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