Today is May 12th ~ who’d have thunk it ~ a significant date in my diary.
It’s the day of the year that focuses on Nurses, it’s International Nurses Day (being as its Florence Nightingales birthday today) as well as International Myalgic Encephalomyelitis / Fibromyalgia / Ehlers Danlos Awareness day.
If you look back at my blogs you will see that historically I’ve been involved in awareness campaigns and fundraisers ~ year on year I have found the interest and support has dwindled. This may not be the bigger picture and just relating to folks around me but I found it disheartening that the majority of my supporters were the very people I was hoping to raise funds and awareness for. Aside from the fellow sufferers plus a few lovely friends I found no support and disinterest from everyone else, that hurt ~ it made me realise that it underlined the apathy from outsiders on understanding how much lives are changed by chronic illnesses that aren’t widely supported. Yet the same apathetic types are the first to lay into me for parking in a disabled spot as they don’t perceive me as disabled without being interested in understanding why.
I sound bitter, I am trying not to be but it is hard sometimes to be the bigger person when you feel attacked and when I try to defend myself come against a wall of indifference and lack of compassion. Thankfully the people who do listen are open to understanding and learning resulting in giving support to not only myself but others and often then try to continue to raise awareness to their social circle to spread the information.
I suppose its a case of you don’t care until you are faced with it either personally or through someone close to you.
So this year I’m not fund raising or doing anything special to raise awareness for Myalgic Encephalomyelitis and other invisible chronic illnesses. It will be the first year I haven’t participated in the Walk for Me fundraiser, I have been part of this wonderful movement since it started, and it saddens me that my time for such activity is over. However, I would like to say a huge thank you to each one of you who donated and supported me in the past and from now on I personally will be an avid supported instead of a doer.
Life can be a bugger, but it’s a precious bugger at that!
Having been a nurse and now a patient I give a huge holla out to all in the medical profession for been awesome and doing all you do to help care and support your patients, you work tirelessly in conditions far from perfect and I appreciate and respect you ~ Happy International Nurses Day to y’all. Although I no longer practice as a nurse I am and will always be one, something I am exceptionally proud of.
So, as for M.E. and international M.E. Awareness Day I offer up this poem ~ as you will see I am NOT a poet but wanted to do something to express in some small way how my chronic health conditions have altered my life irrevocably ~ I am frightened as year on year my health deteriorates and I have no foresight as to when it will plateau, which makes every day precious and important to do what I can, when I can for as long as I can.
So, I give to you my poem..
My life has changed forever, I am grieving for what should have been,
I’m not looking for your sympathy but to explain what can’t be seen.
Chronic illness crept insidiously into my world, changing my hopes and dreams,
The future altered to one unknown my life slowly unravelling from the seams.
I used to be strong and bold, no barrier could hold me back,
What I wanted I could achieve, nothing keeping me off track.
Career, husband, children ~ the whole shebang was offered up to me,
All of it I accepted and drank it up, living life fully and greedily.
I look back and am grateful for what I was given and had achieved,
I experienced life at its most glorious and perhaps that’s why I feel so bereaved?
Who knows why these things happen, why life does give and take so randomly,
It’s how we deal with it that changes things, especially when it occurs so suddenly.
There are dark and dreadful days when body and mind are at war,
The pain, the fatigue, the cognitive symptoms are draining me to my core.
I hold on to hope and focus on getting through each moment, it’s all I can do,
That along with the love and support from my family are what pull me through.
To look at me you will not see any illness or decay,
Yet it lives inside of me each every day.
When you look around you no doubt there will be,
People surrounding you who are just like me.
There are various invisible conditions that hamper folk like me,
We have aids, blue badges, medications but little you can see.
Don’t confront us when we use the disabled facilities or parking bays,
If you feel contempt or anger perhaps it’s you who should change your ways.
Family, dogs, photography, nature and spirituality are my focus,
Giving life pleasure and happiness ~ I don’t go for any hocus pocus.
I live, breath and appreciate, I don’t look too far ahead,
Living life the best I can for who knows when I’ll be dead!
Not the chirpiest of poems I must admit and the flow sort of falters somewhat but I hope it somehow conveys a little of how I feel?
Life is for living as best you can and I am doing just that. On Friday 17th May I will be 50 years old ~ ouch!
So this week has been all about pampering and making myself feel good. First up was the haircut ~ after two years growing my hair post charity head shave, I decided I couldn’t cope with the faff of long hair and had it ALL (pretty much) cut off. It feels A~M~A~Z~I~N~G and I love it!
Next operation eyebrows ~ shape and tint, and eyelashes ~ tint, as my face was now visible without all the hair. Then gel nails on fingers and toes ~ I normally don’t wear nail varnish on my fingers as the varnish feels weird on my nails but the gel polish feels different and I don’t mind it. I adore the glittery nails and have my youngest daughter to thank for doing not only the nails but my brows and lashes too.
Finally on Monday I will be re~purpling my hair as it’s faded a fair bit, to bring it up to the bright deep purple colour I love.
So, my message to anyone reading this and struggling from any illness, visible or invisible, supported or less so ~ you matter, you deserve compassion, love and support. Be kind to yourself and don’t let others define who you are. I hope you find a path that helps you on your journey through the adversity and ways to find happiness and satisfaction despite limitations that may be holding you back.
Life may be changing, times may be different to how you had dreamed them to be but you are here, you are you, embrace all who you are and work with it to live the best life you can.
My personal crutches aside from my husband and daughters are my dogs, photography, my discovery of the Wicca lifestyle, nature, my garden and taking the better days to “be” and “do” as much as I can.
So remember, as sung by Christina ~ you are beautiful ~ and don’t you forget it!