What is it actually like to live with chronic migraine? Don't you just hurt every-so-often or something?
Migraine, migraine, migraine. Bore off. Doesn't Kim have anything else to talk about?
Well actually, I do but migraine affects so many aspects of my life that I feel a massive need for awareness and a need to speak out. I hear that "it's not as serious as cancer" or "cancer isn't always cured" or "at least you have all your limbs" (actually it's usually me saying the latter to brush-off my condition). But my Dad had terminal cancer, heart problems, severe diabetes and strokes so I will never, ever, buy that line. It massively offends me. Read why on migraine.com - although the article omits the suicide rates. Here's something on depression and migraine though.
The cancer survival rate is always on the up, and it's no longer a death sentence to have it. Never judge what you don't understand and never talk down someone's illness because if they're suffering, it matters to them.
Chronic migraine is, according to the WHO, the 12th most disabling condition in the world.
I don't think people understand the magnitude of living in the shadow of chronic migraine, or other chronic illness. Or that migraineurs have a suicide rate. We don't look ill, we look for the most part completely normal. There's no cure and few people take notice of the charities funding research fellows desperate to help improve the quality of our lives.
So I've written a pretty average day for me that goes beyond the physical pain of daily migraines that you see when I'm in sunglasses or squinting or covering my head to help raise awareness.
Things I have to think about and things I come across that can make me pretty ill, and I've been careful to not exaggerate anything. This is a pretty accurate example - please consider how you live your daily life in comparison to mine - not for sympathy, but for awareness of chronic migraine that so many of us sadly live with day in, day out.
8am: wake up to alarm (argh, noise). Take some lamotrigine to help keep my TN (trigeminal neuralgia aka suicide disease) at bay. Wake up and think 'am I hurting or am I not hurting?' whilst coming around. I might (this is getting rarer) have a bit of a tearful chat with Mark about how much chronic migraine controls my life and how depressing it is - say for example I plan a very rare night of meeting a friend after work, I won't know if I'll be able to make it until an hour or two before. If it's the weekend and I sleep in for too long, that's also guaranteed to give me a migraine. And if I ever find life too much and cry about it - guess what: migraine trigger always giving me a really throbby painful one.
I always remind myself how lucky I am to still be working whilst I suffer with chronic migraine. Many, so many people have lost jobs or quit jobs or had to medically retire because of chronic migraine and other conditions. It puts people in wheelchairs and makes people end their own lives, and I've read of many that have considered it (not me. I've lost my career to it, but I still have a job which I am very thankful for). Still think it's not a serious illness?
8.10am: Shower. If I'm having a good day I'll wash my hair. If I've woken up with head pain I'll use dry shampoo. I need to conserve energy to get me through the day so usually wear my hair up as it's lower-maintenance. I can't wear my hair up too tight though as it could trigger a migraine, or make my symptoms worse. Sometimes simply brushing my hair hurts, or using hair grips can really hurt too.
8.45am: Feed the piglets! We have two guinea pigs and seeing them on a morning always improves my mood. More on these two later. Did you know that migraine service dogs are a thing? If Mark's kindly made me a wake-up coffee to kickstart my drowsy druggy head, I'll neck it before we leave. Caffeine also makes my medication work faster, I think.
9am: leave for work. If it's sunny, whack on my sunglasses before leaving the house. If it's cold, wrap up - cold wind can make a migraine decide to happen. I used to do a 2-hour commute EACH WAY because I'm not allowed to drive. The commute takes me via an airport where I change buses but people smoke RIGHT OUTSIDE the doors ignoring the signs asking them not to, and I can smell the airside duty-free area from outside the door too. It can give me a migraine on my way to work. Thankfully it's only 20 minutes in the car and if my boyfriend is working from home that day, he'll kindly give me a lift to the office so I have a better chance of a lower-pain day
If I get the bus and feel bad, asking for a seat can result in an argument so I never do it. I'm classed as disabled because of my condition and always give my seat to the infirm and pregnant but I get 'you don't look disabled' which usually hears me reply with 'you don't look like you have a medical degree'. So I'll stand and feel dizzy and sick and hurty whilst someone or their handbag gets to journey in comfort. Don't get me wrong, they could be invisibly ill too but getting defensive about it? Pathetic.
I do my make-up in the car as it gives me extra time in bed on a morning. Turns out I do mascara better at speeds than when stationary and I've learned to adapt my make-up to make my botox (one of my migraine treatments!) look a bit less weird (I don't get to choose where it goes so have flat eyebrows and hidden eyelids).
Sometimes I really cannot summon the energy for effort but somehow masking my face feels like I am masking my condition, it's like wearing a costume to give you confidence to face the day without everyone asking my why I look like complete crap.
9.30am: arrive at work. I start work at 10am (instead of 9am) because my night tablets can make me drowsy and I really need my sleep to recharge my batteries.
Walking through the security gate, every single working day I am met with a terrible smell - probably something I didn't notice pre-migraine. It's the smell of perfume and aftershave coagulating with coffee. Of course it's the morning so everyone has gotten ready, made themselves smell nice, and they are desensitised to it. Unfortunately migraineurs are sensitive to noise and sound so can probably smell it when you're nowhere near.
I work on a lower floor to the entrance, it's only 1 floor down so I although I could take the stairs, I often avoid them. They're spiral stairs so going down them makes me dizzy and disoriented, and the lift is also useful if I'm completely exhausted - after migraine there's a phase called postdrome, which is when your body is exhausted from pain and brain activity, and it makes you really lethargic.
9.35am: take laptop from my locker (we smartdesk) and find a place to sit near my team - they're a lovely bunch but I have to be careful where I sit because of perfume and that kinda thing. Sadly there's only 1 place usually free - if I'm feeling particularly bad I'll go into a quiet booth (if there's even one available) or work from a meeting room. The booths are bright orange and the meeting rooms are lime green so there's no escaping triggers - they can be quite harsh on my eyes so I'll wear my sunglasses. I buy some porridge. Then I head to a morning meeting.
10.30am: return to my working area after meeting. I use an app called Fl.ux on my laptop to add a delicate orange hue to the screen that's less harsh on my eyes, and have the brightness turned right down - so much so that when someone comes to look at my screen they can't even read it at all, but I guess I've gotten used to it.
Sometimes when I have a migraine I can't talk properly, not can I understand what people are saying - so I'm quite quiet at work when not feeling great as that could be really embarrassing. Thankfully this hasn't happened at work yet!
10.35am: coffee! I'm really thankful that coffee isn't a trigger for me - in fact, no food or drink is (yay beer), so I'll treat myself to a coffee from the café. This means queuing with people that could potentially be wearing strong scents, or shouting over the coffee grinder noise. Of course this is nobody's fault so I don't let it get me down. I might get some 'ice picks' which are random painful stabs on the top of my head - sometimes after seeing some funky dots (more on those later) but thankfully they only last a few seconds).
11am: toilet break. The office toilets have really annoyingly strong air fresheners, that sometimes trigger me. I've asked Facilities to remove them, and they did for a bit (in my working area) but then my team moved to another part of the office and I can't be bothered with the faff of asking again.
Midday: lunch. I could eat at 1pm to make my daytime more even (I finish at 6pm) but I'm always hungry at this point and when I don't eat regularly, I get a migraine - guaranteed. I usually eat at my desk and read the news online or check in on the Facebook migraine support groups I'm a member of - this means a) some quiet time whilst everyone else is on their break too, b) also avoiding the main eating area that could trigger something nasty and c) reminds me that I'm not alone with this condition. If something's bothering me I'll get it off my chest in a secret group, or try reassure someone having a bad pain day. It's such a relief having friends that understand - my boyfriend, has much as he tries, won't fully understand my situation because he's not living it. He comes to all my medical appointments and helps whenever he can with other things but without the pain, the motor issues and feeling the stigma, he will never fully get it. Not even episodic migraineurs understand but they can empathise more than most.
12.45pm: I recommence work. Everyone is back at their desks and some people have resprayed their scents in the bathroom to freshen up for the afternoon. Which is a normal thing to do of course, it just means that I'm worrying about the effect it could have on my head. I probably forget what I was doing so spend time remembering, or ask a colleague (again) if my solution idea is correct. They're sick of me repeating my questions I'm sure.
1pm: I start seeing blurry dots whilst going through my emails, and some electric blue pinpricks. My right hand feels a bit weak and I give it a shake to get some life into it. This is what is known as a migraine aura. Some people see dots and lines (visual disturbance), some people go weak, and get tired. Some people have no aura at all and my latest aura kind is seeing things vibrate. Sometimes I get an aura and then no migraine pain following it. It's very weird! Anyway, I now know I can expect a migraine within the next hour...here we go. I have to be prepared for migraine-onset at all times so in my handbag migraine kit I carry 5 different medications, antiseptic wipes, numbing gel, earplus and sunglasses. Right now at work, I have four options:
-I can take 1g (2 x 500mg) paracetamol
-I can take a triptan cocktail (frovatriptan, with naproxen and domperidone) Frovatriptan is from the triptan family of medicines used to stop the onset of a migraine, naproxen is an anti-inflammatory to reduce brain/vessel swelling and can also reduce migraine aura, and domperidone is an anti-sickness medicine)
-I can give myself an injection of sumitriptan - another triptan that's really effective when directly delivered into the bloodstream. It absolutely kills and I have to vanish from my desk for 15-30 minutes as they make me really faint and dizzy - I've had to walk out of meetings to use these then get some very strange looks when I return looking all spaced-out!
-or, I can do nothing. I can wait for it to start hurting, and take nothing to stop it.
Why would I do this? Because I'm only supposed to take a maximum of 10 drugs a month - so 10 of the above combinations, which sucks because I have this occur most days, and sometimes several times a day.
Before I knew this, I used to take 6x500mg paracetamols a day, triptans every day, inject 6 times a month, and think I was doing myself the world of good. However, then I switched to a specific chronic migraine neurologist he informed me that I had medicine-overuse headache (also known as rebound headache) and was risking making my head pain worse as well as having a painkiller addiction.
I was almost hospitalised for it, but instead of being on a load of drips in a noisy hospital ward I weaned myself off them at home. I bet you don't know about this part of migraine life, but sadly most of us sufferers have this problem. I very rarely go home sick (I think I've only done it once - I feel too guilty and its embarrassing packing up my stuff and leaving the office with my tail between my legs).
If I take a triptan or triptan injection I can expect to feel it working within 30 minutes. If I don't take them, I just woman-up and fight through the rest of the day with a pounding head in an office that has fluorescent lighting, perfumed toilets and is open-plan. I'll go outside for some fresh air. I could go use a quiet meeting room or a booth (if any are free) or, as HR advised, use the Multi-faith Room - a stupid idea as I'll be interrupting someone or they'll be interrupting me. But my team are supposed to all sit together so I don't move. I whack my headphones and listen to some classical movie soundtracks or meditation music to distract and calm me.
I'll log my migraine into my Migraine Buddy phone app (which I cannot recommend enough) and leave the log unfinished so when the pain subsides I can see how many hours it lasted. I'll also drink water in case dehydration was the migraine cause, but to be honest absolutely nothing can set them off too. It's a brain problem with no cure and not fully understood. I continue with my work.
2.30pm: my final coffee of the day. In the kitchen area I might see someone I know from another team or department who will ask how I am. I don't make a big deal of my condition and not a lot of my colleagues know about it (I don't want to have to debunk everyone's stereotypes) but if this colleague does, I'll say that I'm doing okay and botox has really helped. Some suggest that I really shouldn't be drinking coffee or have I seen that migraine smoothie, or have I tried accupuncture. Of course, I don't want to make them feel bad for trying to be helpful and caring - so I explain that I have no dietary triggers and yes I've tried no alcohol/no coffee/no cheese/gluten-free/lactose-free/low-gi to be sure of it.
The migraine smoothie image is rubbish and yes I've seen it a million times. And I'm thinking 'do you think I've lived with this condition for 18 months, am having 40 injections in my head every 3 months, and I haven't tried anything?' but of course never say that to anyone because they want to help.
And accupuncture didn't work - but I will always ALWAYS thank them and never shoot them down. They're saying it because they care and want to help me get better, which is really kind of them and makes them a good person. Poo-pooing their efforts is really not a nice thing to do and instead it's my opportunity to raise some awareness. I might explain botox to them. People care and there's nothing wrong with that, even though most folk don't understand there is no cure for this, it's not going away. It should happen more.
3pm: I have the odd afternoon meeting which usually sees me not starting at projectors for long because of their brightness. It also means going past a load of desks to get to the meeting rooms meaning - guess what - perfume triggers and bright lights. Sometimes I'll take my sunglasses, just in case.
Here's a story for you: when I first moved to this office, I'd only been properly diagnosed about 6 months before so was trying all kinds of drug treatments and hadn't had the botox yet. I was in pain pretty much all the time and spend my day squinting, so I thought 'sod it, I don't care what anyone says, they don't have to live in my body' and wore my sunglasses everywhere. They're fun and big and red. A colleague (who understands) told me that one day, someone asked her something like 'who does she think she is, walking around all day in her sunglasses?' meaning me. My friend/colleague replied 'she suffers from really debilitating migraines a lot of the time', and the accuser apologised, feeling bad for not realising or even thinking I had a health condition and wasn't just being dramatic or something.
People can think what they want - I have plenty of other things to worry about - and I'm really glad this colleague of mine put gossip to bed.
4pm: I text my friend and cancel my dinner plans. I'm exhausted and hurting. I feel terrible being so flaky but what can I do? Getting into Central London is a pain - it's stressful (migraine trigger), it's going to be at rush hour (standing on crowded train so no seat, and surrounded with people also going out after work doused in reapplied scents: trigger). I'll also be home around 11pm meaning I will be really tired for the next day so I decide sadly that it's not a good idea. They're understanding and fine with it - wishing me to feel better soon - but I feel terrible for the short notice as they could have made alternative arrangements. I text my boyfriend and let him know I'm not going to see my friend, and ask for a lift home, feeling like a burden to him and my friends. Then I have a word with myself, have a snack, and carry on working.
5.30pm: If I got to work early I'll leave now. If I'm busy I'll stay until 6pm.
6pm: My boyfriend will collect me from work and drive me home. He'll be all excited to see me and tell me about his day - and to hear about mine. But sadly, more often than not he'll look at me and recognise I'm not feeling great, and turn the radio down and we'll drive home in silence. Or, I'll simply be too exhausted and try to explain kindly that I really need some quiet and we can talk a bit later on. It's a horrible thing to have to do and I'm lucky he understands because who wants to work at home all day not seeing anyone, then pick his girlfriend up from work (to save her 2 hours on buses) and then have her tell him that she really can't handle a conversation right now. How is he not supposed to take that to heart?
It makes me feel terrible.
6.30pm: Supermarket. I hope we park near the shop entrance as I'm way to tired to entertain a schlep across the car park. We pop in on the way home to get something for dinner. I usually wear my sunglasses for this and usually let my boyfriend decide on what we'll eat (depending on what kind of pain day I'm having) as I'm so exhausted from work. We'll usually encounter a screamy child/perfume offender/strange looks at my specs but none of these can be helped and we'll make a joke of it.
If it's dark outside when we drive home I'll keep my sunglasses on and look at my knees or something - car headlights really hurt my eyes and can cause head pain.
7pm: we're arriving home. I'll shove my handbag somewhere and collapse on the sofa absolutely worn out. Chronic illness doesn't look like anything but it's not just about actually hurting. It's exhausting, repetitive and gets you down, and when you're feeling low AND feeling very tired, you can feel really sorry for yourself. When you're not in pain you're either recovering from it, or dreading another onset and it's a terrible cycle, made worse knowing you can never leave it.
My boyfriend will cook dinner (I'd never get my head around making a meal after a work day) and he might suggest I 'kill some bast*rds' which is our code for having a go on the Playstation to distract myself and help me relax. If my TN is flaring up it will be a soft meal, ideally soup so I can drink it through a straw. True story.
While he's cooking, I do one of my favourite things EVER - I'll bring our guinea pigs into the living room for fur cuddles and a run around. I find my pets so relaxing to watch and be with - and they're very good listeners. Animals teach us so much without us realising and they are guaranteed to cheer me up - they should be on the NHS!
8pm: dinnertime! Mark is an amazing cook (read his food blog Smokebark here) and I'm super lucky to get something quirky and yummy most evenings.
8.30pm: if I'm up to it, I'll log onto my music website (www.neverenoughnotes.co.uk) and see what my staff are up to/check my emails. I'm not able to do this too often as my priority is to get through my day job, and I'm lucky to have recruited staff to help me run it and write content. When I have more control over my health, I'll get more involved again. If I don't do this, we'll watch a film or I'll read the news or something. I can't go out very often (in fact I never go out on workdays because I am just too exhausted), so I can't go to gigs and see bands/festivals which was one of the key reasons I founded my online magazine. One day I'll get back to that again.
10.30pm: I'll start winding down for bed and always aim for 11pm. I feed the guinea pigs some fresh veg and their silly happy little faces cheers me up again. I'll take my evening meds - dosulepin and more lamotrigine, and a multivitamin. I'll whack in my earplugs for guaranteed sleep. If my TN is playing up I can only sleep on one side of my face, and if I have a migraine I'll read some articles in bed until it eases - I very rarely take a triptan/migraine injection/painkiller when at home as I save them all for work. Pain at evenings or weekends just has to be put up with - even the hospital-sized migraines. I spend most of my time resting to be well enough to go to work but that's the way the cookie crumbles right now. Things WILL improve.
11pm: I close my eyes. I see a kaleidoscope of colour, flashing lights and weird patterns. It's a weird migraine aura and sometimes closing my eyes is brighter and more distracting than having them open. Sigh, guess I'll wake up with a migraine then. Goodnight.
When I don't have a full-on migraine I usually have some kind of low-level head pain and fatigue. Annoying or what!
Please also remember that many chronic migraine sufferers have comorbidities - other conditions too such as chronic fatigue, firomyalgia, diabetes, allergies to migraine medicine, vertigo, and remember that migraine is a spectrum condition including hemiplegic migraines (that mimic strokes) and basilar migraine.
I have chronic migraine with aura (this is classified by 15+ migraines a month but I have at least 20), and trigeminal neuralgia (not normal neuralgia) which you can read about by clicking here. There is no cure for either of them.
And I'm off for a lie-down to give my head a rest now.
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Do you suffer with migraines - chronic or not - or another chronic illness? Or did you read this to understand what it's like? Did you learn anything new by reading this? I look forward to your comments.