A life on the ocean wave with MdDS in the 21st Century…by Jude Austin

My journey began in 2006 after flying to New Zealand and back over a weekend, to do a training session with staff.

On my return I developed a flu/virus which sent me to bed for a number of days.

After going back to work, I began to feel unsteady to the point where I was holding onto the wall when I walked around the office. I felt like I was walking on a waterbed, began feeling confused, unable to think clearly and remember things.  It was terrifying.  I thought I’d had a stroke.

I went to the doctor many times and was dismissed as being stressed or tired. Often told, without any testing, that symptoms were psychological and to see a Counsellor. This type of gaslighting remains rampant and I would be rich if I had a dollar for every experience.

I had been training in Counselling and knew that this was physiological, not psychological.  However, to make sure it wasn’t me, I attended Counselling, investigated lots of therapies including Chiropractic, Acupuncture, Bowen Therapy, Massage, Kinesiology, change of diet, addition of vitamins, CBT and any other number of mind-based exercises to fix “my weakness”. Life became, more and more difficult.

I had been employed with the same Company over a 30-year period. However, there was no compassion or understanding when I became unwell. I volunteered once a week at Lifeline but work became so difficult, I had to discontinue.  It was decided that I would not be able to train staff locally when they were in the office, but would have to fly interstate on a regular basis.  This involved not only air travel and its inherent issues and fatigue, but also carrying a projector, laptop, manuals and associated ephemera as well as my clothing etc. This made it physically beyond my capacity. I weigh 52 kilograms soaking wet and while feisty and determined, there are some things that I just can’t do not matter how hard I try.

I left employment in 2010. My replacement had already been employed for several months with a view to taking my position.  I received lots of recognition and thanks from the people I had trained and supported, so I took that as confirmation that I must have been doing something right and that other forces were at work. Around the same time, my mother, who lived with us, was diagnosed with a very aggressive, terminal lung cancer and she passed away the month after I left work.

Throughout this time, I had continued to bounce off my GP hoping that she would see how I was coping emotionally, but really struggling physically.  Eventually In 2013, I was given a referral to a Neurologist whose first reaction was to check if I was a hypochondriac and doctor shopping for medications or just imagining things.  His second reaction was to put me on anti-depressants.  I’ve had serious reactions to many medications in the past so I’m very cautious about what I take.

The side effects I’ve experienced have been devastating and sometimes have taken months to get back to “normal”. Every day is difficult enough without having to endure experimentation as well. Unfortunately, many  GP’s and Specialists regard any push back or complaint about side effects as being “uncompliant”, “difficult”, “psychological issues” and the list goes on…

I mostly attended appointments by myself and later had to get my husband to take me. He could not believe how dismissive the doctors were.  He had seen me struggling for years and each medical visit was just another blow.  On one occasion he noticed that the doctor was already standing to see me to the door before I finished speaking and our joke became “That will be $300 please, Next…”

The Neurologist who diagnosed me in 2013 had just read an article somewhere and when I said “I feel like I’m walking on a waterbed” he connected the dots and said it sounded like MdDS – I had never heard of it, but he described the symptoms and I was excited that this condition may be a “real thing” and there may be a “real treatment”.

Unfortunately, again, the only treatments he could suggest were Counselling, antidepressants and more, or different antidepressants if the first ones didn’t work.  Against my better judgement, I persevered with a medication for a year until I found that I was emotionally flat-lining, not being able to feel happy or sad, not really feeling present in my own life. After I stopped taking the medication it took 6 months or more to recover myself and my appetite. It was an awful time.

On one occasion a Neurologist actually asked me if I was depressed – I was disappointed with myself that I became tearful when I started explaining to him that I wasn’t depressed, just very, very sad about all the things I’ve lost as a result of this condition.  Those losses included my job, any chance of employment at all, my volunteer work, my ability to just move around easily as I once had, to ride my motorbike, to keep up with my husband, to hang out the clothes, to go shopping, clean the house and keep studying – in fact just to enjoy the normal, mundane, day to day things of life.

I also told him I was an intelligent, educated and competent person who had held down many responsible jobs in the past and there was absolutely no psychological pay-off for being in this nightmare.

In 2014, as a result of efforts for recognition of MdDS by Chris Daws, I applied for Disability Support including Parking. This was a huge help with the concession card, and easier access to places due to reduced exertion. At first glance, I look ok, and so far have not been challenged for my use of parking.

I have had this for a long time now and I’m delighted to see that people are being diagnosed faster and in some cases without the gaslighting of the past.  On one hand I’m glad there is a support group, but it saddens me to see more and more people needing to join.  While it can be hard to remain optimistic, I’m grateful I still am, but feel enormous compassion for others who are doing it much tougher than me.


Letter to a Friend

How are you this week?
Pretty simple question – but here’s the thing…
I am not ok. I may never be ok again. This does not mean I do not hope. This does not mean I do not have happy moments, joy is so present. God is so present.
Just that I need to deal with my reality, because hoping for change every day and being disappointed is leaving me broken.
You see, I have realised that there is a problem in pretending to be fine – that people don’t see my reality. So here goes… I may look fine, with a smile on my face even. I may be laughing and joking and look totally normal – but know that it takes me an inordinate amount of effort to look ok (plus pain & anxiety meds too) It takes me days to recover from whatever it was we were doing when you saw me.
What the dr says I have is a chronic vestibular disorder that effects my nervous system (the inner ear, brain, spinal cord and nerves) Chronic means that it cannot be cured by medication and it MAY NEVER go away. Chronic means that it is with me all the time – even when I am pretending to be fine.
I get migraine’s, dizziness, I lose my sense of balance at times and my ears feel blocked making it hard to hear. I have fatigue unlike anything I have experienced… even being a mom of two little ones with my own business. I can have weeks and months where I have to fight just to get out of bed to get the kids to school knowing my day is going to be nothing more than the disappointment of climbing back under the covers. My vestibular system betrays me making movement, light and noise impossible to deal with at times.
I have had the darkest, loneliest, most painful year of my life. My thoughts have turned against me on too many occasions – trying to convince my heart that everyone would be better off without me, which I can’t deal with these dreadful symptoms another day… but GOD HAS ME. He always has me, even in my darkest moments… There is a purpose for this and I know I have strength, resilience, empathy and compassion now that could literally move mountains for Him! (Ha, if only I could get out of bed!)
Please hear me when I say I love you for caring… I know in your heart when you ask about my health. But it is so incredibly hard having to say I am STILL not well (remember chronic – this is not
going away or changing – the difference in what you see is when I have done nothing all week so I have the strength to pretend I am ok)
I promise you if my miracle happens and I get well – I will be shouting it from the rooftops… you will not miss it!
But, until then can we please talk about other things? Can we take the focus off my health and laugh together when I am well enough? I need these moments, I need to share in your life when I can, see the joy! Can we ask each other what made us smile this week instead of how are you? I love that you have stuck by me and there is so much good in this beautiful life God has given us, so much we can do to make a difference for others – so please let’s focus on that instead.
I know you care, I can see it in your eyes, I can feel it when you hug me tight…. but please don’t ask me how I am. It is so nice to just forget for a little while. So smile, ask how the kids are (or my huge puppy, my cheeky cat or what my fav show was this week, which pj’s I rocked) I need you to know even when I am absent, or quiet that I cherish you and love you too.
Love & Blessings always Your Chronically Unwell friend x

Keeping My World Afloat – Anonymous

Ever wondered what it feels like to live with MdDS?

I don’t look sick, well mostly I suppose.

Until you see me stumble… or notice that I am not around much anymore… that I don’t seem so friendly (cause even talking is now so hard)

I sometimes wonder if it would be easier to have a cast on, something that people can see, that is easy to explain…

So to help you understand, here is the symptoms I have to deal with most days with MdDS and vestibular migraine.

The unstoppable, relentless movement… all the time, every moment, of every day.

Constantly being off balance, feeling like I will fall – somehow even lying down in bed.
The panic attacks that overwhelm me some nights, as if my own body has had enough of dealing with this monster and is urging my lungs to just stop breathing.

An aching neck from all the tension and a strange pain behind my eyes and nose…
The too often splitting headache that never wants to leave, the constant pressure in my head as if it would burst like a balloon…
The brain fog which keeps me from being productive, and sometimes even making sense.
Ears that are somehow filled with invisible cotton wool making it hard to hear.
The nausea – always in the background, more often then I would like taking over and leaving me weak and spent on the bathroom floor…
The over sensitivity – to light, to noise, to crowds, to shops, to any amount of stress, to movement – any movement… Seeming to life.
The all consuming fatigue from dealing with it all for far too long.
The inability to rest – even lying in bed – having to brace against the relentless rocking and fighting off the nightmares.

The inevitable depression that comes from dealing with it all for too long.

People ask “How are you? How was your day?”   Which is kind and caring, I know.

But how do you explain it?  How can you help them understand how it really feels when your brain won’t engage to say what you want to?

When does ‘Ok, thanks’ go from a socially acceptable response to a downright lie?

So for those who do want to know, this is my typical day with MdDS and vestibular migraine…

My phone alarm is supposed to be bird song but it might as well be a fire alarm.
Do I really have to do this again? Really?
That feeling of dread takes hold before I even open my eyes…

There they are! The reason I keep on fighting. Cuddles in bed are the best!
Then someone laughs – as they should – or moves – how could they not?
Please Lord, not yet…

The room starts moving. My head starts pounding and my stomach churns…
They don’t feel it.

They don’t notice my head suddenly caught in an invisible vice.

They thankfully don’t seem to notice that the bed won’t stop falling…

Hold onto the side table, the wall – just to get up.

Don’t stumble… I have enough bruises already.

Some days I just can’t do it any more. The dreadful movement as the floor moves beneath my feet and the walls bend and weave.

It is all Just Too Much…

Of course I know this movement is not real – but its effect on my body is as real as a SLAP in the face.

The kind strong enough to knock you to the ground…

Kids are happily at school. No idea how.

They didn’t notice how bad I felt today. Thank God for that!

I go for a drive when it all gets too much… The movement is somehow soothing for a bit – ironic I know.

I get home to washing not done, to a floor not cleaned,
because these easy chores have become impossibly difficult most days.
I cancel my doctor’s appointment… Again.  Surely when you feel this bad that is what you do?

Go to the doctor for help?  But what is the point after trying so many?

“Sorry, what do you have again??  Hmmm…”
You see I am somehow supposed to be my own expert.
I have no medical training, just the hours upon hours of research I have done because I have no choice but to fight this fight for myself…
Too often the visit ends with me sitting in a frustrated puddle of tears. Again.
Because nothing seems to work for any of us.  Just wait it out, hopefully it will just go away…

Talking to a man who has had it for 8 years makes me feel pretty hopeless.

I crawl back into my bed… exhausted from a shower that shouldn’t be so hard.

Tired of feeling like a drunk at 9am without having had a drink. Dealing with the epic hangover without the fun of the party.

Watch something, anything, everything… who cares what?
For too many hours… Just trying to escape my ‘new normal’.
Another day of nothing really done.
I am too exhausted from clinging onto the side of this boat for months on end…

I have to drag myself out of bed to get them again. My sweet babies who I love more than life itself.

Take more pills.  Put on that happy mask – please let them believe I am ok today.

I just can’t seem to be with them for long enough anymore…
Too much movement… Too much talking… Too loud… Too much happy (how can that be a thing?)

Too much everything…

Just too overwhelming.

So much so that it becomes physically painful.

My friends must think I don’t care anymore, (my business is certainly in tatters…)

I just can’t see you as often, and probably too often don’t reply to your texts on time… oh how I wish I could.

When we do catch up I try to be ok until you go so you don’t see me collapse in a heap after you leave from the effort your much needed visit took.

Truth be told I would probably do anything to avoid you seeing how I really feel.

The fridge is empty again, because shopping is like trying to navigate a fun house of mirrors with a trampoline floor, a sore head and churning stomach.
But I get it done, somehow. Not looking up, trying to avoid anyone – as interacting – even talking seems so hard now too.

I try not to cry in front of him anymore.  I worry my pain hurts him too much.
How can I so unwillingly break his heart?

So I bite my lip. Blink back my tears and ask him about his day.  But there they are anyway, those sad eyes… and my guilt.
I can’t hide this monster from him as much as I would like.  So I smile (or try to), we plan the fun I know my body can no longer cope with…

I get up (if I can) and try to carry on.

Pushing through when I can barely stand.
Making dinner too often ending up with me in a heap, to nauseous to eat or even stand.

But cooking was always my thing, looking after my family, making the fun, being part of the happy.

None of these are easy things anymore…

It is late – he needs to sleep.

He works so hard for us every day.  My heart is so proud of him, full of love for this man I get to do life with every day.

His arms are the one place I still feel safe.

I can’t help being a little jealous that he still gets to go to work and make a difference,

while I sit in the dark trying to fight off another panic attack, that if I am totally honest,

a part of me would rather I didn’t win…

There is that guilt again.
That feeling is becoming far too familiar.  The dark hole is getting too deep.

But they need me… and I need them more than they could ever know.

I have to cope, I have to keep going, I have to keep it all together till tomorrow,

So I can do it all again.

But, we do it again, day after day, cause you never know when the answer will come,

when someone will find the solution to finally getting rid of this horrible monster and it can all finally just stop!