Today is the first day of #balanceawarenessweek2019 and to raise awareness I thought I would share a piece I wrote back in December in 2015 about my experience in when I was first diagnosed with Meniere's and chronic migraines. I wrote this for my friends and people I work with to try and help them understand.
Its was interesting to re read and also acknowledge how far I have come in the last few years. While I still have bad days, I have definitely learnt a few tricks to keep me sane. I am very lucky I have a job which is so flexible. I remember at one point I took time out to see what other career options were available however, nothing sat well with me and I am so happy I did not give up. To be honest I have have only had a few minor incidents on jobs and learnt to listen to my body.
The biggest hurdle for me was to get over my fear and insecurity. I was scared as my body had failed me and at my lowest I didn't want to leave the house. The best treatment I got was CBT training. It literally changed my perspective and my therapist gave myself simple tasks to complete. It really helped me get my independence back.
It used to upset me that people would think I was drunk as I am often unsteady on my feet. I have a running joke that the floor has it in for me and well sometimes I just need to check the walls, tables, and sometimes chairs. Anyway, enough of an introduction, a letter from myself. If you would like to know more please do check out The Meniere's Society.
Who the hell is Ménière?
Hi there. It's me. Roz.
I'm sending you this email because you're my friend, there's something I'd like you to know, and sometime soon I might need your help.
The last few weeks have been a real struggle for me, I still get upset thinking and talking about it (and no one likes a cry baby), but everyone has been lovely, curious and concerned about me which is why I wanted to offer some sort of update. I hope this won't be too long and boring but I do need to be thorough.
You might already know that I have been diagnosed with Ménière's disease. Maybe you've already looked it up and found some information, but let me explain:
Ménière's disease is a rare disorder that affects the inner ear. It is permanent. It can cause vertigo, tinnitus, hearing loss, and a feeling of pressure deep inside the ear. It is different from person to person. Basically it messes up your sense of balance and you feel sick all the time. You have to eat a low salt diet (which is as difficult as you think it is). And then there's the attacks...
Yeah... It is all a little overwhelming.
For me I find I tire easily. Most days I feel nauseaus and a little light headed. This can progress to vomiting and major dizzy spells. My eye sight can go, and I find it difficult to focus. I was never the most stable of my feet, but now... well... my balance isn’t the best to put it mildly.
The other main and constant symptom is my hearing. I have lost about half of my hearing in my left ear . I can not tell you if this is permanent.(Update but it does look likely although I am still holding out for some cure). This plus the constant ringing makes it difficult for me to hear. In large groups or noisy surroundings I will struggle and often feel lost in the noise. I sometime can not differentiate between it all. So please: If I don’t respond, I probably didn't hear you.
So... Because we probably do things together... It might just happen that you're there when I have an attack. (The room spins, my hearing goes, I feel really sick and have to lie down.)
Don't be scared. The worst that can happen is that I fall over into a pool of my own vomit twatting my head. It's basically a student night out.
You probably know me well enough to know I find this really embarrassing. And scary. I'm still learning how my body reacts and what may or may not trigger an attack. They can happen suddenly and without warning. If you are there when I have an attack please help me find a quiet area and let me (if needed) lie down and focus on my breathing to relax. I’m not going to lie: It probably won’t be pretty and I may be very disorientated. If needed please call Chris to come and collect me.
This is a scary time for me and one message I have read throughout is the importance of staying positive. I can not thank you enough for the love and support I've already received.
A lot of people suffering from MD battle depression. (Because they can't eat normally, are always dizzy and nauseous, are constantly on edge they might get an attack.) I know I have gone though a round or three fighting this particular demon just these last few weeks. It is difficult one to tackle and I am trying to stay strong and positive. Finding the changes needed to continue having a ‘normal’ life.
I've also got brain fog. (It's like baby brain without the baby...) I struggle to focus on daily task. My mind will often escape me and I am forgetful. Anyway, what was I saying? Oh yes:
Bare with me as I find my balance. (Pun intended.) And thank you for being my friend.
Just below is an article probably explaining what I'm trying to say better than I just have...
An important part of the management of vestibular disorders is the ability of relatives and friends to understand and support their loved one whilst, at the same time, trying to overcome the bewilderment of the situation which is not characterised by the usual visible symptoms and medicinal cures of more common complaints. One minute your friend or loved one is looking perfectly healthy and engaging in normal activities and the next they can’t talk, they can’t walk, they are confused, vomiting and distressed. It is important that you understand as much as you can about vestibular disorders to support those affected and help them regain their confidence.
Your life is likely to be disrupted from time to time, plans may have to change suddenly and appointments cancelled without any prior warning. Feelings of frustration and anger are valid and understandable, but it’s important that how you express them to the sufferer. Whatever you do, don’t say “Pull yourself together it is all in the mind”. They have a physical disability for which there is no known cause or cure. They will be feeling a terrible burden on you. Listen to their fear and anxieties - they are real and understandable because no one can predict when an attack is going to occur. Don’t wrap them up in cotton wool but gently persuade them to take up their normal activities as soon as they have recovered from an attack which can take a couple of days. It is important that the person affected is seen by a specialist experienced in treating vestibular disorders. What is needed most is your love, reassurance, understanding, patience and acceptance to help them manage their condition.
weekly musing from Rosalind Alcazar Photography