Not Drunk, Just Dizzy

Sydney woman living with vestibular migraine. I'm not drunk I can't walk straight because my dodgy brain and ears don't work so well.

[notdrunkjustdizzy]

The pros & cons of being dizzy: a response

A few weeks ago I came across the excellent blog of Dizzy Girl Writes, a fellow vestibular migraine sufferer. Her latest post is about the pros and cons of being dizzy. This is something I think about a lot and I originally tried to write a comment on her site. Buuut then I remembered this long neglected blog and thought I really should post it here. So, if there’s anybody still reading, a big apology for my long absence. And here are my thoughts on the idea of there being pros and cons to being dizzy...

The pros and cons of being dizzy are complicated? I’ve read memoirs of people with serious illnesses who talk about being “grateful” for their health problem. Which I really admire in some ways. But I’ve never felt one single iota of bloody gratitude for being dizzy. I would like it to just GO and never, never, never come back.

And yet I also have to admit that good things have come from it. It forced me to recognise that I wasn’t happy in my previous career and it made me stop. I was forced into that recognition kicking and screaming, but it was still a good thing to have happened. I would probably not be studying now if it wasn’t for the dizziness. And the studying, whilst hard and, at times, stressful, is also a joy. It’s a bloody brilliant, marvellous, enriching and wonderful thing.

I also am now more mindful of the small stuff around me. I *see* the changes in my garden and the birds flying overhead. I am aware of the flowers blooming in the gardens around me. I stop every day to smell my neighbour’s magnificent rosemary patch. I notice the gentle kindness of the waitresses at the cafe. Things that would have blurred past me in the rush of my previous life.

Image by David Boozer

Which maybe means I should be grateful?

And yet, I also feel like it wasn’t my dizziness that made those changes. I did. It was me. Through hard work, lots of self-work, maintaining a long-term perspective, not falling into too much of a funk. And goddamit that was hard, hard, hard work. But I DID THAT. Not my dizziness. And I don't feel like being grateful to it. If my dizziness wants gratitude, then it can rack off.

Which shows you how much, at times, I anthropomorphise my dizziness and also gives an insight into the complexity of my feelings towards it.

But it is good to recognise there are pros and cons. Important even. However complex.

[notdrunkjustdizzy]

A Rip Van Winkle Day

I had a Rip Van Winkle day yesterday.

On one of these days I spend 14 - 15 of the 24 hours available, fast asleep. I'll get up in the morning and then need a sleep a couple of hours later. By mid afternoon I'm shattered again, requiring another sleep just to get through the day. In the evening I crawl into bed about 8.00pm, desperate for more sleep.

I'm tired a lot of the time. It seems to go hand-in-hand with being dizzy, when even simple tasks, like walking and standing up straight, require a degree of concentration and focus, which just takes it out of me.

However, on a Rip Van Winkle day, this feeling is significantly heightened. I'm not sure why these days happen, whether they're a sign I've been doing too much or just one of the vagaries of my condition, but on a Rip Van Winkle day I cannot do anything but give in to the overwhelming need for sleep.

Photo by Jared Wong.

[sicelybaquedano]

I am madly in love with humans. Especially the strange ones. For it is ever so beautiful to be strange. To do things differently than others. To see things in a rare light. To me, that is such gold to carry.

CHRISTOPHER POINDEXTER, Remington Typewriter Poetry christopherpoindexter (via sicelybaquedano)

[notdrunkjustdizzy]

Letting go of stuff & needing to be less busy

Over the last week, at the back of my head, has been the thought I'm doing too much. There's been too much in my head, too many scribbled reminder notes and I've been feeling scattered - pulled in multiple directions, struggling to stay focused.

Then after four solid, good, good weeks, where the improvement in my health has felt miraculous, I've had two bad days.

Could be coincidence. Could be because I haven't been as diligent with taking my B2 tablets. But it's also renewed my thoughts - I need to give up some of the things I'm doing.

I have no idea what to give up. No idea at all. At the moment everything I'm doing seems necessary, stuff I either need or want to do. Plus it feels as though I've given up a lot in the last 18 months, so part of me is also saying "more? really?" and feeling pissed off and resentful.

And then Michael Nobbs pointed to this blog post. Sometimes the right post at the right time can clarify things, make the thought simpler in your  head. In particular the post starts with this quote:

"Unless you are prepared to give up something valuable you will never be able to truly change at all, because you’ll be forever in the control of things you can’t give up." - Andy Law

Which reminded me, my life is better because of the simplifying I've done over the 18 months. Letting go of more activities, ideas, "needs", has the potential to make it better again. Plus if it stabilises my health and gets rid of the hurried feeling, it'll be worth it.

I still don't know what I'm going to give up, but I feel calmer and more comfortable with the idea that I need to.

[notdrunkjustdizzy]

Getting stuff done, one task at a time.

In amongst all the migraine stuff, a sense of progress, of being productive and getting on with my plans and dreams, helps. But sometimes it feels energy and non-dizzy headspace are in such short supply I get nothing done.

A few weeks back, on Michael Nobbs' excellent Sustainably Creative micro-podcast, he talked about writing down the one core thing you were planning to do that day. Doing this on a daily basis sets up your intention for the day and also provides "a permanent record of yet one more thing achieved".

This struck a chord with me, so I started writing my daily tasks on post-it notes and sticking them up on the wall once completed.

The picture above is everything I got done in the last 3 weeks of October. Which feels like a huge achievement.

Look at all that stuff!

[notdrunkjustdizzy]

The bad weeks

I've had a run of good days - five in the last week and a half. It's been quite wonderful: I've had some energy, been out in the world, felt motivated, been for walks, caught up with friends, got some stuff done, made some plans, read a wonderful book,

It's been a while since I've had a few good days. Since June. The recent relentlessness of the bad days has felt overwhelming. The longer they went on, the harder they became. In the middle of all the bad days it felt really hard to write about the bad days. About what they felt like, what I do, how I am. It was easier to not think, not see people. Shut myself at home.

I've talked about a good week, well in a bad week:

I'll often be housebound for much of the day, too unstable and confused to leave the house without my partner to guide me.

I'll still aim to get a small chunk of something done each day - 20 minutes of work; a load of washing; a little bit of tidying up; washing and blanching some greens for a spinach pie. Getting just one thing done helps my mental state enormously.

I'll spend a LOT of time watching TV. Reading is often too difficult - I can't concentrate and sometimes I can't even focus on the words on the page. Whereas TV watching is easy.

The dizziness will come on early in the morning and stay for much of the day. And with the bad week dizziness comes headaches, nausea, an inability to concentrate and confusion.

Almost always the dizziness will clear in the early evening and I'll have some relief, maybe even get out of the house. At the very least I'll be able to spend some time sitting in the garden, with a glass of wine, talking to R.

I'll move slowly and have to hold onto things as I potter about the house.

I find it hard to hold a conversation. I forget words; forget the point of what I'm saying; my sentences trail away; I speak too softly and give up on sentence half way through.

I'll sleep for 1 hour in the morning, 2 hours in the afternoon, get 8 hours at night and still feel shattered

It'll be harder to remain positive. I'll feel cut off from the world, without the energy or enthusiasm to do anything about it.

At times, I will be able to see the funny side of my situation. R makes me laugh, particularly when I'm veering all over the place.

[notdrunkjustdizzy]

Self-Care Fatigue

About a month ago I had a bad case of self-care fatigue. The two weeks prior had not been good weeks, full of dizziness and exhaustion, plus I had a cold and a mild case of gastro, and it all became a bit too much.

A lot of the management and rehab for VM involves doing the very things that make you dizzy. The purpose being to re-train your brain, so it doesn't respond with dizziness. Over time this should make you less dizzy and more able to live a normal life. I've had lots of success with this strategy and know that it works.

But sometimes I just get worn out by it. Tired of having to do the very things that make me dizzy. Tired of feeling rubbish and being unwell. Tired of having to look after myself. And really, really tired of being tired.

During these periods I can't summon the motivation for self-care. It all feels too hard and too unfair.

This has happened before and I knew it would pass, but a few thoughts and approaches helped me through my self-care fatigue:

Giving in is not giving up: Just at the right time I listened to this podcast which reminded me that sometimes the right solution is to stop trying so hard and give in to how I feel.

Enlist help with self-care: There's a tremendous comfort sometimes in putting your health in someone else's hands. Instead of managing everything by yourself, there's a relief in seeking out someone else's opinion and a simplicity in getting someone else to tell you what to do.

Do one small act of self-care each day: No matter how bad the self-care fatigue, I still try to do one small thing each day to take care of myself. It doesn't matter how small it is and it may not feel like much in itself, but as the days progress it helps.

So during my self-care fatigue I stopped trying to work and push on and instead spent a lot of time on the couch, sleeping and watching cycling. When I could focus, I read this wonderful book and on the sunny days I sat in the garden. I tried to get showered and dressed each day and eat properly, but I also tried not to beat myself up if even those things became too hard.

Plus I went to see my lovely, sensible GP to talk about medication and a referral and I had my first appointment with a neurophysiotherapist, to see if that speciality can help in any way.

[notdrunkjustdizzy]

So, how are you?

At the moment I find answering the question 'how are you?' quite tricky. It is, of course, something I get asked a lot. It's something everybody gets asked a lot, but when you have a chronic health issue, it takes on an extra meaning - the question is no longer just a nicety. Mostly, the question leaves me floundering. Trying to give a short, meaningful explanation, while actually answering in waffle and contradictions, conscious I am rarely able to explain how I really am. Anyway, a friend I hadn't spoken to for a while asked me the question last week by email and this is the closest and best answer I've given in a while.

Taking a break has been good in many respects and definitely the right thing to do, but it hasn't meant a return to full health as I had hoped. While I am a lot better than I was this time last year and even at the beginning of this year, I am still getting daily bouts of dizziness and confusion, which leave me exhausted. Life has changed quite considerably and become, I guess, much smaller. I have resigned from clinic, let go many of my writing jobs, given up my driving license, been forced to slow right down. But, while life is different, it's not all bad. It's taken me a while, however I am coming to a degree of acceptance of this change. I've stopped fighting my health and being angry about it, and am trying to see the slower pace as a good thing - giving me time to see, appreciate, admire and smell the roses. It's also leading, I think, to some deeper changes in myself, my relationships and friendships. I am at present, still somewhat baffled about what to do about work, my blog and all those things I worked at pre-dizziness. I have been getting few drips of work, the money from which is keeping the wolves from the door, but my ability to work is very inconsistent. In a good week I'll get about 12 hours done, but then a bad week can lead to my being couch bound, unable to think and not able to string a coherent sentence together in person, let alone on paper! So we shall see.

Not short, not succinct and pithy, but the best attempt at answering the question I've managed in a while.

[notdrunkjustdizzy]

In a Good Week I'll . . .

see the funny side of my symptoms

get out the house a few times each day

get about 12 - 15 hours of work done

only need a 45 minute sleep in the afternoon

be able to exercise

come up with ideas and schemes for the future

catch up with friends, in person and by email

be enthusiastic

spend time in my garden

read the newspaper

feel engaged with the world

be concerned for others

cook an interesting meal

read a book

have optimism for the future

feel energised, even just for a couple of hours

see the positives of taking life more slowly, not rushing and having time to appreciate and admire the world

feel a peace with my current life and limitations

be a good friend and partner

[notdrunkjustdizzy]

Veering

So I'm having a veering day today. No matter how much I concentrate I can't quite walk in a straight line: I veer off course. Today I'm veering to the right, it's usually one way or the other.

I used to get really upset about veering. I felt out of control, it made me anxious, it felt wrong. Like I was faulty in some way.

I've never fallen over and the veering has never been so out of control that I've been un-safe. I'm always able to correct my trajectory, before I swerve out onto the road.

Plus my partner makes me laugh about it and it's hard to be anxious about a symptom which makes you laugh. So now, even when he's not around, I find the veering mildly amusing.

However it does wear me out. On veering days, I'm always tired. Walking, something we usually do without a thought, takes concentration and attention. Correcting my course and staying on track takes energy.

It's been one of the astonishing things about having VM - how much work can be involved in seemingly simple, everyday tasks. When your balance system is dodgy, there are some days when walking, standing up straight, even sitting still in a chair, take effort and concentration. All these things we take for granted, which are easy, until there's a problem.

[notdrunkjustdizzy]

What's it all about?

I have vestibular migraine. It's a type of migraine, which, instead of causing headaches, causes dizziness. Well, some people do get headaches as well, but the defining characteristic of vestibular migraine is dizziness.

Other symptoms include vertigo, sound and light sensitivity, motion sickness, balance problems, difficulty concentrating and so on.

I've had VM for about a year now and it's been a difficult year. Along with the dizziness comes a whole lot of other stuff. I've had bouts of dizziness every day. On a good day it'll last a few hours and be quite mild. On a bad day, it can feel like the dizziness is filling my head, so that nothing else exists there. I can't think, form a sentence, make a decision or leave the couch. This can last for hours.

Fortunately, I don't have so many of those bad days now.

And when you're feeling dizzy all the time, the normal every day stuff of life feels hard. Too hard. It became too much of a hassle to go shopping, because it sets off the dizziness. I had to stop working, because I wasn't coping with work. My social life reduced. I stopped exercising. In trying to keep myself safe and avoid being dizzy, my life reduced and contracted. It became smaller. Safer, yes, but also more boring, I felt useless, a failure, not good for anything. It didn't feel like much of a life at all.

But now I'm improving. I've learnt some strategies, made some changes to the way I think and behave. Life is looking better.

Part of the way I make sense of my world is through writing. In the process of getting an idea onto the screen I have to work through my thoughts; decide what I really think; and put my emotions and feelings into words. For a long time I haven't felt like doing this. Thinking, let alone writing, was too hard.

As I've improved though, I've felt the need to write come back - hence this blog.