My Invisible Fight

You may have seen me using the hashtags #invisiblefight and #iiwk15 on social media this week along with a quote or a photo. This is because it’s Invisible Illness Awareness Week. Probably only in America but us Brits get broken bits that you can’t see too so I’ve joined in.

If you have an invisible illness, feel free to take part in this tag, so many people have little or no idea how hard it is to say you’re poorly when you look perfectly fine!

#invisiblefight

30 Things About My Invisible Illness You May Not Know

  1. The illness I live with is:

Current diagnosis: Chronic Vestibular Migraine or, Migraine Associated Vertigo in many parts of the world (MAV for short) possible Fibromyalgia, plus, the associated anxiety and clinical depression that comes along for the ride.

  1. I was diagnosed with it in the year:

2013

  1. But I had symptoms since:

2012 (though a couple for much longer, my first dizzy fall was 1987!)

  1. The biggest adjustment I’ve had to make is:

Not making plans too far ahead. I don’t know from one day to the next if it will be good or bad and I don’t like letting people down.

  1. Most people assume:

I don’t really have a chronic illness if I’m not sick all day, every day.

Also, and I was one before diagnosis, most people still assume migraine is just a bad headache!

  1. The hardest part about mornings are:

Getting out of bed. I’m often feeling dizzy or feeling pain or feeling pins and needles in my feet and legs. Add to that the relentless fatigue and it doesn’t make for a ‘morning person’ 😉

  1. My favourite medical TV show is:

Casualty/Holby – though I’m a social media nightmare if they happen to feature my symptoms!

  1. A gadget I couldn’t live without is:

Iphone/laptop – the internet has become a lifeline for having some sort of ‘social’ life in the evenings. I may be feeling OK but the dark and artificial light are usually migraine triggers so it’s simpler to stay home.

  1. The hardest part about nights are:

As above. And, I’d be lying if I said I didn’t get lonely but who’s going to want to date someone with so much health baggage. It’s one thing if you’re already in a relationship, quite another when you look fine but cancel dates saying you’re too sick to do anything 🙁 Maintaining friendships is near impossible, let alone anything else. Good job I never minded my own company!

  1. Each day I take __ pills & vitamins.

anti-allergy, migraine preventative, joint pain supplement, anti-anxiety (which also aids pins & needles), vitamin supplements…too many, I hate taking tablets, but, they are working a bit so keep doing it!

  1. Regarding alternative treatments I:

Have tried several natural remedies to not much avail; acupuncture which worked a little for back pain but nothing else. Balance physiotherapy has been the most help.

  1. If I had to choose between an invisible illness or visible I would choose:

Probably visible; it’s such hard work and adds to your stress when people just don’t get it. I use a walking stick when I’m not feeling 100%, I haven’t had a fall very often away from home but no-one has ever helped me…I presume they think I’m drunk or on (recreational) drugs! Having said that, on good days it’s nice to pretend it’s not coming back and be ‘normal’! 🙂

  1. Regarding working and career:

I couldn’t hold down a full-time job without significant flexi-time. I work 3 days a week for the family business but more often than not arrive very late as mornings are quite tough especially as I have to wait for dizzy spells/pins & needles etc to pass before I can get dressed or drive. The tinnitus I can live with and for a headache I drive with a migraine patch on – rather naughty but I’ve only been pulled over once!

  1. People would be surprised to know:

When they think I’m not paying attention to them I’m usually either doing balance exercises and trying not to fall over, or, hearing things or seeing things that aren’t there.

  1. The hardest thing to accept about my new reality has been:

Things I used to take for granted have to be thought through very carefully these days. Even something as simple as changing the focus on the camera can send me spinning 🙁

  1. Something I never thought I could do with my illness that I did was:

I try to still do most things that I used do. Definitely less often and to a lesser degree but I try not to miss things out completely.

  1. The commercials about my illness:

I don’t think there are any?

  1. Something I really miss doing since I was diagnosed is:

Seeing live music. I’ve missed so many great shows now but the crowds/lights/noise would be impossible to cope with.

  1. It was really hard to have to give up:

See above – I don’t miss booze as I was hardly a big drinker anyway.

  1. A new hobby I have taken up since my diagnosis is:

Not necessarily new but the colouring-in for grown-ups trend has been a blessing!

  1. If I could have one day of feeling normal again I would:

I am blessed that I do have normal days, for a good while I didn’t which is why I presume the combination of treatments had done me some good.

  1. My illness has taught me:

Live the best life you can every day.

  1. Want to know a secret? One thing people say that gets under my skin is:

When people tell you if you tried this that or the other diet you’d be cured!

  1. But I love it when people:

Accept my plans may have to change at the last minute.

  1. My favourite motto, scripture, quote that gets me through tough times is:

problems quote
26. When someone is diagnosed I’d like to tell them:

Make lists and notes for doctors’ appointments, one thing that seems to be a thread between all invisible illnesses is brain fog.

  1. Something that has surprised me about living with an illness is:

Not caring about answering the door in my pyjamas!

  1. The nicest thing someone did for me when I wasn’t feeling well was:

Not being woken up when I’m recovering from a dizzy migraine or from all-out fatigue and asleep on my desk or a table at work!

  1. I’m involved with Invisible Illness Week because:

So many people just don’t understand that an illness that isn’t obvious can be so debilitating at times; just because a condition isn’t life-threatening doesn’t mean it isn’t life-changing.

  1. The fact that you read this list makes me feel:

Believed. Thank you.

images i believe you images positive negative

 

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3 comments:

  1. I’m a migraine sufferer and have been since a baby. I’m spending today recovering from the last 3 days of a migraine. i function at bare minimum during an episode, can go out, entertain and manage day to day stuff. people say if i have a migraine i should go to bed and sleep, but sleeping is impossible as every sound, bit of light is magnified and intensifies the pain. I get angry when i have an episode, i search for and eat sweet foods and drink coke and coffee, to which people say i can’t be ill pif i’m doing that. In the days leading up and during a migraine my brain and action and speech don’t match up, my movements are slow and i struggle to get words out, after a migraine I am very active, again people think I should be resting and therefore can’t have been that ill.
    Until 2 years ago I was hospitalised with migraines as they presented similar to meningitis and had to have numerous lumbar punctures and spent between1 night and 2 weeks in hospital.
    20 years ago I was injured in an assault and have permanent, invisible, nerve damage radiating from my neck, it affects my fine motor movements, writing, opening a tin and often I will just drop a cup for no apparent reason. Because I can drive a car long distances, swim, cycle, walk for miles and move heavy items people assume I’m not suffering daily and have learnt that if i want to do something that involves using my fine motor skills, that i am going to suffer with a migraine/headache afterwards, so colouring is out for me.
    I started seeing a bio who worked on my whole posture and lifestyle, since then I’ve only had 3-4 migraines and I’ve been able to manage them without medication, but it has also helped I now longer have kids at home so i can switch into migraine mode at my choosing rather than having to keep struggling on.
    I’ve often thought over the years I would be better with a broken arm, something that people can see and have patience with.
    chickenruby recently posted…Week 40 – Project 365My Profile

    1. Goodness, I’m so grateful to have only had them this last few years. Yours sound awfully severe, I’m pleased you’ve found a way to ease them a bit. You’re right though it must seem to some people utterly ridiculous than I can hardly move one day because the dizziness and migraine disturbances are so bad but the next day I can happily re-arrange a room and move all the furniture single-handed!

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