Seven years ago my left ear 'blocked' and I couldn't hear anything out of it. It drove me crazy. I went from GP to GP to GP and kept getting told that it was a virus and would go away. I was prescribed medications to relieve mucous congestion in my nasal and ear passages. Nothing worked.
Then one night, three months after my ear had blocked, I suddenly felt very 'odd'. Something was wrong. I felt like any slight movements made by me were magnified. I made it to the couch and then it happened - my world started spinning out of control. Like being on a fast roller-coaster ride stuck on a downwards path. I couldn't get off. I couldn't stop it. I couldn't speak. I couldn't move - any tiny movement, like moving my head 1cm, felt much, much bigger as though my head were actually doing a 360 degree spin on it's axis. Then the relentless vomiting started. No breaks. Vomit. Vomit. Vomit. I was in hell. How do I stop this ride?? Get me off!
Hours later a doctor arrived. An injection given to stop the spinning and vomiting and after half an hour I fell into a very deep sleep. I was wrecked for days afterwards.
Doctors then told me that I must have labryithtitis (virus in my ear). Seriously?? For three months!! Finally I saw a specialist and after some tests I was finally diagnosed with something that fit - Ménière's Disease. I was told - nothing you can do about that, no cure, no solution, no help. "Good luck with that".
I started a drug that does help some people, changed my diet and saw an osteopath and my ear finally drained after being blocked for 7 months. I could hear again!! I kept my diet for a long time, kept with the medication and my ear was fine. I was fine. Maybe I could beat this after all? I lived a full life again. Travel, work, slowly went off my diet and enjoyed a full life thinking I was fine.
Then towards the end of pregnancy last year my ear blocked again! A couple of times I woke spinning and had to call Greg home. I was scared about being on my own with our child in my belly - unable to eat, get up, do anything. Thankfully they weren't too bad and didn't last long. After Maya was born I had another couple of vertigo attacks. Again thankfully they weren't too bad and didn't last too long. Mostly I was OK. I felt fine - except for being unable to hear properly! I saw a specialist again and was told I couldn't take any drugs while breast feeding. Breast feeding Maya was so important to me. I was fine. I could manage. I would feed until she was 12 months and then start my medications again.
When Maya was 10 1/2 months old I drove home from mother's group, parked the car, got out, started walking around to get Maya out and realised something was very wrong. I couldn't walk. I was spinning. I collapsed. My phone was in the car. My BABY was in the car. My BABY was now crying in the car. I couldn't get up. I couldn't comfort her. Not only was I stuck back on that horrible roller-coaster ride from hell but my heart bled for my baby girl for whom I could do nothing for. Luckily my neighbours heard my cries for help and called Greg and the paramedics.
Since then I have my vertigo attacks pretty much weekly. Sometimes twice in the same day. Sometimes two to three times a week. That last for an hour or so each. That leave me exhausted and sick for the rest of that day and sometimes feeling unwell for another day or two. And that come without any warning. One minute I feel OK. The next I am collapsed on the ground in a world of spin.
I can no longer look after Maya with the same confidence I once had. I can no longer go outside the house on my own. How can I when I have no idea when an attack will strike? What happens if I have an attack while holding her? What happens if we are out on a walk together? I certainly cannot drive anywhere for fear of having an attack in the car and crashing. And some days I am too ill to look after her.
My mother comes over practically every day now. Some days to look after Maya. Some days because I am scared of being on my own with Maya now. Greg also takes days off to look after me and Maya and to drive me to all kinds of appointments. So far nothing is working and I have no idea if/when it ever will get better. I am doing all the same things as I did 7 years ago, that worked back then, but right now there is no change in my condition. So how do I beat this disease this time? I have no idea. My disease has progressed now and it is much worse than it was before. It is a disease I realise that will be with me for life - sometimes in remission, sometimes in action.
Vertigo is such a debilitating, humiliating, vulnerable, uncontrollable, awful position to be in - unable to walk, talk, move and stuck on a ride I cannot get off of for an hour or more. And I cannot stop the attacks from happening. I have no idea what life now has in store for me. Can I go back to work next year as planned? Will I ever be able to have another child? Will I be able to have a normal life again? Will I ever get better? Will my life keep coming back here over and over again?
I have to hope that things will get better and hopefully they will get better soon. But understandly this is an extremely difficult time for me frought with worries, suffering and feeling like I am less than I was. I want to be the active person I was before. I want to be able to leave the house without freaking out that I might start spinning. I want to be able to go to work again. I want to be active in Maya's life - walks, outings, play. I don't want to be a burden on people. I want my life back.
Get me off this ride!
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