Friday, 16 December 2016

Meniere’s and Masters


I do what most Mum’s do, I play down my illness because I don’t want it to define who I am. I also think it is a way of deceiving myself -  it is not getting any worse or I will wake up and be miraculously cured!

It’s difficult to explain Meniere’s to non- sufferers. There are so many associated symptoms, not just vertigo or drop attacks – I know there I go again ‘JUST’. The fullness feeling in my ears, the pressure on the back of my neck and the jaw aches drive me mad. Insanity comes though from the tinnitus and brain fog!

Tinnitus

Don’t ever take your silence for granted! I did and oh I wish I had it back now! Tinnitus therapy includes methods to block it out and some days I can but other days it is like having a swarm of annoying wasps in my head or an angry ocean stirred by a brutal storm! It’s there ALL THE BLOOMING TIME! – speaking, listening, reading, sleeping – ALL THE TIME. It’s so bad on some days, I can’t actually hear the words coming out of my mouth OR what people say to me. I literally want to scream “shut up, just shut up!” – to the noises in my head not the people… well… maybe sometimes the people!

Brain Fog

This is actually my nemesis. My Kryptonite! When it hits, I can’t function effectively. Shopping, writing, reading all become mammoth tasks. I open the laptop and stare at it, trying to remember what I opened it for. I’ve got to the shop for ONE item and not remembered what the item was. I’ll start a sentence and can’t remember the last words – the boys finish my sentences off now.  It makes us laugh but it also makes me cry. It’s frustrating, embarrassing, life limiting and makes me look totally insane!

Both Tinnitus and Brain Fog make studying a real challenge especially in class rooms and when I’m researching. People laugh when I tell them I have to study in an open, noisy place – silent rooms are not silent to me and I’d rather have people noise than wasps!

I had not realised how much the symptoms had progressed. Yes…each day has been a challenge for many years but I got by because I worked from home and the only deadlines I had were self-imposed. The Masters study has highlighted the growing difficulties I, and many other sufferers face. Last Saturday I had a meltdown. I couldn’t cope with the brain fog, the fullness in my ears and trying to concentrate on writing a Masters paper that is due in this Sunday. Looking back, I was too hard on myself but sometimes you have to just let it out! I was ready to give up until Wes reminded me of the words I gave to him when he found things tough. It worked! He is amazing.

90% of the time I accept my limitations and have learned to work around them. Sure it may take me longer than others but that does not matter, I’ve never been in competition with anyone…ever. I have proven to myself how strong I actually am. 2016 has been a tough year with very tough lessons. Would I change it? Probably not. I have:

1.       Cut people out of my life that do not appreciate, know or value me.   They convinced me I was not worth anything. They were very, very wrong.

2.       Proven my gut instincts for thirty plus years were not wrong at all.

3.       Taught myself how to develop and write screenplays.

4.       Written another full length novel and improved my writing skills ten-fold.

5.       Started work on a project about a subject I have studied for over twenty years.

6.       Started a MSc Information Technology degree.

7.       Most of all, supported and helped two fine young men to develop and blossom into decent human beings.

What’s a few sick days in between all of this. Life is a challenge for all of us… it is also exciting.

2017 will continue to be a challenge but I will NEVER give up. Meniere’s will not beat me. I am not the same person I was at the start of this year. I have grown so much and I am forever grateful and thankful of the support and love I have received from my true friends and my gorgeous boys.

Meniere’s has made me appreciate how precious time is. It’s taught me to cherish the good days and ride out the bad days but to never waste time.

Christmas

I don’t know who was more excited about the end of the school term today – Lucas or me. It’s a tough call! I love the boys being home as much as they love being here. Christmas is very much a collaborative affair. We are going to play foot golf on Christmas Eve. We always try to take Lucas out for a couple of hours and we’ve never played this before. I’m sure it will be a giggle. Apart from a movie night to see Rogue One and a football team kick about on the 29th, we do not have any other plans. Our Christmas consists of pyjamas and board games. PERFECT. When the boys are in bed, I will be studying and writing - no rest for the wicked!

Whatever you are doing this year, I hope you are truly happy and spending it with the people who truly deserve you. I know I am.

Thank you for your support this year. It really does mean a lot to me.

Shall we see what 2017 has in store for us all?

Much love

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