Can you believe it is one whole year since I wrote my first ever blog post? I certainly can’t. Although this year has felt like one of the longest, toughest years,when I read over that first blog I realised how much has changed. How much I have changed.
Throughout the year I have had to learn to deal with a wide range of emotions. It seems like whenever I take a step forward, inevitably (it seems) something happens to knock me back again. It’s like I am constantly swimming towards shore and as it comes into sight a strong current comes to sweep me back out to sea again. I have almost come to accept that now which makes me sad. I continue to be as positive as I can be but I must admit, I am finding that hard.
However, having said all of this, I finally feel like things are beginning to move in the right direction. The neurologist we are seeing has been brilliant. He wants to get to the crux of all the medications I’m on by seeing which ones are actually helping me and which we can get rid of or even replace with something better. He has also prescribed anaesthetic patches which I can put on my head to hopefully numb the pins and needles and dull the burning sensation. I’m on day 2 now and as yet nothing has changed but I am hopeful that with perseverance they will be the best Christmas present ever!
I definitely feel like I am braver than I was last year. Because I’ve lost some of my independence, well, quite a lot of it, it makes me even more determined to be strong and brave when there is no one to support me. For example, this week I went up to Kings by myself and had a skin biopsy and more blood tests. Dad tried his very best to get to be with me but London trains decided to mess things up and mum was in Wales and I told her in no uncertain terms that I’d be so angry with her if she came back! And anyway, she has always said that if she’s not there in person, she is always on my shoulder to give me love and support. I must admit I was so nervous but I survived it. Yes I cried in the middle of the blood test waiting room but who cares?!
I’m also much better at asking for help when I need it. Telling dad I need to hold onto his arm because I’m shaky and my legs are weak. Before I would have struggled on. Not feeling embarrassed when I can’t open a bottle or carry something heavy because of my stupid joints! Little things but huge steps for me.
I may have bought a flat and lived alone for several years, lived in Dubai and travelled the world but this year has been the biggest learning curve for me. In many ways I feel I’ve reverted to childhood because I need to depend on my family so much in every way imaginable but I also feel more of an adult than ever before.
Like I have said many times, I have concentrated on focussing on the small things to make me happy. Last week a group of my beautiful friends organised a Christmas meal for me. They took into consideration all the hurdles that prevent me from doing things and eliminated them so that I could enjoy the evening. They will never know what that meant to me. I sat back that evening and looked around the table and also thought of my other friends who weren’t there and thought about how amazing they have been over the last twelve months and I actually felt slightly emotional. These girls have all been though unbelievably tough times over the last year, some for more time than that, yet they aren’t inward looking. They are always there when you need them, always supportive, always the friends that have become like family. I sat there and just thought how blinking lucky I am. Some people won’t ever experience friendships like I have or have the bond that I have with my family.
Christmas is fast approaching and last year there is not one photograph of me. This year there will be, with the patch on my head and everything! I’d never really experienced the emotions that some people talk about when it comes to Christmas but last year I did. It was a bizarre experience. Christmas is another social media aspiration; everyone laughing and joking in their jumpers, sipping champagne,eating the best lunch and playing games. But life isn’t like that. Last year I didn’t want Christmas because I hated my life, I wasn’t in a happy place. It is one day but I didn’t really want it to happen, it was the first time I’d ever cried at Christmas. It’s such a funny time of year but it has always been one of my favourite times. I am all in for lights and festivities! So this year, although so much is going on and there’s no hair, still a world of pain and uncertainty, I am going to treat it like another day but just with a little more fun thrown in.
So, before I sign off I want to have a moment to write a mini Oscars speech! Firstly by saying thank you to everyone who keeps reading my blog and sends messages of encouragement and love – they mean the world and keep the positivity levels up! To all the people who have given up their own precious time to help me with reiki and reflexology and provide support with trying to do a little bit of work. I often wonder why I have been so lucky to have relationships with such amazingly talented, kind people – thank you, everything you’ve done has helped me deal with my circumstances and take steps in the right direction. Thank you to my friends who keep me laughing, help me feel normal and hold no grudges when I have to cancel or leave early. Each one of you are diamonds and I look forward to 2017 where we can continue to work out life’s ups and downs together! And finally, thank you to my family who goodness knows have also had their lives interrupted and turned upside down – there are no words but I think you know how grateful I am and how much I love you.
All that’s left to say is Merry Christmas and may 2017 bring you good health, good luck and good times.