Merry Christmas

Christmas is a funny time for myelopathers.  Maybe some of us feel under pressure to produce the perfect Christmas day and are already stooped in pain and it’s only Christmas Eve. Maybe others isolate themselves because they lack the energy to get dressed and join in with family.  We say ours is a hidden disability but I think that is sometimes an excuse we make because our families lack empathy. When I move it’s all too obvious that something is amiss.  The pain of course invisibly attacks the nervous system but I think it’s evident in my grimace and the way my body caves inwards that I’m suffering.

I don’t personally know any of you…but I think about you…my friends united against this horrible degenerative disease.  I hope that your family and friends are kind to you, that they rally round you…that they understand your limitations.

I never imagined seven years ago when I was diagnosed that the battle would be this huge, this gruelling, this demoralising.  If you’d asked me then was I coping…I’d say there wasn’t anything I couldn’t conquer.  Right now I feel like I’m at war with myself. I’m a person I don’t recognise.  I’m jumpy, anxious, easily upset, unable to form coherent sentences, all weekend I’ve called Kitty’s boyfriend Jack when his name is Zac.  He’s such a dear, he worked out that becames my other daughter’s partner is James I was mixing the two together.  I can’t remember anything.  Historically it’s been my husband who upsets the apple cart, right now it’s me…which adds to my guilt.  Other than being in constant pain…I’m ticketty boo.

Regardless of everything I have just moaned about I couldn’t be happier.  On Saturday I sat enjoying a Christmas lunch with the five people I love most in the world.  I used to say to them I love you more than all the desserts in the world, all the seas and when I look at my husband, sons and daughters I know I am the luckiest person.  They totally get me, they know the ugly side of me and they do whatever they can to make me as comfortable and supported as anyone with a painful disability can be.

And I want that for you all this Christmas. I think right now if you feel unhappy or distressed you should stop doing what you are doing.  It’s better to have beans on toast and feel as well and as happy as you can be.  If your family are taking you for granted and letting you dig a hole for yourself tidying and cooking you owe it to yourself to say no this is to much, no I’m not coping.

I’ve had serious mental health issues this year.  I’ve never been so glad to see the back of of a year in my life.  I’ve nearly ruined Christmas; I just managed to pull myself together for the family meal. I know I need to keep communicating with my family, to admit when I’m in pain, to not physically push myself because I’m gaining weight which I hate.

Yes I’m disabled, yes my life is very limited, but I can’t expect others to know how bad I feel if I don’t tell them. It’s my responsibility to ask for help.  I owe it to my family to ask for help.

I’m taking control of my life back by escaping into writing, by blogging and now vlogging.  I am going to shout from the rooftops that I feel like I’ve been twisted inside out I’m in so much pain, that’s what cervical myelopathy does to you…But there is always hope and sunny days ahead.  Great things are ahead of us.  Be vocal. Cry. Sing. Argue…but don’t suffer silently.  You deserve better.

Happy Christmas myelopathers.  Thank you for being there for me through https://www.facebook.com/groups/myelopathy.support/ Thank youhttps://www.facebook.com/myelopathy.org/   I intend to raise money through Jen’s bookclub The BB’s, who are so brilliant with me, my book sales – if anyone needs a present for 14+ to adult ladies please buy Random Attachment, 10% of royalties go to Myelopathy.org and 10% to YMCA West London https://www.amazon.co.uk/RANDOM-ATTACHMENT-Gertrude-T-Kitty/dp/1790375347/ref=sr_1_3?ie=UTF8&qid=1544651916&sr=8-3&keywords=random+attachment

And lastly if anyone wants to get to know me better and my take on myelopathy please check out my youtube channel https://www.youtube.com/channel/UCwao3_-p4ISUoWlVOhZYnsQ

 

 

 

 

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MY RANDOM VLOG

Us myelopathers live in a higgeldy piggeldy world. Nothing is straight forward, nothing is set in stone when it comes to our condition. It’s eight years ago this month that I had my first operation. When I think of the physical and mental battle I’ve had since then it’s amazing I’m still here never mind have written a book. I don’t say this lightly; my battle with myelopathy has been as exhausting mentally as it has physically.  I can’t tell you how often I’ve been on the edge of madness.  Connecting with others sufferers through http://www.myelopathy.org/support.html has helped me understand my condition as well as supported my mental health.  Any long term illness with chronic pain can lead to depression, acting out of character, gambling, drinking, debt – blogging is a way of letting off steam whilst connecting with the myelopathy community.

My husband and children have been total rocks. They understand the condition well because they live it with me. They’ve seen me on my hands and knees trying to get from the sofa to the kitchen to put the kettle on because I want to do it for myself.  They’ve seen me bent over double, breathing like I’m in labour because the pain is so acute it takes my breath away.  I’ve spent the last seven years stumbling, swaying, knocking into, tripping over, falling onto a world that seems to be erratically spinning around me.

I’ve always been a glass half full person. When I couldn’t work, walk, sleep I wrote.  I poured all my pain, frustration and despair into blogging and writing Young Adult romantic thrillers.

Two weeks ago I self published Random Attachment. For me this is a huge thing.  A massive achievement.  Also it’s my ray of hope.  I won’t bore you with what I’ve lost, with what my condition has stripped me of because I don’t feel sorry for myself. But writing has enabled me to reinvent myself, to be Gertrude T Kitty, author. It’s taken the spotlight off my condition and has given me back some self esteem.

I don’t imagine my book will make multi million sales or I’ll have royalties into the thousands but whatever I have once Amazon take their cut I hope will support my writing and help YMCA West London, Centrepoint and http://www.myelopathy.org/  Up to now I have written for myself, now I am writing for others.  I’ve worked this last fortnight on Twittering, Facebooking, vlogging, anything to get my book promoted. My husband has been photocopying and cutting up little adverts for Random Attachment. I’ve been very unwell and immobile during this time so have only left the house once but I did put it up in a newsagent and coffee shop in Pinner.  I am up and feeling well today so have my photocopies and pins in my bag ready to pin it up whereever I legally can.  I’m asking you, if you could print out the advert and pin it up on a board where you work, or where your children have clubs.

My lovely bookclubbers have bought my book. Thank you for supporting me. I’m dreading feedback because I know how high our expectations are when we critique some of the greats in literature…remember I’m a minnow.

So here I am before Christmas, with a book that is all the more precious to me because my daughters were so instrumental in supporting me during writing and getting it out there.

Yesterday I filmed my first vlog about my book.  It took me five attempts because I was so waffly and repeatedly said ‘you know’, ‘so’, ‘erm’.   But here is the link to it and the link to my Young Adult (unsuitable for under 14’s) romantic, thriller.  I would love if you’d follow me on Twitter @gertrudetkitty. If you buy my book that would be wonderful…if you read it that would be even better and your critique would be the icing on the cake…oh and sharing it. It’s a lot, I know, because it’s hitting your purses, wallets and your time. God I hope the book’s not terrible after all this.

 

Thank you.