This time last year I was rushed to A&E with a suspected stroke but after 4 days in hospital and numerous tests I was diagnosed with MS – a life changing and as yet incurable chronic illness. A year has passed – goodness knows where it went – just flashed past in an instant!
I will admit it has been hard to stay positive all the time although I do try very hard there are times that I want to just sit and cry feeling sorry for myself wishing that it would all go away and life would go back to how it was before.
It is not until you are faced with something life changing that you realise the things that you weren’t aware of – the lack of accessibility of some venues is something that never really crossed my mind before but having to walk up a long narrow set of stairs to get to the bathroom is now something I have to think about. I am lucky that I can still walk but sometimes I need a stick to help with my balance and the stares from people was something I wasn’t expecting. No one has been rude or said anything and it may just be me being self-conscious but I do feel that people look at me differently. I wanted to do a shoot with my friend Kerry Curl a very talented photographer with my walking cane to highlight the lack of diversity in fashion and disability – it is changing but we still have a long way to go.
Day to day life becomes more of a challenge and I never how I am going to feel when I get up in the morning. Constant pins and needles along with numbness in my legs makes walking difficult at times, when you can’t feel the ground beneath you it is hard. I find myself stumbling and constantly bumping into things all the time. My balance is totally off – my hubby makes me promise that I don’t climb on chairs to reach stuff on high shelves or cupboards when he isn’t around – I will admit I do occasionally as I am so impatient I can’t wait for him to come home!! Fatigue is another factor I am having to deal with, not just feeling tired as most people get but full on not being able to function – when getting out of bed is such an effort it is all you can manage for that day.
Learning to listen to my body is one thing I have had to get used to but I struggle to relax and switch off when I need to. The most frustrating thing I find is not having the energy I once had and realising that I can’t work at the same pace I used to – juggling many projects at one time is out of the question now as I am not physically or mentally able to do that anymore but trying to take a positive note from it I now say no to things that don’t really excite and concentrate on what my real passions are.
One thing it has made me realise that life is so unpredictable you don’t know what is around the corner so you can’t wait. So often we put things off until what we think is the right time – well the right time is NOW! Worrying about things that don’t really matter is not important – making sure that I spend my time, energy and money making memories rather than rather than accumulating more stuff. Not putting things off – not saving things for best – I know it may sound trivial but using the best china, your favourite frock or drinking a tea from a china teacup – all of these things add up to making every moment special.
My MS journey has only just started and I am still coming to terms with how it has changed my life and how it will impact on the future but I can’t focus on what may or may not happen but live each day to the full and make the most of every moment.