Monday, 13 February 2012

My Valentine

Valentine's Day... roses, chocolates, dressing elegantly (highheels and all), out for dinner, a 'special' evening together... all those things kind of change when you have a chronic illness. Sensitivities to smells and food intolerances mean the roses and chocolates are out the window. Muscle pain and a body scrunched up and unable to walk for neurological reasons kind of anihilate the elegance and high heels. A romantic meal would have to be booked for 5pm (if I was lucky to be well enough) and sex - well if it is ever possible takes days/weeks to recover from. Many of us with this illness can't even stand to be touched because our bodies are so sensitive.
Somehow I still have someone who is willing to live with me and this uninvited third party. And I thank my lucky stars. Someone who believes, cares, helps. Is not ashamed of pushing me around in a wheelchair and is accepting of the new me and the changes that have come with it. Someone who has had to take on all those responsibilities that I use to hold. Someone willing (when needed) to shower me, help me from the toilet, cut my food into little pieces, cook, clean, dress me, take me to appointments.
How must it feel for these partners to watch the person they fell in love with be replaced gradually by this other body? I know there are moments when we both see this stranger in the mirror and have a sudden moment of terror.
Years ago I envied the romantic presents my younger sisters received from their suitors but I soon realised that a partner who was consistent and reliable in day to day life was far more important and a far greater gift. These people who live alongside us and this illness are truly special. So many take fright or don't have the selflessness/patience to handle such a situation. I know that this support makes a huge difference to what I am going through and my chances of improvement.
I know I have one very special guy - one very special valentine.x

Saturday, 11 February 2012

The Ripple Effect

In November last year I had an interview for an art course and was offered a place.
Its only a certificate course but its a new concept. Last year when I was
dreaming of maybe doing a course I couldn’t decide which medium I would choose –
this course does all my interests and more. The guy who runs it is just
brimming with passion and I really want to do it but I feel I may be taking a
serious risk by pushing myself to get there. At the moment life is just all
illness and I don’t know whether the benefits of having something else to think
about are going to outweigh the physical effort it will take to do it. The
course is 3 days a week but the staff seem to understand that my attendance may
be extremely minimal. I swapped groups so that my first studio subject is
ceramics. That way I can maybe do some at home and won’t be missing too much.
Hopefully later in the year I will be stronger and able to attend more. LOL?
I think of what Di says about pushing ones’ self and Dr Myhills saying that you
have to be OK on the sofa before you can move onto the next level. And my
instinct last year was that life was now a bit like a series of rings which
gradually increase – my sofa/bed, my loungeroom, my house, my yard, my
letterbox, etc. and my instincts are telling me I am leaping from the sofa
straight to the rest of the world. Is just knuckling down and concentrating
solely on ones health being realistic or self absorbed. If I am going to push
myself to do something should it be making J & R’s life easier (having house
and meals organised etc) or will there be benefits that flow from this ‘me’
And is it fair to go into a course knowing your illness will not enable you to really immerse yourself in all that's being offered by such a wonderfully passionate inspiring group of teachers.

I think I know that what I am considering is more than I can chew but so
nice to dream ... if I could just get a few extra skills I know it would breath new life into my artwork...

Wednesday, 8 February 2012

Me and M E.

Well how many ME bloggs have I read whose first post begin with something along the lines of "...I have been housebound/sick for a year now"? I guess when it first happens you think it couldn't possibly last and then after 12 months you realise that 1yr is probably just the start of this journey. My journey actually started in childhood with my mother trying to find answers and then it became more independent when I turned 19. I had 21 years of searching for answers and basically wondering why living a 'normal' life seemed easy to everyone except me. Work and life became more and more of a struggle and finally, in Oct. 2010 I got the flu and my body said "no more". Within 4 months I went from totally independent to disabled - I had to give up work, driving, lost my ability to walk and lots more. On a good day I can move around my house to get meals, have a shower, maybe do a bit of housework, a small creative task or walk to the letterbox. On a bad day my body is contorted in to a twisted form requiring assistance with walking, showering, eating, dressing and toileting. I can never leave my home unaccompanied.
The thing with ME is that every action generally has quite a significant consequence -fatigue, impaired cognitive ability, pain, stomache issues, inability to sleep, the list goes on and on - and your body starts to take this into consideration day and night, night and day. Only those closest to you get to see this cause and effect cycle - to the rest of the world ME is an invisible illness and this not only makes it difficult for acquaintances but also in our search for medical help.
In some respects I am lucky. My journey with this illness has been the reverse of many other sufferers who are knocked down suddenly. Unable to find answers from the medical world I have had to work lots out for myself through trial and error and instinct. There are many things that I already had in place, feelings I had come to terms with and most importantly my life partner has made many years of this journey with me. Discovering I actually had a Chronic Illness was almost a relief because I had been feeling, for so long, that my inability to keep up was all down to attitude and a terrible personality flaw. Now I know that I have actually achieved a great deal under very difficult circumstances.
Last year I chanced upon a Blogg and this lead to discovering that there were actually people all around the world with the same symptoms as myself. This was/is comforting but also disheartening because despite many years of knowledge re ME/cfs the deserved recognition of just how severe this illness is still seems to be ignored. I hope, especially for those younger than me (atleast), this attitude changes in coming years and we can have access to professional, knowledgeable care and support.