Wednesday, 11 April 2018
Life with Meniere's Disease
This will be a long one… please bear with me. I receive lots of criticism for raising Meniere's disease. My prime motive is and always will be raising awareness. I don't want sympathy… understanding would be progress. Honestly… hands up all those who knew what Meniere's disease was prior to it being raised? I did not even know what it was when I was diagnosed. I was told I had it, it wasn't cancer and I would have to learn to live with it! I still do not fully understand it.
Over the years, I have discovered some of the weird symptoms I have suffered, can be attributed to Meniere's disease. These light bulb moments tend to follow discussions with fellow sufferers and not from the professionals, who struggle to fully understand or appreciate the difficulties of dealing with it daily.
The most difficult aspect for me… its unpredictability. One day I am feeling well, energised, invincible and "normal" (although I'm not sure I have ever been normal, nor would I want to be!); the next day, I am totally laid up with the room spinning unable to control any element of my body.
The "IFFY" Days
It’s the "IFFY" days that get to me the most. Sadly, these days are frequent. I am not laid up with vertigo but deal with symptoms that make it very difficult to carry on day to day activities without making serious adjustments. These include – having vice like pressure across my ears and the back of my head; brain fog making it difficult to string a sentence together; trying to spend most of your energy masking the pain from loved ones; the constant swaying of the floor; complete sickly exhaustion where my whole-body aches.
but… the biggest daily fear – at any point, wherever I am, I could be struck with vertigo causing a drop attack. I have been so lucky up until now. I have only fallen three times outside – the first was pre-diagnosis, walking home with my son who was six at the time; the second when I was leafleting in the general election of 2015 and recently, in a car park. I have fallen in the house lots of times, thankfully the worst I have suffered is bruising to my arm, leg and lower back. No broken bones… yet!
All this leads to a huge lack of self-confidence and serious bouts of self-doubt. I never appreciated how hard life was with a disability or lifelong illness until it happened to me. We all think we are invincible. The mental strength that is required to get through a full day should never be underestimated.
The Hidden Pains of Meniere's
The incidental consequences of this disease:
1. Lack of understanding from professionals, employers and people in general
2. Feeling isolated – not just physically on days when I can not leave the house but in crowded rooms where I cannot hear conversations properly due to the tinnitus and background noise.
3. Having to miss out on events because I can not commit in case I am ill and can not make it.
4. Tired through explaining to people who say insensitive crap like "well you don't look ill!" Only my close family see me on my worst days.
5. Sensory overload – making mundane tasks – shopping – almost impossible without worrying or panicking. Oh, and the restaurants, hotels and supermarkets using patterned carpets and flooring!! DON'T!! The patterns move when I walk on them!
6. I have no patience for petty people and petty squabbles – life is to hard and way too short.
IT IS NOT ALL BAD.
There are positive aspects to Meniere's… well to living with it.
1. The brain fog and mixing up of my words gives us some huge laughs. Yoda has nothing on me! When I forget the word… it turns into a family guessing game!
2. I look like a cross between Bambi and Captain Jack Sparrow some days!
3. I appreciate every single day of my life and can categorically say, I took lots of days for granted before I became ill.
4. I am so thankful for my boys and how they handle our lives. They never put excessive expectations or pressure on me.
5. I can work at home. It's not conventional – I don't do conventional! It's tough, demoralising at times but it is my life and me – perfectly imperfect. I refuse to give in or give up hope. I may not be super talented, but I work hard and try even harder. If I can achieve my PhD and keep publishing work… I will have achieved my goals.
COPING WITH MENIERE'S
I am always asked… how do you cope? The short answer is… I have no choice. The easiest life would be to give up and let the Meniere's eat away at me. I am a fighter. I was born with the umbilical cord wrapped around my neck with a knot in it. It was touch and go whether I would survive. I did, probably disappointing to some!
I want to prove to the boys… and to myself… I can have a life with Meniere's. It took me a long time to accept what I lost, and to embrace what I gained. I wish to leave a legacy my boys can be proud of and if I can inspire one person to not give up and follow their dreams, I will have done a good job.
So how do I cope?
1. Accept on the bad days to go with the Meniere's flow.
2. Know when you can and can NOT exceed your limits.
3. Don't let professionals and the illness defeat you.
4. Surround yourself with inspirational people.
5. Laugh… a lot… usually at the disease's expense.
6. Low salt diet
7. Drink litres… and litres… and litres of water.
8. Exercise – it really does help me.
9. Don't hide away … its very tempting at times
10. Be as strong as YOU can be.
11. MUSIC… I love my music
12. I've learned I am strong, resilient and adaptable – I can even type with my eyes shut!! New party trick.
13. NEVER GIVE UP HOPE
Beyond the Lies is being proof read at present. I will confirm the publication date shortly. I am revisiting much of my drafts and early works. I have learned so much over the last few years especially self evaluation and improvement. Never stop learning.
We moved to a new house recently. The whole experience was highly traumatic but with sheer will, determination and bloody mindedness we got through it. I could not have done it without my amazing sons and adopted daughter. Now I need to rebalance my body… no pun intended!
Whilst we celebrate Liverpool FC emphatically booking their place in the semi final of the Champions League, we remember the lives that were taken and changed forever at Hillsborough. Still waiting for justice. #JFT96. Always remembered.
Thank you for all your continued support. Messages are always welcome. If I can help, I will. Stay safe everyone