I wanted to write my story and tell people what ME is like, but how do you do that, just stating facts about how I got it and what the symptoms are just doesn't do it. How do you explain something that takes over your life and has a huge impact on you and those around you?
How do you explain that no matter; how much money you have, which government is in power (today is election day) what people think is wrong with you or anything else it will still be there, it will still impact on what you can do and the pleasure you are able to get out of things and their will be consequences for each thing you do.
I am just looking back at a story I wrote in 2003, stating the facts of how the illness started and developed, I was diagnosed in 1998, 17 years ago.
I will post the story on a separate page I think, I don't know, do people want to know?
In some ways the history isn't relevant, but in other ways it is. Well anyway it's here My ME History. The story ends rather abruptly 10 years ago, not because I got better, but because we began the route to having a child with IVF, another long story.
Many things have happened in the intervening years and these have all had an impact on my ME and my outlook on life. To mention everything would take all day and be really boring, but the biggest events were having IVF treatment and getting pregnant on my second attempt and during my pregnancy my husband being diagnosed with cancer and me being in hospital at the same time as I was paralysed for about 12 hours!
Further blows were dealt with being told we couldn't have more children even with IVF and other family health problems and bereavements, its been a crazy 10 years and, just as we get over one thing something else seems to come along so my ME is always quite bad as I can't sit back and watch others suffer and I want to be involved in my daughters life and upbringing and do what I can, but the constant struggle with pain, fatigue, dizziness and feeling really ill is soul destroying and gets me really down. Amazingly after treatment my husband recovered and was able to go back to full time work and help to look after me and my daughter, but it means we have little time for anything other than the daily routines, which exhaust me just thinking about them.
A typical day for me is get up have my breakfast, supervise Emily having breakfast and getting ready and taking her to school, by this time I am usually feeling very tired and ill, but have to do things like sorting washing out, paperwork, tidying up. After an early lunch I go to bed for about 3 hours, then collect Emily and then wait for Rob to come home to cook tea. dealing with Emily at the moment is very difficult, she is moody, strong willed and impatient and will make things as hard as she can for me, shouting me as soon as I go out of the room, telling me to go away if I am in the room, making demands for food and drink that she could get herself. She talks and throws herself around permanently and just being in the house with her is exhausting. Most evening Emily has an activity to go to so we are always rushing to get ready and rush tea and get her to where she needs to be next. life is never calm or slow. I have tried to cut back on what she does, but she needs some outlets for her energy and it is too much having her in the house all the time, but its also not down time for me and I get very stressed and feel like I run a marathon every day just keeping on top of what needs to be done. I feel like I work full time even though I only go out to do school run, Rob takes her to most other things, but its feels like constant coming and going and making sure everyone has what they need.
I get help in the house, this was set up by social services when I was in hospital with the paralysis and Rob was so ill, as basically they said I needed to be helped as Rob was my carer and not able to fill that role any more. Amazingly even though Rob is now recovered I still get that help, it has changed over the years as at first it was personal care, which meant I was bathed and dressed every day, but once Emily came along that was not really practical help and I needed more domestic type help. To enable this I had to change my care package and apply for a personal budget, which all took time and energy on top of a new baby and a sick husband. Eventually I got SDS payments and have to find and employ my own help within the budget specified by social services. At first the budget was very generous, but year on year things have been taken away and I am now down to bare bones which pays for my PA who mainly helps in the house, she is also my cleaner but that has to be paid by me as domestic help is not covered by care packages. I also employ someone to wash and dry my hair for me as I am not able to do it for myself. Whilst it is great to have nice looking hair it has its own issues as I have to have it done at specific times and it is another person coming into the house which all make me feel worse. I hate having the PA too, she mostly comes in when I am resting, but it unsettles me having someone in the house and I am aware of her doing things, sadly she is not the most discreet of people and I get quite distressed at times. The rules about who you can employ and what they can do keeps changing and I don't know how much longer I will be able to keep the payments and the help with all the current cuts. I have to fight every year to justify my need and hope they allow the care to carry on. each year they take a bit away and tell me that I am not really needy enough. The thing that swings it for me is that I need the help in order to be a Mum to Emily, but I don't know how much longer they will allow that reason (that is their phrase not mine).
I enjoy crafts and spending time on line, but they all take my energy too and I am finding concentrating on them increasingly hard, but I can't sit and do nothing. I get upset by things people say and do online, but yet during the daytime they are my only contact with the outside world.
If you follow my blog you will know that I am putting all my energies into ME awareness next week, by dressing as a Princess with Emily on Sunday 10th May, making crowns with Emily's class Tues 12th May and at Friday club Rothwell Baptist Church Fri 22nd May making crowns and sharing information. Thank you to everyone who has donated so far, there is still time at https://www.justgiving.com/Jane-Shaw5/… or text JEMS58 amount to 70070 to raise money and awareness for ME.
I need to finish here as I am too dizzy and tired to continue and I now have to pay the price of sitting here for an hour typing and trying to sort out my thoughts. I hope to continue this later, but if I don't it's because I am paying the price, not off enjoying myself.