It’s National Balance Week this week, a week started by VeDA (Vestibular Disorders Association) to raise awareness of the issues those of us who have balance problems contend with. It covers a range of disorders from Meniere’s disease, vertigo and people like me who have bilateral vestibular failure.
It’s often a difficult concept to understand when someone says they have no balance. With me it means my ears do nothing towards my balance, so I only have my leg muscles and vision to help me stay upright. My brain also doesn’t compensate for head movements, so as I walk my field of vision wobbles, even sat still things are rarely still. This also means it’s difficult to recognise people or read signs when I’m walking as I can’t focus on a moving object. A couple of years ago I made a short video of life through my eyes, it’s on Youtube if you want to watch, only a couple of minutes long.
Having been like this for about 15 years, I’ve learnt to cope and I know my limitations, I’m best in a well lit, level environment, if I lose my visual cues from being in the dark (or bright sunlight even) or if the ground is uneven or soft, I’m a lot more likely to fall – I’m pretty good at falling, touch wood so far I’ve not hurt myself!
I find it easier if I have a third point of contact when I’m walking round anywhere that’s uneven, going down steps I always use the hand rail, round the garden I have strategically placed metal poles which I call my wobble sticks, just something to hold onto when I’m in the middle of a flower bed…
If I’m walking on the fells I always use two walking poles and my walking friend is well tuned in to what will cause me issues, we have quite a good routine now, if it’s a tricky accent she goes behind just to make sure I don’t topple backwards, if it’s a tricky descent she goes in front, not to stop my fall but because I find it easier with just a short distance to concentrate on. Sometimes just having a steep drop next to the path is enough to give me collywobbles, even if the path it’self is OK, it’s that thought of what if I wobble now!
The last couple of years has been a steep learning curve as I discovered the effects on the rest of my body of my coping mechanisms. If you’re more likely to fall over if you move your head, you avoid moving your head, if your vision bounces as you walk, you try and walk more smoothly, which is from the hips, not the abdominal muscles. Unfortunately this resulted in my neck losing it’s movement range, my whole spine stiffening up and my pelvis becoming tilted as my leg muscles tightened in all the wrong places…which then affected my knees! Lots of physio and pilates from Sue at Flexible Healing here in Otley and Wesley at the Valley Clinic in Ilkley and I’m moving much better, with just the side effect of falling down more! My physio looked somewhat shocked when I said I must be moving better as I’m falling over more 🙂
Lack of balance is another one of those invisible disabilities, there’s nothing to alert others that you have issues. So if you see me walking in a wobbly line at 11o’clock in the morning, I’m unlikely to be tipsy, so I really don’t appreciate someone shouting at me ‘can’t you walk in a straight line’ as has happened a couple of times recently. One day someone is going to catch me on a bad day and I might just lose it!
There’s much worse things to have go wrong than balance, it’s manageable…and it doesn’t stop me sewing! This week is just about raising awareness about the problems the go with having a balance problem.
thecraftycreek 
Oh my goodness – I had no idea that you have this daily challenge Margaret. You achieve so much!
I have not heard of your condition before, so I am glad to know about it. I had labyrinthitis once which was horrid, I imagine there must be similarities.
You must be very self-controlled not to respond to such ignorant comments.
Thank you for this post and raising my awareness.
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Much sympathy here… My father had Menière’s for 30 years and I watch the flare ups lay him low, I’ve had a viral infection that has affected the nerves in my left inner ear, and chemotherapy has left me with extensive numb patches on both feet so that I’m never entirely sure my foot is flat on the ground. I have only a tiny inkling of how your life has been impacted, but even that is enough to make me feel for you. Stay safe. And next time you get a stupid comment like that, try something like: “No. I have an inner ear disorder. Luckily I can hide it most of the time, unlike your terrible case of the Stupids!”
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The video gave me a much better understanding of your condition, Margaret. It must be so tiring having to be constantly conscious of how you move. I have always admired the walks you do, and love reading about them; now I will read them with more insight.
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Margaret, it’s so nice to actually find someone who has the same issues as myself, as I’ve said to you before. And yes, you are so right. Trying to explain to folk is almost impossible and many don’t understand. I always say to any who might be interested – ‘Spin round and round like you did as a child and then try and walk.’ Not sure they get it even then. My family tho’ are wonderful. They get it.
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I have had Meniere’s for 25 years. If I am a good girl and do not eat salty things or a lot of sugar, I am OK. I stay on a very limited diet and do not eat out. As I get older, the weather changes – barometric pressure up and down really can bring on an attack. I could not watch your video (tried) but it would make me dizzy. I do hope that you can have a better week. Will be thinking of you. Hugs
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Gosh, that’s like a visual tinnitus! I have Vertigo a couple of times a year and that’s weird when the head moves and then the eyes catch up several times like a 1970’s pop video. At least I can, usually, sort that relatively quickly. Thank you for sharing.
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That is amazing you go on all those amazing walks, etc.
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I get full blown vertigo occasionally but, more regularly, find laying down flat and turning my head – in Pilates for instance – is impossible unless I prop my head up on a cushion or something. Dizziness – generally accompanied by nausea I expect – must be hideous to experience on a constant basis and I’m in awe of how you’ve adapted and still do the things you love to do such as your long walks,
I must confess that I never used to think about invisible disabilities but I do now and try to spread the word.
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Getting dizzy when you turn your head lying down might be worth getting checked out, there’s a movement the doctors can do to clear any ‘debris’ in the inner ear and it sounds similar. I’m lucky in that I don’t get any nausea, it also means I don’t get seasick as that is my world!
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Yes, I think it might be something to do with ‘crystals’ which everyone has in their ears but sometimes go a bit skewiff. I have tried doing the particular exercise I think you’re talking about and I went cold, clammy, even more dizzy and was sick and spent the rest of the day in bed . A case of the cure being worse than the disease Unless it really starts to incapacitate me I think I’ll put up with it.
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Probably very wise, the consultant tried it with me and it made no difference at all.
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I salute you for walking the Fells with this invisible disability, and for how you manage it in the rest of your life. It can’t be easy
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My thoughts are with you. Seems to be quite a common problem as so many I know suffer so sort of balance issue. We truly need to educate and be more aware of those around us. This was a great informative post 🙂
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I will just ditto what has already been written in the comments. I’m amazed at your long walks and gardening, and in the future, I will read these posts with even more interest. And all the detailed stitching you do! Thank you so much for raising awareness of this condition.
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