Monday, 12 May 2014

M.E. Awareness Day - my story

I have occasionally been asked about what happened when I got M.E. so for this year's awareness day I thought I'd write it down. I shall try to be brief!!

It was 1999, I was 32, living with my partner, hoping to marry and have children and working full time as a radiographer. I'd done extra training and was qualified as a sonographer as well. Plus I was in charge of the day to day running of the mammography unit. I was going to the gym twice a week and going swimming on the weekend if I could fit it in.

I got a weird virus that gave me headaches, chest pain and shortness of breath and a general feeling of being unwell, but I carried on going to work anyway. As you do. 4 days in I felt so awful and could hardly stand so I took myself to the A&E dept to get checked over. All seemed fine so I went home and went to my GP. Over the next few weeks I felt worse and kept getting sick notes. I tried to go back to work a couple of months later, but couldn't cope. I was struggling to walk with the pain and exhaustion and had taken to crawling upstairs because it was easier and safer. I refused to stay in bed though, and tried to keep going with housework etc. I often wonder if I would have recovered by now if I'd actually rested more than I did.

My GP at the time was brilliant, recognised what was going on and referred me to a specialist who diagnosed me with post viral fatigue syndrome, which was later changed to M.E. He put me on a combination of antidepressants, not because I was depressed, but for the way they help the brain chemistry. One helps me sleep (it's common to get insomnia even with the exhaustion) and helps with the pain and another helps with my general well-being. I tried a few combinations until we found what worked. He also taught me how to pace myself and this has been the thing that has helped me cope the most. You do something for a short period of time (about 10 minutes)  and then you refrain from doing it for another hour and/or rest. This is to rest the part of the brain/body that you have just used.

After a year of being sick, my work contract was 'terminated' which is supposed to sound better than getting the sack from being ill. It broke my heart at the time, but actually it took the pressure away from always trying to feel well enough to go back to work, which just wasn't happening.

My relationship ended, and I moved back to my parents. It was important for me to become independant again and live somewhere without stairs and I eventually found a lovely ground floor flat when we'd sorted out my share of our house. My parents helped me to get it ready for me to live in and I love it here.

While I was at my parents, I fancied a go at card making. I wanted to do something creative, even though I had never been a creative person, plus I was finding it harder and harder to get out to the shops to buy birthday cards. Everything snowballed from there. I found that making something really helped to cope with the boredom and frustration. Contrary to what many people think, it's not fun being at home all the time because you are unwell and the amount of rest you need to cope is mind-numbing. It also gave me a whole new social life on the internet, with people I would never have met. Social contact is rare these days. Most of my friends locally have families and are so busy, but having visits from people is also so exhausting so sometimes it's not so bad that I don't see people often. With my internet friends, I can contact them when I'm up to it. My online friends only know me as being ill, so they don't expect me to be any different and know my limitations. I am dreadful at explaining to people I knew when I was well how I feel as I don't want them to think I'm moaning!!

The internet is the saviour for people with M.E. As well as the social benefits I do all my shopping online and the Tesco delivery gets put into my kitchen for me to put away gradually. 

When you have a change in symptoms, you go to the GP, but they can't do anything for you. It seems it's put down to the M.E. I don't have a regular GP these days as the good one left the practise and I'm working my way through the others to find a good one. I tend not to bother with GP visits as it is exhausting and quite frankly a waste of time and energy as there is no cure still. Most of them don't even bother to check even my blood pressure when I see them! I haven't seen the specialist for many years so I am just in limbo with no health support. You feel abandoned. And there isn't even a glimmer of light at the end of the tunnel. No other illness is treated this way.

Over the years I have had problems with the DWP and getting the right benefits. I have had to appeal when I was told I was fit to work!! The stress of this made me a lot worse and I still haven't recovered to the level of health I was at prior to this. I had someone report me for running a business from this blog!!!!!! I think I know who this was and I'm not the first person to suffer at their hand. Last year I had to apply to transfer from Incapacity Benefit to the new Employment Support Allowance. Just before Christmas I got a letter saying I was in the Support Group, which is where you are put if you are too ill to work. I got back from my sister's after Christmas to an answer-phone message telling me I was in the work related group, which is where you are put if they think you should be going back to work soon!!. I called them and was told I was in the work group and the support group letter was a mistake and that 'mistakes happen'. How cruel is that? Anyway it got sorted and I'm in the right group now, but again the stress of this has made me even worse! This year has been a struggle.

So you may wonder how I make things and blog them and am making videos if I can't work. The answer is simple, I do it in stages. I pace myself through things and only do it when I'm up to it. There are long rests in between. My commitment to the Stampotique Design Team is to make one project a week and, as Di is a close friend of mine, I have no pressure on the Tando Design Team. I do not get any money for being on the teams, but I do get products to make things from. Making things is my therapy. It distracts from the horrible illness. It can make things worse though. My hands and wrists are often more sore because I've been cutting etc. I feel dizzy if I sit up for too long and the whole process is exhausting. But without this, I'd struggle to cope with the everyday life of a person with M.E.

15 years on from the onset I am still hopeful that I'll recover, although that is sometimes hard to imagine when my health seems to worsen rather than improve. I feel ill, sore and exhausted every minute of every day. The exhaustion is not comparable to anything I felt when I was working, it is much worse. I got over the fact I'd never be a mother eventually. I'm lucky that I am so very close to my sister and her family. I love going to stay with them even if it's exhausting!! I treat my nieces like I would have treated my own kids and Lynne and Andy have never minded that! My nieces call me their second mum which I adore. I even think their dog is mine! My youngest niece was born 3 weeks after I became ill, so I have a measure of just how much life I am missing out on. My family have always been supportive and I'm lucky with that.  I just have to call and my parents are on my doorstep. If I am feeling fed up and frustrated about my life, I call my sister and she helps me to put things into perspective, then gathers me up and takes me to her house for some niece therapy! So despite having terrible health, I do have a lot to be thankful for.

Kaz xxx


Hazel said...

Thank you, Kaz, for sharing in such a way that tells us what it's like. You are a very brave and courageous lady and very creative too. I'm so glad that you found crafting as a support through this horrible illness. As you know, I have Klippel-feil syndrome and have a lot of pain and restriction of movement and had to give up work when I was 55. I've also been so thankful that I found crafting as a way of helping me cope through the difficulties. Like you, I have to pace myself. It is so lovely that you have such a supportive family. I'm really pleased to have your friendship - you are a very special lady. xx said...

Sending you hugs lovely. I hope life gets better for you xxx

massofhair said...

With you every step of the way... I have a similar life, it is difficult for friends who remember the so full of energy person to accept who i am now.

You have described your life so eloquently and clearly it has moved me a lot.

I rarely tell anyone what my life is like as they don't understand or don't believe how tired or how much pain i am in.

I have Fibromyalgia, have kidney failure ( had a transplant in 2008), Small Fibre Peripheral Neuropathy and IBS. Get worse each year!

Crafting is my THERAPY when i can't sleep and i have turned to digital crafting when i struggle with my hands etc. Concentrating is difficult but like you i have learnt to pace myself.

Have put a twibbon on my Twitter page 2day to raise awareness. I hope you don't mind me sharing with you.

Thank you again for such a fabulous post:-) xxx

Clare said...

Thanks for sharing this, so important to raise awareness of this cruel illness, sending huge hugs and wishing you better health, don't know where we'd be without crafting
Clare xx

paddy said...

Very, very well written blog. It is really good to see it all written down so clearly, and to know how it affects you so much. We are all with you in hoping for some sort of break-through and the sooner the better. Can't tell you how brill it was seeing you this weekend and spending time with you! Love you very much!! Paddy aka your 2nd mum!!! xxxxx

Anonymous said...

Kaz, I was very moved by what you have written even though I did know a little bit about you already. A very close friend of mine suffers with ME so I am aware of what it is like.
You have a fab sense of humour and put together with crafting I am glad it helps to get you through the days!
Hoping each day gets better for you...
Thinking of you and lots of love, Caroline x

Kathi said...

Thanks for taking the time to write this.

I knew you were ill, but didn't know anything about M.E.

I'm so glad that you discovered crafting and the the crafting world on the 'net.

I admire your spirit and love your artwork.


Lythan said...

thanks for sharing this insight into ME Kaz. I appreciate your spirit and hope that one day you will be back to full strenght. I won't say what I think about the beaurocracy that makes you feel worse than ever....

Astrid Stulemeijer (AssiCrafts) said...

Sweet Kaz, I knew you had ME but didn't know your story. What a struggle it has been and still is. You're a brave woman Kaz and I hope you always will find the energy to be creative. XOXO

Corrie Herriman said...

Thanks for sharing your story Kaz ! I had heard of ME but didn't realise how cruel a disease it actually is. I hope that someday we will find a cure. Until then I hope we (your virtual friends) can support you in your struggle.
Try to keep creating because you are a very talented lady and we couldn't do without your wonderful art !!!
Corrie x

Dawn said...

What a touching and thought-provoking post sweetie. A real insight into the struggles of ME and like conditions, soooooooo proud of you for sharing my lovely, I can't imagine it was easy to write!!!!! Always here for you, mahoosive huggles and oodles of love darling x x x x x x x x

Karen said...

As someone who has the supposed 'milder' Chronic Fatigue Syndrome I can imagine a little of what you go through every day. It must have been incredible difficult to write this and you have made me so proud that I am a close friend.

For anyone who reads this I cannot stress enough that Kaz is a remarkable woman who has so much optimism in the face of her M.E.. I feel very very lucky that I have you in my life my darling. BIG HUGS xxxxxxxxx

Moira said...

Kaz as you know I have Lupus and reading what you experience each day sounds very familiar except I have a really good consultant and good health support. It is always difficult trying to explain our "invisible" illnesses to people in fact I get pink cheeks when I am really sick and people tell me how well I look! You are so right that support, in the real and internet worlds is what gets us through. Don't know which particular troll you refer to who reported you but what goes around comes around and I'm sure they will get their just rewards. Anyway my salute to you for writing this honest and open post and thank you for brightening our lives with your art

Carol Plume said...

Kaz - you are a lovely lady, brave and creative. I can only imagine what you go thro' each day and what a mammoth task doing things, that I take for granted, is for you. Thank you for sharing your story and fingers crossed that one day, very soon, a cure will be found. I feel very privileged to call you my friend xx

Kath said...

Thank you for sharing your experience. It is such a cruel illness and I sincerely hope progress is made in finding a cure very soon.

You are very brave.

Cocofolies said...

Hi Kaz, So sorry to write you only now, but I'm far from home for my work and it's very difficult for me this week again to leave some comments to my friends... Just wanted to tell you that I read your story in the train the day of my departure, this is so sad my poor Kaz, I was far from thinking that your life had been so badly impacted by this terrible illness due to a virus! I was very sad for you all the day after that.. I really hope medecine will find a remede to allow you to recover one day. I have myself a very bad experience with medecine and neglected diseases. It's so painful, far beyond words and unbearable.... Thank you to be so courageous to describe all your feelings and the hardships you have suffered these 15 years, t needed a fabulous courage especially in your situation. What could I say more?... Just that I'm a big fan of your artistic creation, you know it already, I find your makes and cards really amazing. We have a common point Kaz, without suffering so much (for different reasons) we would probably never have discovered this hidden part of us able to create beautiful pieces of art as a way to escape to despair.
Well, my message is so long, excuse me!! You don't need to reply, just wanted to write you for once more than one sentence, and assure you of my wholehearted friendship. (hope my English is not too bad tonight for you...:D) Hugs Coco xxxx

Angelnorth said...

I'd missed this post - thanks for linking back to it today. Learning to pace yourself is so, so difficult but crucial - I have a little of the same issue but can only start to imagine how hard it is for you. So glad that you found something to help you keep sane, focused and feel just a bit better through crafting - you produce wonderful things and knowing that they help you too is great. Take care and keep hoping both for a personal improvement and for a breakthrough with ME for all, we'll all keep hoping with you.

Gerrina said...

Thanks for writing this and let me understand a little bit more about life with ME.
It is one thing to here about it from a colleuque whose wife has it, but reading it from you who has to coupe with it makes it a lot clearer.
I just hope that you keep on finding enough positivity in your live to hold on and do evereything step by step! And maybe someone can find something that makes it stop progressing or even better in the nearer future...
I keep on enjoying your artwork (even more now I know how much time it takes for you to make it).
Sending you some positive energy, Gerrina

Mel said...

What a brave post. I am a recovering me sufferer and I am fully aware of your struggles. Well done for explaining it so eloqently. I have just found your blog and am blown away by you artwork. A high price to pay finding that you are so talented at the expense of suffering me for 15 years.
I am in great need of inspiration after having some really low times recently, but your blog has given me a real lift and inspired me completely.
I am utterly greatful to you and I shall be thinking of you in many days to come as a brother in arms against ME.
love mel xxx (I might even start blogging again.... well maybe ! )