black number is mine, it was a replacement for my old chair last year. How do I know it's the sports model, well bizarrely enough it because it has a seat belt !! It's a attendant propelled chair as due to my condition I'm not allowed to wheel myself.  My mobility is very limited these days, on a good day I can make it down the garden and back with a rest half way about 40. metres. On a bad day no chance I'm in bed.

Like most people with ME and Lymes disease I've had to become my own expert on the condition, these are just some of the books and CD's I have. So what helps, Pacing, Resting, Meditation, eating a healthy whole food diet. Avoiding things you're intolerant too, me I can't have dairy or yeast in my diet which can be very tricky. Supplement and alternative medicine. Staying positive.Having a creative outlet. Not getting stressed, the current government changes to disability benefits dose not help with this (don't get me started) and most importantly not picking up additional virus and infection, if you know someone with ME please don't go near them if you have a virus, just a cold to you can be disastrous to someone with ME.

Most girls have a selection of shoes and handbags, me it's walking sticks and parasols.

Before I go, I just thought I would list some of the symptoms I have from day to day, to give you a idea of what it is to live with this condition. Extreme debilitating fatigue that is not relieved by rest, muscle and joint pain stiffness and swelling. Blurred vision, light sensitivity, swollen glands (that can be really bad I was once hospitalised with swollen abdominal glands) fevers, sweats, flu like symptoms, recurrent sore throats, gastritis, abdo pain, food allergies and intolerance's, inflammation, thyroiditis multiple chemical sensitivities, asthma, tachycardia, and heart palpitations, awful headaches, problems with balance, muscle tremors and twitches, pins and needles, nausea, memory problems, word recall, dyslexia, brain fog, hair loss, skin lesions, back pain just to list a few. Still think it's just about being really tired!!

What would my life would have been if I hadn't got ill, I truly don't know. I'm sure I would have been doing something creative, maybe with music. I definitely would have travelled the world. It's hard to say really as I've been ill for so long now I really can't remember what it's like to have a healthy body. I guess I'd just like to being living a normal everyday life, doesn't seem to much to ask does it?

If you've managed to make it this far through the post I want to thank you for sticking with me and reading, I know it's not been a bundle of laughs this post. I'm going to stop now but really I think I have only just scratched the surface, there is so much more to say. If you want to find out a bit more, then you can check out Action for ME website.

Thanks for reading

Clare x

They did it thought you might like to see Niagara Lit up all blue for ME awareness, isn't it beautiful? , it was also lit up purple for Fibromyalgia yesterday, as the conditions share many symptoms a awareness day and week. Many of my ME friend also have a diagnosis of Fibro. Thanks again for reading. xxxx


  1. I'm really glad you went ahead with this post Clare - you've done such a good job on it! I really hope you get to see the bluebells soon xxx

    1. My sister put me and the wheelchiar in the car today and drove down to W castle, where we saw a few bluebells in the stunning gardens. I only manage a hour and I'm completely wiped out by it, but it was good to see them. xx

  2. Totally with LindyLaine and glad you posted this.

    I have only heard of ME through the media and associate it with people being tired all the time, so your post has informed me of just what an awful condition it is. I heard about Lyme disease on Radio 2 a few months back when there was a discussion about it and how hard it is to diagnose.

    Starting your blog to combat brain fog was a great idea and I do find it very inspiring, as your crafty creations are always so beautiful.

    So thanks for the informative post and I really do hope they find a breakthrough for ME/Lyme sufferers in the not too distant future.

    1. Hi Sara

      Thanks for leaving such a lovely comment, I was very nervous about doing this post, so it nice to read such a supportive responce. I'm glad I've written it now though, if it helps raise awareness it can only be a good thing. xxx

  3. So much is familiar here :S Well done for managing to write it and braving putting it out there... brainfog, exhaustion and nerves always get the better of me but it's so important!!
    hugs xx

    1. Thanks Rachel, I was really nervous about sharing this post but like you say it's important. I've been amazed by home many views it's had. I hope todays a good day for you. xx

  4. Paula Reynolds22 July 2013 at 09:55

    Hi Clare - I was led to this post by a friend who has ME. I also have a cousin and aunt who have it. I didn't appreciate the range of symptoms and difficulties experienced - well done for writing, I'm sure it is informing for many and a great support for those who battle alongside you. Stay positive, healthy and crafty.

    1. Hi Paula, thanks for leaving such a lovely comment and for stopping by my Summerhouse. It lovely to think that writing this post has been a help to someone as the reason I wrote it was for ME awareness day. xxx