Sunday, 28 November 2010

Writing about M.E

The terrible puns continue- please indulge me for now...

In my four-ish years of blogging I have written about shoes, poetry, planting a vegetable garden, eczema, bees, sleep, being a single parent and all manner of other subjects, and why not? My life has always been reflected in my writing so my interests and experiences collide to a greater of lesser extent.

Writing has been my major focus, apart from Sam, since starting at university. I have always written and used this as a way of sorting through feelings, thoughts and dilemmas. So I shall carry this on and write about what is happening in my life now and what will happen following my diagnosis.

I managed to get in the car with Sam on Friday and drive down to Bristol to stay with friends, as had been planned for ages. It was either that and stay at home on my own with Sam again for another weekend, and we both needed a break, some fun, and I need some support at the moment.

And we have got what we needed this weekend. My old friends from Bristol, where I lived years ago, have been wonderful. Taking Sam out to see the SS Great Britain yesterday which he LOVED, and today to help friends pick out a dog and then to a pub for a lunch.

This has given me a chance to rest, think and just 'be' and have some space.

I am up and down, one minute emotional and full of fear and blaming myself. The next minute thinking positively and pragmatically.

I expect this seesaw-ing of feelings and moods to continue for a little while and, as I am only human, I am going to let those feelings out as they come, and then let them go and get back to looking forward.

There are lifestyle changes to be made and priorities to be considered.

This is an opportunity to make positive changes. As my good friend Kat says," You are the captain of your ship" and I think I know whiich way I am going to steer it.

But for now I am in dry dock, getting repairs, and looking at maps.

Love, Love, Love

Thursday, 25 November 2010

All about M.E

I have just been diagnosed with post viral fatigue syndrome, also known as chronic fatigue syndrome or myalgic encephalomyelitis or M.E.

I am in shock really and trying to do everything possible to put stuff in place to give myself a break and take the pressure off. I haven't been well since September and the diagnosis and signing off from the doc yesterday was a relief as well as a shock.

So, how as a single parent without much of a support network (although where it exists it is wonderful and so appreciated) and half-way through my final year of my degree I have to ask myself- how do I get through this?

Day by day and one step at a time. Sam is my priority and there is no doubt that me being poorly over the last couple of months has affected him. I need to stay well to make sure he is ok.

This is just some thoughts really- not a well thought out blog post. I hope that with rest and some more lifestyle changes and a good look at my priorities I will be able to get better and stay better. The last few years have been some of my healthiest so this is a quite a blow.

I want to be able to take Sam swimming again and have enough energy to go out on my bike and dig my veg patch. Can't do any of these just at the moment.

Love, Love , Love xxx

Thursday, 18 November 2010

Kitchen, Kip and Kids

Day four in the house without a kitchen. Day four of a total of three weeks and there are four plasterers getting to work for a second day on the concrete box that was our kitchen. It will be worth it but at the moment we are living higgledy-piggledy out of a chaotic dining room and feasting on a range of microwaveable food. It’s an adventure...

Respite from this came when I stayed at my best friend’s house the other night. We went out for dinner and to see a film for her birthday- meat platter at Bodeans followed by The Social Network and half a bag of jelly babies...and then a taxi back to hers and a hot water bottle encased in a fluffy pig cover, a dark room, silence and sleep...blessed, uninterrupted sleep for nearly seven hours.

The sleep deprivation for me continues apace. Not every night but most I am woken up by a small person requiring a nappy change or reassurance that the monsters in his room won’t get him. This is all fine in theory but I seem to be lurching from one bout of exhaustion and fluey illness to the next. Add in the workload of the final year of my degree, visiting prospective schools for Sam for next year, and now no kitchen and I am really struggling.

The bus journey home from my friend’s house yesterday morning was full of kids on their way to school. Normally I have my head firmly in a book or newspaper, and this was no different yesterday, but then I could hear the sound of ‘Automatic’ by the Pointer Sisters drifting up towards the end of the bus where I sat. Looking down the bus, trying to work out where it was coming from, I spied two boys aged about 12, sharing a set of headphones and actually singing along to this eighties classic...Aw! ...quite innocently enjoying a good tune, no gangsta rap in sight. The kids (of today) are alright.

I try and go out once every few weeks for a grown up night out, by myself to a gig or poetry reading, or for dinner and a film with friends. Although I have too much studying and not enough hours in the day to get it all done, on top of chronic sleep deprivation and the normal extra stuff that comes with being a single parent, a night out is pretty important. Add in a good night’s sleep and it really is better than going clubbing used to be...oh yes, categorically, no contest.

The fluffy pig left a deep impression on me- not literally- that would have to be the other way round-and I found myself in Boots yesterday afternoon buying a fluffy hot water bottle cover. I am converted...a fluffy warm lump at the end of the bed to warm my toes on as I go to sleep is blissful. I wish it could be a cat but allergy prevents this- at least I am guaranteed it won’t suddenly decide to go elsewhere.