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Wonder Crush Wednesday is a weekly post by yours truly where I choose to discuss the wonders of diversity. We all have Superman and/or Superwoman within us. The right representation is needed to make sure that everyone knows that. These posts aim to highlight diversity in both literature and other aspects of life. Feel free to adapt this on your blog too!

#DisabilityDiaries2017 is an event created and hosted by ElyAngel, Cee Arr, Dina, Jolien, and Lara between 14/1 and 21/1. Unfortunately, I’ve found out about this quite late but I’m so happy to have found it nevertheless. It is a great initiative that aims to start a discussion on disability within the book community, which I think is superb.

The coming few Wednesdays I would like to write about personal accounts of disabilities in me and close family members. I hope that this offers some insight into various disabilities and normalises the word, hopefully we can all destigmatise the term.

Hello, my name is Yasmin and I have hemiplegic migraines associated with sleep disturbances and hormonal changes (basically, when I get my period). There’s not a lot of information about it but let me explain how and why I refer to it as a partial disability.

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Hemiplegic migraine is referred to as a β€œmigraine variant”. The word hemiplegic simply means paralysis on one side of the body. A person with hemiplegic migraine will experience a temporary weakness on one side of their body as part of their migraine attack. This can involve the face, arm or leg and be accompanied by numbness, or pins and needles. The person may experience speech difficulties, vision problems or confusion. This can be a frightening experience for the individual as these symptoms are similar to those of a stroke. This weakness may last from one hour to several days, but usually it goes within 24 hours. The head pain associated with migraine typically follows the weakness, but the headache may precede it or be absent.

My symptoms start out four days before the actual attack with two days of mild headaches. Then, I’m fooled with two headache-free days where the only symptom I have is a bit of nausea and the experience of deja vu without the actual deja vu… This becomes more intense as I near the attack. This is referred to as an aura that most people with any type of migraine might experience. It’s very hard to describe since the experience varies between patients and the phenomenon is not quantifiable.

It is a scary thing to experience because the first thing I feel is pain in my shoulder and arm, extreme dizziness, and a sense of falling. The feeling comes about from the weakness on my left side which is accompanied with speech difficulties and, when it’s really bad, uncontrollable tremors.

To any medic and doctor it looks like a stroke so I’ve done more CTs and MRIs than necessary and they’ve all come out perfectly fine. My blood tests are always within the reference range, since I’m otherwise healthy. It occurs once or twice a year (three times last year) and it usually lasts up to 24 hours. Every attack is different, sometimes I will only experience weakness in my arm and other times I have to be carried around like a rag doll.

The main symptom is of course hemiplegia which is:

a condition with varying degree of weakness, stiffness, and lack of control in the affected side of the body.

This is how it looks like:

This is how it feels like:

giphy.gif

Now, about the “partial disability”. This condition isn’t something that I suffer with daily, during the attack (and before and after) I am disabled from using any vehicles or being alone. The attack can strike at any minute and there have been instances where I have fallen on the street and hit my head. But, apart from that, I am pretty much able bodied (wellll, except from the chronic pain in my knee and insomnia but that’s for another time).

This is a personal preference because I feel like it takes away from people with more permanent disabilities that affect their daily lives. Even people with hemiplegic migraines that suffer way more than I do and that are completely debilitated by this migraine variant.

I feel especially strongly to identify as partially disabled since I am a medical student and I work in the ER. We meet people with chronic disabilities every day and it feels like an insult to them to compare our struggles in any way. Of course, this is a very personal account and anyone with a real diagnosis may identify however they might like.

This is a very rare condition and I hope you’ve learned a little bit about it. Please feel free to comment your own thoughts and feelings!

One tip, if you do know someone with this, please don’t be scared of them. I remember being in hospital and my friends being scared of coming near me. That made me very agitated which I couldn’t communicate. My brain is still very much functioning and I understand everything going on around me. If you can’t handle it, please leave the room.

More links on hemiplegic migraines:

1, 2

More interesting links on disabilities in literature:

Harry Potter and PTSD

Percy Jackson and dyslexia and ADHD

Six of Crows and disability

The Trope of Curing Disabilities


For more of what I’ve read this year you can follow me on Twitter, Goodreads, and Tumblr. Make sure to check out this twitter thread of books I have read in the past year in gifs.

 

 

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12 thoughts on “Wonder Crush Wednesday: Disability Diaries part 1

  1. Thanks so much for writing such a thoughtful and insightful post, and for joining in with Disability Diaries 2017!
    I have episodic migraines but had never heard of hemiplegic migraines – thanks for the info!
    Feel free to not answer if this is too personal, but do you get the enhanced senses like photosensitivity too? Even when I’m not having a migraine, I retain a slightly lower level of the photosensitivity, so I tend to put the brightness down quite low on my laptop and other screens, and sometimes I’ll wear sunglasses inside (if I’m having a migraine, I definitely wear sunglasses!)

    Liked by 1 person

    1. Thanks for the reply!! My uncle has episodic migraines too.. And my grandma has late onset migraines, that means she got her migraines after menopause. So we have sporadical migraines in the family… 😭😭😭 And yeh I definitely experience photosensitivity! I haven’t been diagnosed for very long so I wasn’t able to connect the dots but last time the paramedics put me in a blindfold because of how extremely awful I was feeling.. and my brightness is always on low because I generally am photosensitive because of my insomnia

      Liked by 1 person

      1. I went through a multi-episode event when I was a teenager, where my migraines were the trigger for the next migraine (I don’t recommend it!) I had to stay off school for like a month because I just couldn’t do anything and when I got back all the teachers and a bunch of my classmates were acting really weird – like I just did for attention, because it’s ‘just’ headaches *sighs* So even though I’m only disabled as such during an attack, I think it’s important that we do treat it as a form of disability, because otherwise people treat you like you’re ‘not ill enough’ to warrant not being able to do things.

        They do tend to run in families – my cousin gets migraine attacks, and my auntie has had one or two. My grandmother used to get a few also. Scientifically speaking, not a lot is known about them – but they are a neurological condition, not just a headache.

        Liked by 1 person

      2. I never thought of that bit, “just headaches” and “not ill enough” oh if I haven’t heard that from my professors.. I am in medical school and my teacher had the NERVE to tell me that I should still be able to attend obligatory classes when I’m having an episode… Because she has migraines too and is still able to do her obligatory work with the right painkillers.. and I was like ok fine props to you, that must be awful that you force yourself to do that, but I am literally paralysed in one half of my body.. (and I’m hospitalised wtf) Sorry for the rant but I just realised how valid your comment is… going to add it to the post! Thanks for your comment!! 😊😊

        Liked by 1 person

  2. Thank you so much for joining disability diaries and writing this amazing post. I too suffer from migraines, however not as horribles as you. I just get very regular migraines – at least once a week. So I understand on that part. I cannot image what you and others like you go through.

    Thank you for such an insightful post.

    Liked by 1 person

    1. Ah thank you! I’m so excited about this initiative and all credit is due to the creators!! This is such an important part of diversity in literature that is sometimes misrepresented or dismissed.. Thank you for your lovely comment!

      Like

  3. Thank you so much for sharing, I’d never heard of this before and I now know a lot more about hemiplegic migraines. I don’t know much about migraines other than the fact that when my mum gets them the light makes them worse, I’m definitely going to do a lot more research into the different kinds of migraines.
    I can’t begin to imagine what its like to live with this disability and I’m not ever going to pretened that I do.
    Thank you for sharing πŸ’•
    – Yasmin

    Liked by 1 person

    1. Thank you for your wonderful comment!! I’m sorry to hear about your mum, yeah photosensitivity(being sensitive to light) is one of the main symptoms. Oh! I read this great study that the colour green tones down the intensity of the migraines so tell your mom to wear green and have green covers or be in a room with green walls when she is having an episode! It actually helps me a bit..

      Liked by 1 person

  4. Thank you so much for participating in Disability Diaries, and especially for writing this post! I have to confess I had never heard of hemiplegic migraines before, and your post has taught me so much. I have never head a migraine, only severe headaches when I get my period. I already hate those, so I can’t even imagine having migraine attacks often. I have one question for you, though. If I see someone fall down on the street or so like you described, what is the best way to help? I don’t want to overcrowd someone or be too overbearing, but in any case I’d like to be prepared to know what to do in case it ever happens around me.

    Such an incredible post, thank you so much!

    Liked by 1 person

    1. Ah thank you for your comment! πŸ’ž To your question; of course it depends from person to person but the two times that it happened to me I remember just needing someone to call an ambulance and wait with me. People kept asking if I wanted water and stuff and that just increased my headache. Don’t try to fill the silence, basically. But most people that collapse don’t have hemiplegic migraines, it’s usually a stroke or heart attack and in those cases you need to keep them conscious and be prepared to do cpr. Something to remember about cpr: you don’t need to do mouth to mouth! Studies have shown that it has very little effect and that just doing compressions is fine. And do it to the beat of “Staying alive” πŸ˜‹

      Liked by 1 person

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