Thursday, 24 October 2013

What do you DO all day? Questions for a Chronic Migraineur

"What do you do all day?"

"I wish I had all that time to myself."

"It must be lovely not getting up to an alarm clock!"

"Yes, but what do you actually do during the days?"


In the throes of Chronic Migraine and buggered up neck land, I couldn't work full time. I couldn't really work part time. This seemed to confound my friends and other innocent bystanders. They simply could not understand what I did with my long, long days of slumber. Many suggested hobbies from yoga to baking.

I, always politely, replied that if I was well enough - if I could -  I would love to laze around all day learning yoga and getting my baking up to Mary Berry standards. Alas, I would gently repeat, I have a chronic pain condition that prevents me from even doing yoga. "Yes but...." would always come the helpful response.

So, let me lay out a typical day for someone in the throws of Chronic/Daily Migraine or even any continuos pain condition. First, to be totally honest, it's all a bit of a blur. Secondly, people always forget (I'm including myself in this) how utterly exhausting pain is. Remember this and read on....

Day 1:

4/5am - Woken by deep stabbing in skull. It's like needing to pee in the night. You know you have to get up and do something - but you were enjoying sleeping. Get out of bed, start 'migraine protocol' of either injections, nasal sprays, possibly pain killers. While you're up (if you can actually stand) might as well get hot water bottle and ice pack. Re-position pillows that seem designed to provide no comfort or support at all. Turn on audiobook to distract you from pain.

7am - Alarm goes off. Every Doctor/Physio/Parent tells you that regular sleep patterns are key to managing such conditions. However, you've only just, about 10 minutes ago, managed to drift back to sleep. You attempt to sit up, wanting to maintain good sleep hygiene, you panic that disrupted sleep is a trigger for you. How will you get to sleep tonight if you sleep-in now! But even the act of sitting up makes you feel shaky and it's possible you might vom on the cat that is asleep on your feet. Return to horizontal.



9am - If the medication has had desired effect you will be able to drag yourself to the kitchen. You must eat to maintain stable blood sugar levels after all. You feel like a truck ran you over in the night. The effort of getting to the kitchen and eating is exhausting. Return to bed.

11am - Nope. Bugger. The medication hasn't really worked, it was just a brief respite, the stabbing pain and general body ache is back. You know this is going to be a 2-3 day affair. You will swim in and out of consciousness throughout the days. The main aim now, ironically, is to sleep. If you're lucky a parent/friend will bring food parcels at regular intervals. When you can focus enough to eat, you spend about 15 minutes contemplating the teeny tiny size and texture of rice grains. Isn't it a miracle? Such fascinating thoughts take up much brain space during this period.



2 - 3 days later:

Slowly emerge into the world. Today you feel capable of showering and wearing non sleep attire. But you are now in the full throes of migraine hangover, i.e feel battered and bruised, probably tearful and just want to go back to bed and recover. But you've been in bed for the best part of 3 days so you want to check that the world is still there. Plus, you have Physio, Consultant and GP appointments that you can no longer delay.

You bravely arrange to meet a friend for coffee. Coffee? Brave? Keep reading. The effort involved in physically getting to the meeting location will be almighty. But you will appear, to all intense and purposes, to look just dandy; a bit crumpled around the edges but no one would guess you hadn't spent the week baking and learning yoga.  You will have had a power nap in preparation, put on nice clothes and even brushed your hair. But this outing will probably re-trigger another attack so it's likely days 1-3 will be repeated (see above). But you decide it's wroth it as you desperately want human contact with someone outside the medical community.

You enter Starbucks (nearest coffee/tea place - don't judge). You order a soy chai tea latte and marvel at all the other (seemingly) healthy people milling about. You feel as if you're in the middle a 3D film, the world seems to have an odd sheen to it. You do not feel part of it.

You sit down to meet your friend, so pleased with yourself for making it this far.

"So, what have you been up to this week?" they cheerfully ask.





33 comments:

  1. This is so spot on Victoria! Plus even on the good days doing something as seemingly trivial as going for a coffee can wipe you out. I went to a meeting in London last week and by the time I got home I had completely exhausted myself and ran out of spoons and a week later I'm still paying the price. It's not that hard - get up, walk for 20 mins to station, sit on train for 50 mins, walk to other side of tube station, get on tube for 20 mins, have 2 hours meeting, find lunch. They reverse the previous sentence! Yet all I can tell myself is that people do that every single day! I guess the best way of explaining it to people is like when they have a sick day because they are full of cold - they can't face baking, yoga etc - they aren't having a jolly!

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    1. Hey lovely lady! That is such a good idea - explaining it like having flu full time....will remember that! x

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    2. YAY I'M NOT ALONE :) That is totally me, I struggle to do housework. Mine can come on all different times of the day. I collapsed in a supermarket a few weeks ago. I don't go out alone on the few times I leave the house and then its Drs appointments etc. I'm lucky I have a great GP who listens, Neurology diagnosed me with severe migraines ( Well I could have told them that lol ) My symptoms are getting worse the shaking, talking like I am drunk and bouncing around when I walk as my legs won't let me walk properly. Another hospital appt in Dec YAY hopefully the last one x

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    3. It truly is, and reading this makes me feel not so alone. I thought i was just weak and not handling it all well. but just to realize others feel the dragging after affects makes me know it real. Thanks for sharing!

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    4. I envy people that have many or even a few spoons. When I have a migraine, I have just one spoon and it's firmly planted in my right eye and halfway through my brain.

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    5. I envy people that have spoons (plural). When I have a migraine, I have just one spoon and it is sharpened to a fine point and firmly planted in my right eye and halfway through my brain. It will stay there for anywhere from one day to 5 days. (Zomig doesn't work after 2 or so days) Thanks for this.

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  2. I actually love you for writing this.

    I have been lucky enough to be free of severe migraines for a short while lately, but as a result I have been utterly exhausted. People suddenly think I'm cured, but the daily struggle still exists and I can't ever fully express how knackered I feel. Even trying to explain pacing to my own mother has been frustrating.

    I TOTALLY related to the going out for coffee part and crying during a hangover. Everything is such an effort,

    x

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    1. Oh don't get me started on the whole 'so are you cured now' topic...next blog maybe! And yeah - the exhaustion is so annoying.... xx

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  3. I'm lucky that my migraines aren't that bad. But I can relate to this.

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  4. Absolutely bloody brilliant! This describes my bad times to a tee/tea?!xx

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    1. Sad to hear it describes your 'tea' day so well!

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  5. Beautifully said! I shall share this with friends and family. And then get back to my yoga and baking:)
    Linda

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    1. Love it... hope you're doing well? x

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  6. I've been not quite, but almost, as bad as this for a few weeks. Once it starts, it's very hard to get out of.

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    1. Oh i'm so sorry to hear you're back in the cycle Maia! As you say - yup, really hard to break the vicious cycle...drastic measure - or annoyingly time - will, fingers crossed, do the trick for you! Big hugs x

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  7. I've been close to this for a few weeks. Once it starts, it's very hard to get it stopped.

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  8. I want to say this is brilliant but obviously it's not brilliant for us. So I will say it's brilliantly written. I managed to go to the doctors today after a full week of days 1-3, then grabbed a few bits from Sainsburys and now I am exhausted AND my ankle/knee is sore and swollen!
    The appointment with the Dr was a waste of time anyway because they won't help, I made a list of symptoms trying to help myself help them, but they didn't even look at it! Grr

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    1. Hi! So sorry to hear your GP isn't being helpful - can you ask for a referral? The Migraine Trust can help - and Nat Migraine Centre in London doesn't need a referall. But its your right to have one!

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  9. I want to say this is brilliant but obviously it's not brilliant for us. So I will say it's brilliantly written. I managed to go to the doctors today after a full week of days 1-3, then grabbed a few bits from Sainsburys and now I am exhausted AND my ankle/knee is sore and swollen!
    The appointment with the Dr was a waste of time anyway because they won't help, I made a list of symptoms trying to help myself help them, but they didn't even look at it! Grr

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  10. Not sure the male to female ratio here. Im a male chronic migraine suffer. I tottaly get the 3d movie part and the medication hangover it is difficult to hold down a decent job. People do not understand why I dont put in for more hours. Thanks for sharing this

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    1. Cheers Justin, thanks for speaking out! YOu're right - not enough male migraineurs 'out themselves' - thus not helping the stereotype. Hope you have a good weekend

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  11. Your the 1st person I have met who truly understands me.. I lay around all day but I am supposed to be supermom because I am a stay at home mom. Thanks for this..now off to recling bed.

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  12. I've had migraines since age nine and they last for days as well. I am from an iscolated community in northern Canada and it has been difficult to find a doctor who understands migraines. By some horrible luck of the draw I also have epilepsy. I get cared for by my incredibly understanding boyfriend but he works to support us so I end up alone and in paim too often. Your blog cheers me up! Also, I take topamax too and it used to make me extremely thirsty as well.

    Keep on keeping on :)

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    1. Hi Sara, thanks for your comment. I'm so sorry to hear that you're in a bad place at the moment. I don't know much about the migraine specialists in Canada but have you tired asking Teri Roberts and the migraine.com folk who might be able to find you a list & offer support? Hope you're doing well on the topamax!

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  13. This. is. awesome. I want to hand it out to people who ask how I am feeling, how is "the headache"..on the phone..in the middle of day 2. While I am eternally grateful that my family doe NOT have the horrific nightmare of migraines, I wish that they could understand that "mom" and "wife" do not exist in the middle of an attack. I want to give this to my boss, my children, my husband, my friends, ect, ect, ect.

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    1. hand it out, hand it out! say 'there's this hysterically funny blog you simply all must read!? This might dupe them into reading and understanding. Hope you're doing well today!

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  14. This is totally my life atm... glad i an't the only person living like this :(

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  15. This is totally my life atm... glad i an't the only person living like this :(

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  16. This is such a great description! I battled a chronic migraine for almost 8 years, just recently found that avoiding gluten, soy and caffeine HELP but have not cured me. It's so hard to explain that I'm still in pain, just adjusting to being in less pain. It's difficult enough to explain to someone who's experienced a migraine, what it feels like to always feel that sick for years but for someone who has no idea what it's like? Impossible!

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  17. Well said
    As if I were you
    Although I wouldn't wish my life on anyone
    It's nice to know you understand

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  18. Written so well as if you were me or vice versa. This I will share.

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  19. than k you for this article it resonates with me i have felt so alone with my migraines ... they are similar to what you have described i wait for the days when i have no headache or migraine.. they last maybe 2 days then it is back to the relentless struggle to cope with it all... i cant properly explain to any one how it feels and how it effects a persons life.. destroys it! each day is a struggle and knowing there is more than just me going through this sort of pain is a help thank you so much for your words..
    may every ones day be a good day....Paul

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  20. you have seen into our world here through your own pain.... it seems for some of us it will never end..your words are our words.. thank you for what you have written it would seem a very lonely road to travel being in so much pain and having not many real signs.. people dont understand, i cant even tell my parents what its like they just dont understand why i dont work.. i will be showing them this item to help.. thank you we are not alone... hope today is a good day for all sufferes!!!

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