My life with Migraine

OK, so this is not an easy post. I'm an optimist, I try to always be happy, and I never like to appear weak or whiny. I don't want people's pity and my troubles are my own, but this has been simmering in my mind for some time now, and I feel it's time to get it out.

Anyone who knows me, knows I suffer from migraines. Let me say that again, it's important you hear it - I SUFFER from migraines. These are chronic, debilitating and severe. I was trying to figure out how to make people understand how bad they are - this is what I came up with - in the last year (365 days), I've probably lost around 100 days (that's a third of my year) to migraines. My attacks average out to 2 days per week. I can go a couple of weeks without an attack, but then I'll get a migraine that puts me out of it for 3-4 days. When I realised how much time I've lost to migraine I was amazed that I've managed to achieve anything! How the hell did I pass my degree (let alone so well) when I lost 1/3 of my time?! And, typically for me, How much more could I achieve if I wasn't suffering from Migraines?!

I'm not sure what my intention is with this post, so bear with me, it may flit around some.

My migraines usually come in one of three delicious flavours:-

1) Migraine without aura (I'll explain aura in a minute)
These lovely migraines are the most frequent. They are characterised by an immense pulsing pain in one side of my head, nausea, light and sound sensitivity. The best way of describing the pain I've come up with is, it's like someone is repeatedly stabbing me with a hot poker inside my head. The pain is usually behind one eye, and stretches out to the temple, the hot poker is usually pushing my eye out of the socket. Every tiny sound is amplified x100, typing on a keyboard can be agony. Even the dimmest light (say from my phone screen) seems so bright it actually hurts my eyes. And the sensations of light and sound cause the pulsing hot poker to increase in strength and speed.
These, horrible as they are, are probably the simplest of my migraines to cope with. I have an excellent selection of painkillers/anti-nausea pills (chronic migraine means my medicine cupboard could rival a pharmacy) which can at least make these symptoms bearable. The downside is I have to be careful, because prolonged use of the painkillers can cause headaches!
I get one of these attacks roughly once a week. They last anywhere from a few hours to a few days.

2) Migraine with pain and aura
This lovely flavour has all the ingredients listed above plus the added tastiness of aura. Migraine aura take many forms, mine usually involve visual disturbance, numbness in my hands, arms, fingers or face, reduced cognitive capacity, and slurring/ difficulty speaking.
So taking visual disturbance first - usually I get light spots in the edges of my vision, kinda like star-bursts. These can be one of the first signs of an impending attack. Then I get a kind of detached feeling, like what I'm seeing is not real, almost like I'm watching it on TV or something. I know it is real, but the sensation from what I'm seeing is that I'm distanced from it.
Numbness - this can also take the form of tingling. I don't usually get the sensation in all of the places I mentioned. When I get an attack it's usually one or two of them. Though I have had attacks where I experienced numbness/ tingling in all of those places.
Speech - it's kinda like when I get drunk, but less fun.
Reduced cognitive capacity - this is a fancy way of saying that it becomes difficult to think. I struggle with attention, find it difficult to focus, and my problem solving skills bottom out. I can barely string a sentence together, never mind work out how to operate the computer. This reduction in my reasoning skills also leads to feelings of panic. I often find myself worrying that I'm going to die during one of these episodes. This is no joke. I know the symptoms for stroke, and my migraine symptoms are so similar I have sought medical advice on more than one occasion. I am generally terrified during one of these attacks, and this feeling of fear stays until the migraine is gone. I often have nightmares when I have migraines, and I wonder if this is why. If my fear manifests even in my sleep.
(God, this post is harder to write than I thought it would be).
When I suffer an attack of this type, I take my pills and go to bed. To my knowledge there is no medication that treats migraine aura, so the pills do nothing to lessen those symptoms. The only thing I can do is sleep. I can't watch TV (the light and sound sensitivity preclude that), I can't read a book (light sensitivity and lack of focus/attention), I can't have a chat with a friend (sound sensitivity and speech disturbance). I am completely incapacitated.
I get one of these attacks roughly once a month. They usually last between a day and week.


3) Migraine aura without pain
The rarest and weirdest of the three flavours. This is when I experience all of the aura symptoms but none of the pain. As I said, I know of no medication to treat these symptoms, so it's off to bed I go.
I get one of these maybe once every few months, they last a few hours to a few days. They also sometimes turn into one of the other flavours, but not always.

When I am recovering from an attack, I get the pleasure of what I've found out is called the "migraine post-drome". During this time, I'm a bit.... foggy. I find it difficult to concentrate and still struggle with simple tasks. My thoughts seem slower and more difficult. This feeling lasts a day or two.

I suppose, I'm writing this post as a kind of catharsis. I've just come out of the post-drome phase of a Migraine with aura attack (preceded by aura without pain) and I'm feeling reflective. I'm also writing it because it's so hard to explain to people what migraine is like. Everyone thinks it's just a bad headache (I've lost count of the times I've wanted to strangle someone when they've told me they get migraines too, and then described a severe headache). And it's hard to prove there's anything wrong with you. Outwardly I look fine, and yet I could be in the most indescribable pain you've ever experienced.

I am on medication to prevent my migraines, and the above frequencies are for when I'm on my meds. Before I started on them, I was getting one form of migraine or another EVERY DAY. I've already had to change medication, because the pills stopped working. And the dosage of my current meds has been increased twice. Once more and it's off to the Neurologist I go.

Like I said, I don't want you to feel sorry for me. Just, next time I tell you I've had a migraine, don't tell me you know what it feels like, don't look at me like I'm lying, or like I'm exaggerating. Just understand that I've just come back from my own personal hell.

P.s if you're interested in the research of migraine, I came across this article over the weekend, it hits the nail on the head when talking about living on the edge. Though I'm not sure I like the "migraine sufferers brain is never normal" comment.

If you're still here with me, thank-you for taking the time to read this post. For me it has helped. I hope it helps you understand migraine a little better.

C
xxx

A few small voices

I used to operate on the assumption that rape is a fairly uncommon occurrence, particularly in the western culture in which I live. Rape is something that happens to other, faceless women. It happens late at night, in dark alleys in the dangerous parts of town, to girls who walk around alone wearing mini-skirts. This is the message my culture taught me. This is the message that girls, as far as I know are still being taught. Rape happens to other people, and it'll only happen to you if you're stupid.

Then I started my degree, and maybe more importantly Gary started his. Gary and I talk about our studies, it seems strange at first, I took psychology and he's doing a degree in Environmental Studies, but there is a large amount overlap. Particularly when Gary covers aspects of human environment. Issues such as displacement, as how resources are used, how communities can be encouraged to act in more sustainable ways. So, what's all this got to do with rape?

Firstly, I remember covering victim blame within my forensic modules, and then becoming interested in sexual violence. I remember reading the statistics on the prevalence of rape in the UK and wanting to be sick. Estimates using the number of rapes reported, and then the percentage of rapes that NEVER get reported, put the figure around 200,000 per year (that's not a typo). The majority of these are acquaintance rapes. The truth is you are more likely to be raped by someone you know. The dark alley, short skirt late at night story is a what is called a "rape myth", and in truth puts quite a lot of blame on the victim.

As a woman and a feminist I got worked up by this new knowledge, and as is often the case I talked to Gary. He smiled, nodded and said "you have no idea". He was right, I didn't. Gary introduced me to the plight of women in African nations, to those living in refugee camps and in war torn countries around the world. And I went from feeling angry, to passionately furious, to feeling powerless.

The BBC last week ran a programme, The worlds most Dangerous place to be a woman. (Do not watch this if you are feint of heart). This programme simultaneously made me cry and feel sick. But unfortunately it's something that I'm becoming all too familiar with. A few months ago I read about the problems in the camps in Haiti. I think for me the worst part of both of these stories is the reaction of the communities and the authorities. The women become stigmatised, ostracised, they have no where to turn. They are raped, brutalised and then thrown away, not just by their attackers but by their own families.

I did, however, still harbour the belief that in the west. In countries like the UK and the US women did not at least suffer this additional abuse. In these countries, women who were raped are treated with sympathy and respect. Then Lara Logan was attacked in Egypt, and well.............................................we are no better.

So this is me, speaking out. Doing the one small thing that I can do, right now. It might not be much, but at if I at least open one other persons eyes. If at least one other person is motivated to do something, to say something. Then at least I played a part.

Rape happens all too frequently. It happens to our friends, our mothers, our sisters. It happens in our back-yard. It happens in other places too, and we should care. We should be angry. We should scream and shout until someone, anyone takes notice. Rape is not an issue for other women, it is an issue for ALL women, the world over. Alone we are small voices, but maybe together, we could be loud enough to be heard.

For Gary

I’m not a patient person. To those who know me this is the understatement of the century! I don’t like to wait, and I most definitely do not like to be told “No”. It’s not that I’m spoiled; it’s just that I see “no” as a challenge. I was raised to never let anyone tell me I couldn’t do something. I was raised to believe that I can do ANYTHING. As long as I work hard. This is usually a good quality, and has helped me to achieve and survive so much. But sometimes, it’s a curse. I don’t know when to hold back, I have a tendency to rush headlong into things, to take on too much. I don’t have a clear understanding of my limits. Because, as far as I’m concerned, I can overcome any limits. Of course this is rubbish, I’m human and I cannot do EVERYTHING, ALL AT ONCE, RIGHT NOW.  But I’m also stubborn......I know a great combination. This makes saying “no” to me difficult. I kick and scream, and cry, and argue, and plead, and sulk, and try anything I can to get around that “no”.

This was highlighted in bright neon recently when Gary said “no”. “No honey, you can’t go straight back into studying. We all need a break, me, Cas and you. We need some time as a family. We need to get the money straight.” I knew he was right. We did need to spend some time together and we did need to sort out money. I needed to find a job. Cassius had missed me terribly the last few months of my degree, when I was locked to the desk studying. I knew he was right, and still I railed against him. I argued, I rationalised, I explained that it would be fine, we could sort everything out and I could still go back to studying. His answer remained the same “No.”

I got angry with him, felt he was being unfair. He knew that I wouldn’t go against him, that I wouldn’t go back to studying without his support. I felt like our relationship was being held to ransom.

Truthfully, though, the reason I didn’t go against him is trust. In the 6 years we have been together he’s NEVER let me down. So despite my frustration I trusted in him, in his judgement and in his love. I knew in my heart that he wasn’t just being mean, that he had valid reasons and that he had my best interests in mind.

Turns out, he was right, waiting was the best thing. I was in such a bad place over the summer. Things had been rough, and I was at the end of my emotional tether. I couldn’t handle any more, and Gaz knew it. He fought against me, against my friends, even against Cassius (who advocated for me often, bless him). Gaz took it all, all the blame, all the anger, all the frustration and with love and patience he told me “no”. And I love him all the more for it. I am in a better place now.

With time off I have pulled back my focus, found my calling again and I’m happy with my chosen path. I’ve had time with my son, which is so, so precious. And I’ve had time for me. I’m ready now, I know it and so does Gaz. In fact, the truth is we’re ready for the next step on our journey. We’re in it together. And for that I am unbelievably grateful. I can’t imagine doing this alone.

The point of this post, the thing I’m trying to get to is this: Thank-you Honey, for saying “no”. For being firm and steadfast, for holding me back when I most needed it and didn’t realise. I know it was hard for you, harder than I can probably understand, and I know that it takes real love to be able to do it. Thank-you for loving me enough to say “no” to me. 

C

xxxx