Sunday, 18 September 2011

Advice needed.

I started blogging way back in March for something to occupy my mind and hopefully keep it active. I have been off work now for 2 years having gone through a series of consultations and eventually being diagnosed with M.E.

I miss my job though. I worked hard to become qualified as a Driving Instructor and built up my own business that fitted perfectly into the school times as a second income. I had a great pass rate with my students and I felt as though I really had found a job, not only that I enjoyed but something I was good at.

I fully expected to get back to work after treatment and really thought that this illness would not last this long. However there were many delays along the course of my diagnosis ending up with my NHS Borough refusing to pay for the treatment that is available at Kings College Hospital in London. Don't get me wrong I know there is no miracle cure but the 12 week programme at the research centre helps to keep it under control and enables you to get back on your feet quicker after any relapses.

So after being told that the treatment was not going to be paid for my GP ( who has been excellent along the way) advised me there wasn't much she could do about the decision and that I had to do the best I can to manage the M.E myself. So apart from the painkillers I get on prescription for the muscular pain I am pretty much left to get on with it.

Don't get me wrong it has been difficult to get my head around it. In fact you almost have to grieve for your old life in order to accept and get on with your new life. This for me is easier said than done!!!! Some days ( like today) it just gets right on my nerves and I feel like punching someones lights out!!! I hate the fact my body hurts all the time.......and I mean ALL THE TIME!!!!! I hate the fact that I am exhausted all the time........and I mean TOTALLY EXHAUSTED ALL THE TIME!!!

You get where I'm coming from. Think of a time you have been knocked off your feet by the Flu. That literally is how I feel ( without the head cold) all the time. It gets right on my bloody nerves!!

Anyway, I started my blog back in March and it really has given me something to concentrate on. Something that's mine and somewhere to go to be someone other than mum and wife!!! That independence I lost when I had to give up work.

But I was thinking the other day about blogging about my M.E experiences. Not necessarily on this blog but maybe if I was to start another blog just for the M.E related stuff. A diary of my experiences up to now. Articles that relate to the condition. Maybe tips or lists of things that could help other sufferers on a daily basis or to get through busy times.

The main problem with M.E is that it is invisible. People look at you and because you look fine they think there is nothing wrong with you, or take the approach ( whether they mean it or not) that you are a malingerer!!!!! There is no tell tale visible signs, for example. no plaster casts, no scars, no wheelchair etc.

So advice is needed. I would love to raise more awareness for this condition, I personally have no support group as my nearest one is in  Maidstone and I live on the London/Greenwich border!!! So I have no one that I can talk to about my condition. Family try to understand but I never really let them know how bad it can get. I always just go 'I'm fine' as otherwise it would feel that I am moaning all the time.

So I wondered would it be a good idea for me to start a new blog not only to help myself but hopefully help others too in  the process. It not only affects the person with the condition but also the families too. My OH is fantastic. He works shift work and thinks nothing of coming in and taking over at home ( with the exception of cooking!!) however tired he is. My 2 boys also cope well and are very helpful too. They will come shopping with me to steer the trolley and lift the shopping into the car. They are also helpful in the house. My bedroom is 2 storeys up so they are my fetchers and carriers!!! They also take on responsibility when my OH isn't there at the weekends and get me up with a coffee in the morning or in the afternoon if I have had to go for a lay down again.These are the the things I am not proud of but have become the norm in my house.

So I would like to keep the M.E stuff separate from this blog so that people don't start seeing me in a different light or feeling sorry for me. That way I can continue this blog as normal but hopefully raise awareness of the condition and help others on the new blog.

So what do you think? Is it a good idea or would I be biting off  more than I can chew (so to speak).

All advice welcome  and would definitely be appreciated.


  1. It's difficult to decide whether to split it into two blogs. You have to consider if you want to update two separate blogs, and how you would be using it. If you're planning to tweet it from your twitter account, it might be as well to have a category hierarchy that has its own corner on your blog. If you're wanting to start a support network, with the one topic only, then a separate blog might be the way to go. The ME is part of you, it's your life, and on your own blog, you can talk about your life and how it affects you without people thinking you are feeling sorry for yourself if you know what I mean. Ok, have gone on too long now. x

  2. That would be a hard decision to make... splitting into two blogs. But I can understand why you would want to!
    I suffer with a prolapsed disc and rarely mention it in my blog.
    It's not something you can see and people judge me on it. I'm called a faker and a cop out when I can't attend people's parties and things.

    I think having a blog specifically for the ME would be a great outlet for you whilst at the same time maintaining this one.

    Hugs hun xxxxxxxxxxx

  3. Scottish-thanks thats my dilemma but swaying towards a seperate blog. Will think it over for a while :)

    Ali- Thank you. I know how you feel when it's not visible people find it easy to be judgemental when it's not happening to them. Chin up and hugs :) x

  4. Yes, I agree with Scottish. I think it's a fantastic idea. it's very therapeutic you know. I see lots of similarities between your condition and a child's Autism diagnosis... you have to grieve the loss of the child you thought you had in order to embrace the one you actually have, for example.

    My blog is about our journey with Autism and mostly now I share stuff in order to help others now that things are so much easier for us. But I also blog about other stuff in our lives! No-one feels sorry for me. I like that I can follow a serious special needs post with a mad funny one! Then again my blog is s true reflection of my hyper, rambling head!!

    It would be hard to maintain 2 blogs. What about doing a weekly ME post? I once did a series of posts on our journey th Mainstream school over a period of time. In between other stuff. ME IS part of your like...maybe it should be part of ypour blog?

    You could also start up your own support group;-)Your first campaign could be to fight the stupid NS decision!

    Good luck whatever you decide!

    xx jazzy

  5. Jazzy- thanks I was also thinking of adding a new page just for that, with updates etc that would initially be published on my blog as normal then catalogued under that page. That may be better for me rather than a completely new blog! Just didn't want to change the blog I have now to something different but really your right, it's part of me so maybe could be part of the blog.

    Thanks hun :)


Please leave a comment. They make me smile!