Monday, 12 May 2008

ME Awareness Day....

..... is today, so I thought for a change, I'd do a post about what its like for me to raise awareness as I know there's loads of people who know about it, but maybe don't understand what it's like to live day to day with this illness. This post isn't designed to make anyone feel sorry for me, as I don't feel sorry for myself so why should anyone else?

I got sick in February 1999 with some virus that gave me chest pain, breathlessness, headaches and just feeling very unwell. At this point in time I was fitter than I'd been for ages as I'd been going to the gym twice a week and swimming on the weekend if I could fit it in. I carried on going to work as a radiographer/ultrasonographer as usual as they had a policy of interviewing you if you were off sick too often, but after 4 days I was having trouble standing so I nipped down to A&E to get checked out. After this I was off sick and every test I had came up as normal, but I was feeling worse. In May I tried to go back to work and managed 2 mornings before it was too much. My GP recognised what was going on and referredme to a specialist after 6 months and it was confirmed that I had ME. After I'd been sick for a year, work 'terminated my contract' - basically they sacked me as I'd been off sick a year.

For me, the main problems are the sheer exhaustion that is always present, plus muscle weakness and pains. Oh and I nearly forgot, the poor memory and basically being a complete 'nana and getting confused over the simplest things!! Classic example of poor memory happened today. I got out my cropped trousers from hiding and I had completely forgotten I had a couple of pairs, and that included may fave ones that I have put on today! That was a lovely surprise!!

I think the key to surviving this comes when you accept that you are ill and you won't be who you were or thought you would be, but you are the person you have become - if that makes sense. Once that happened I felt able to pace myself to get through each day and enjoy each moment you possibly can.


There is always something to struggle through, usually connected with the benefits system, so you live in fear of those brown envelopes on your doormat. For example, every 2 years you have to reapply for the benefits, which involves filling out a 20+ page form on your illness. Three years ago, I filled out the Incapacity Benefit form and then had to attend a medical. At this examination, the dr decided I was fit for work so my benefit was stopped immediately. I was devastated as I knew there was absolutely no way I could cope with working, so I started an appeal. When I got the report that the dr had made, I couldn't believe what he'd written. Basically he hadn't put down half of what I'd told him, he said that I could bend to pick up my bag (which obviously means I'm fine) and he couldn't even copy the drug names correctly off my repeat prescription form I'd given him. I could go on but I'm getting mad again!!!!! At the appeal about 6 months later, I was immediately awarded the benefit, but sadly I'd already suffered a relapse.


There will always be people who don't believe in this illness and will think we are just lazy, but to these people I will say, I don't want to feel like this, and this illness has cost me my chance of having children, and that was the hardest thing to accept. I am lucky though, as I have my nieces who are great, and now that Helen has had Sophia, I'm enjoying the baby times again when I see her. But every time I see the children, I know that I would not be able to cope with having a family full time, so that makes it easier.


If I hadn't got sick, I'd never have discovered crafting. After I split from my ex and returned to my parents 6 years ago, I thought I'd have a bash at card making as I suddenly didn't have housework to cope with, and it all kinda snowballed from there!!


In 2004, I finally found the perfect flat for me. It's 2 bedrooms (I needed one for my stash!), ground floor and with sole use of a small but completely paved garden so no grass to cut. Mum and dad cleaned and decorated it for me and I moved in that Christmas.


I don't know how anybody coped with this illness before the internet was around! I get most of my shopping via the net as I struggle to get out to the shops. It takes a day or two of not doing too much beforehand so that I have the maximum energy to go out. If people who know you see you out, the natural reaction is to think you must be getting better, especially if you have a chat. Sadly however, for me, Iuse all my energy shopping or chatting and people don't see you when you get in and have to lie down straight away as you are shattered. Or that it takes 2 or 3 days to recover from the trip out. This is the main reason for me doing such a long post as I'd like everyone to know perhaps just a little more.


I'm very lucky as I have a naturally positive character - which I only discovered on getting ill - and I don't suffer from the depression that is frequently part of ME. The friends I have made over the net with ME are also people that I have a great laugh with - that's you Tony, Janette, Vikki and Jan - as you don't bother with anyone who brings you down. And the friends I've made on the forum and through blogging are great, there are soo many complete loons out there that brighten my day.


I'm still the same person inside as I was, it's just my body doesn't work too well!! I still have a very childish and sick sense of humour, I laugh every day and am so grateful that I have the family I have as they are all so loving an understanding. There are a lot of families out there who don't believe someone in their own family is ill.


I tell you what though, I'm bloody falling asleep writing this out so I'm not sure if anyone's made it to the end with me!!!! If you are, bloody saddo, go get a life lolol.


Normal blogging service will be resumed shortly, thank you and goodnight!!


Here is the latest WIP. Look how well he matches the orchid Lynne sent me!!

20 comments:

Penny said...

I couldn't have put it any better Kaz. I am of the same thinking as you 'it's what I have , not who I am' Kudos to you for posting this!


Penny x

Angelnorth said...

Thanks for posting Kaz - I hope someone with a very big brain figures out very soon what exactly is going on with ME because maybe then they can figure out how to do something about it, even if that's only to take the edge off the exhaustion.

Cute wip!

Kitty said...

I've posted before about the very bad illness I had in my 20s. What I haven't ever said before was that it was ME from which I was suffering. At one stage I couldn't even walk. I tried acupuncture, hypnotherapy, nutritional therapy, cognitive therapy, reflexology, cranio-osteopathy: in fact I tried a bit of lots of things.

I am much, much better now, than I was then. But people still don't understand: don't understand that one can never just 'do' a day without thinking about the after-effects. Or that for ever effort there has to be a rest. It's utter pants.

You look after yourself x

Janice said...

Thought one of the 'loons' from the forum had better post something lol! Fab post Kaz, you manage brilliantly and your attitude is just fantastic - you give back so much to your friends and family, probably more than you would have been able to if you were working. hugs for you, thanks for sharing your experience.

Traceyr said...

As my 'sister' has said already Kaz you are one of the most positive, friendliest people I know on the forum and an inspiration both craftwise and in life.

Big hug and kisses being sent to you today.

Love Traceyr x

Igotmebabe said...

Well done you for that post. I am definately the person I have become, I think :) It can be fun being a Loon. Just think of all those conversations we would never have had if we had not met all those years ago in the foggy place,and it doesn't matter that we don't remember them, because we can have them all over again, by the way who are you ?
Love you Loads
Bug Hugs

Karen said...

Well written darling. I am so glad that I am 'in recovery' but am still aware that I have to pace myself everyday and still plan ahead. Staying positive is so important isn't it. Love & hugs to you X

Jane said...

Hi Kaz, thank you for your explanation of ME i knew about some of the symptoms but i guess i hadn't realised the full impact it has on your life. Your skill with cardmaking and crafting is wonderful. I love your groovy looking monkey. Jane x

Anonymous said...

U said RING !!!!

Lesley said...

Kaz - this is a great post! I could feel myself welling up as I read it.....don't get the wrong idea and think I'm feeling sorry for you....as if!!!!!

I think you are wonderful at everything you do.

You are very funny....and such an accomplished (and prolific)knitter of fluffy primates, which in itself will earn you my undying admiration :)

Hugs to you xxxxxxxxx

Anonymous said...

An interesting informative blog post. thank you and really hope you t well soon as the recovery rate is said to be good once on the right pathway of pacing and CBT etc. Hope you can then get back to enjoying the more active side of life and have loads more of the same kinda fun you have now plus whatever the future (plus the ring) have in store for you. Can I ask why it affected your fertility ? Perhaps that is too personal to share but I find it sad that a condition like ME could do that to somebody. I didn't know it caused organ damage so I have learnt something new today! They say you are never to old to learn and I am "old" and so that is now so true!

Kaz said...

Hi Anonymous, it hasn't affected my fertility at all, it's just that I got sick aged 32 and now am 41, and while that isn't too old these days, I feel it is for me. Plus if you take into account the fact that I'm single, and would need the support of the father to raise children! I don't think the turkey baster would be very good at the midnight feed!!!

I don't mind you asking at all as I'm always willing to help anyone understand this illness.

As for ME causing organ damage, I think that's in the hands of the researchers at the moment. However, last year, for the first time, ME was allowed to be given as a cause of death, due to renal failure if I remember rightly, so it may well be. Thankfully that is rare.

Thanks for taking the time to comment x

Kathy said...

Kaz, thank you for posting this. You hear a lot about ME but not so often from the people who really matter.
Making people aware of the effect this awful illness has on peoples' real lives is so important.

Rosie (Freycob) said...

Kaz, well done you for such a fab post hun!

You are one of the fabbiest peeps I know! Love your sense of humour although it's far too dirty for my innocent mind! LMFAO

Luvs ya!

But as for the turkey baster comment..... yeuch!

Caroline said...

I know what ME is like Kaz, as my best friend suffers from it too and has done for the past 5 years or more. I went with her to several hospital and doctor appointments, loads of tests and it was over a year before they diagnosed. She has good and bad days, and is pacing her life to suit.

You are an inspiration hun, you really are. So good natured and good-humoured, a lovely person indeed...

Keep on keeping on.....xx

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