M.E

Organised chaos or festive meltdown?

- TracyB Leave a comment

I have to appologise big time for complete neglect of my blog over the last few weeks.Also for the very late reviews of a few products that should have been done a long time ago.

I HAVE COME TO REALISE THAT M.E AND PANTO SHOWS DO NOT MIX!!

Virtually everyday since the end of November my youngest has been rehearsing or performing in Panto ( Chatham Peter Pan- with Vanilla Ice! if your close enough to go!!!). However, it truly has taken a toll on my health. I thought I had my M.E under control to a certain extent. With that I mean I know what I can be capable of from day to day and how much rest I will need in order to get through the day. But this has knocked me off my feet……..literally.

I am now at the stage where I spend most of the day in bed in order to cope with the drive to Chatham and chaperone duties before driving home and going back to bed. I haven’t eaten a proper meal in over a week ( great diet before Christmas LOL) not because I don’t want to but because of the constant nausea I have. I seem to be living off plain biscuits and the odd slice of toast- not great when I have to try and take Tramadol to counteract the muscle pain in my ankles and neck!

I am completely behind on Christmas and have to fit in a food shop at some point for my fresh veg etc. My house looks as though I have refugees living in it and my washing pile is taking over my little study room!

I have spent my day off today in bed until 1pm and then went shopping with my OH as I realised I had no stocking presents for the boys and had some presents still outstanding! I have managed to eat out tonight- my first main meal all week.

I have not even logged online to update or read my usual blogs I like to keep up with. I have Christmas products still waiting to be reviewed. I am back to the panto tomorrow with the next day off at Christmas day.

One thing that has become very clear is confirmation that I would struggle to go back to my job! I have often thought that maybe I could manage a few days a week or a few hours each day. But I have realised that I am able to do the things I do normally because I do not work! If I was to go back then my quality of life would go dramatically downhill. We have had no family time since this panto has started as I am in bed recovering either before or after. I am missing time with the boys and with my OH who also works shifts ( so sometimes is not there when we are!)

So without being a bah humbug I truly cannot wait until the last panto show is over on the 31st December.

In the meantime I will try to get organised, try to enjoy Christmas, and try to at least eat my Christmas dinner!!

Panto is a great opportunity for my youngest who loves his acting, and I would hate to stop him doing something like that due to me. But next year I really will think twice before committing to it!!

 

HOPE YOUR CHRISTMAS PLANNING IS GOING WELL

IF I DON’T MANAGE TO GET BACK ON HERE…………HAVE A FAB CHRISTMAS AND NEW YEAR!!!!!

Advice needed.

- TracyB 5 Comments

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.