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Out with the old, in with the new.

2017 is almost upon us – I find it so difficult to comprehend that this year is almost done. The other day we sat around the table and did our annual, “what have your highlights been this year?” game. To be blunt, I couldn’t think of many. There have been many headlines about how 2016 has been the pits in terms of celebrity deaths, Brexit and Trump and my year fits quite neatly into that box of crap.

2016-deaths

Obviously I enjoyed our joint birthday bash and there have been the other days out that have lifted my spirits but all in all the year has been littered with appointments, frustrations, tears and sadness….oh and lots of sleep!

I do understand the whole ‘new year new start’ business yet when the clock strikes midnight on Saturday, things won’t magically change. As I did last year, I still have hope that in another year’s time things will be ever so much brighter but I now also have an inkling of fear that that won’t be the case. I’m still no closer really to a diagnosis, medication is still being figured out and if anything, I am in a worse state than I was a year ago. Therefore I approach New Year’s Eve with trepidation. Whereas last year I found Christmas much harder, this year I find myself getting emotional even thinking about the countdown to 2017. I don’t have any plans and 2016 feels like a total waste of my life. I know people will say, it’s not, you’ve done so much in other ways, but to me, this year has been rubbish.

I usually make resolutions like most people do…give up certain things, lose weight, take up a new hobby etc but this year I’m not making them. I’m just going to see what comes along and embrace moments with the aim of getting and feeling better about my life and myself. I guess this is because I fear that making any resolutions about my true hopes could end in more disappointment and to be honest, I couldn’t really deal with that. I think I’ve reached a level of stale mate. I’m now an accomplished actress of disguise but I’m finding it harder and harder to “be strong” “be positive” “have hope.” Living through 16 months of this has, in all honesty, been a living hell and because most of what I’m experiencing is invisible, it makes it even harder to explain and cope with.

Watching my friends and family go through their own hardships this year and not being able to help in the way healthy Hannah would have, has been hard to deal with. It’s been a learning curve to think up new ways of helping. I think this year has seen a lot of us having to really grow up and face grown up issues but thankfully we have grown together and it’s made us stronger. Life can be so cruel and unfair but unfortunately that is life and we have to keep going because what’s the other option? It’s the relationships we make along the way that help us put one foot in front of the other and that should never be taken for granted. Any type of relationship needs to be worked at, they are two-way interactions and sometimes cracks turn into great big crevasses that can’t be repaired but that is also a lesson worth learning.

relationship

I’m aware that this post seems very doom and gloom and don’t get me wrong, I will be thrilled to see the back of 2016 and start a fresh. Maybe a new year will make me feel stronger again and I do hope that’s the case. I have lots of things to look forward to; watching my friends move into new homes, watching their children grow up, seeing my little brother move out and start making his own home with Yaz and seeing what my parents will get up to now they’re both retired! I live vicariously through all of these things. I don’t want to be tip toed around incase I get hurt or jealous. I want to hear what everyone else is doing, in the same way that I want to hear if they aren’t having a great time of things. Just because I have a long-term illness doesn’t mean that what anyone else is going through is any less important. I can still listen, give cuddles and be a shoulder. Like I said – relationships are a two-way thing.

 

I truly hope that 2017 is much perkier for all of us and that there are more moments of sunshine that we don’t have to make for ourselves. Here’s to light at the end of tunnels, to giving each other strength when we can’t muster our own, to bringing smiles to each others faces and to providing love, kindness and compassion as and when it’s needed.

Happy New Year everyone…see you on the flip side!

#hairlesshannah

 

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1 year blogiversary!

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!

patch

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.

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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.

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#hairlesshannah