Today I saw a statistic which read “migraine is the 7th most debilitating condition in the world” and I know many will read this and doubt it – its but a number. Some people will read it and will go wow – a few will even comprehend it – but for those with chronic migraine they will sigh and say yes; yet the world does not see it, let alone understand it.
Chronic migraine takes your life away…. but there is HOPE or as I recall my Bubble Bee and Rainbow Days.
I sat after reading this statistic making an Aztec warrior outfit for my now 10 year old son.. I was simply sticking feather to some old PJ bottoms. Then POW the silent tears began to roll, turning to weeping and becoming sobs – as I was taken back to my ‘bubble bee’ day…. now 4 years ago.
I had been in a chronic state of what I now know to be Hemepelgic Migraine for over 3 years by then – yes a migraine with aura every single day for 3 years… and my son then only 5 came home from school jumping with joy as they were all to dress as a bug for the end of term….and he was ‘going to be a bubble bee’…. I smiled sweet winching in pain and weeped then as I do now… he had no idea, as did no one else what a task that was going to be – it was like asking me to climb mount Everest ……… a few years previous a bug outfit would have been something I would have knocked up in my sleep.. whilst still running the house and holding down a more than full time job with one of the world’s biggest professional advisory firms… but now I had chronic migraine.. a genetic neurological condition – which no one can see – yes an invisible illness of pain, confusing, a condition which effects every sense in your body…it stinks – its cruel – it takes those little highlights of joy away – it losses your memories – it locks you in a world of darkness. Yes there are statistics and reports, but unless you have been there you truly will not understand. For its a condition for which words cannot do justice.
At the time of bubble bee – I was at a very low point and struggling with my daily goal to get out of bed and have a bath…. many a day I would mange to run it only to be back in bed exhausted and in pain before it had filled….I lived in the dark, in pain – wishing I was not here. I had seen doctor after doctor and all saying ‘you have had a minor stroke, give it 6 mths and you will be fine’…hmmm… but something in me pushed me on that day… beyond anything I could image… I got angry – how dare this stupid genetic illness take away my ability to give my son his little bubble bee.
Omg I pushed it and pushed it and pushed it…. it took weeks… I could not think straight as my brain was just not working, I could not see from the aura, I could not sew from the numbness in my hand. I could not move from the pain in my head…. I started and I stopped…and started and stopped…. but come that end of term day – I had made an all be it badly hand sewn and newspaper stuffed bubble bee tail and pompom head band for my then delighted little boy… I was in a mess at the end of this. My left side of my body was at the point of paralysis… the pain of the horse was kicking me in my head…my eye sight so full of aura it was like living in a snow storm… but this bloody illness was not going to take away me seeing that smile – I so needed to see him walk into school and I have no idea how I found the resolve to take him myself that day… Through a haze of migraine aura and pain, I wobbled with him hand in hand to the school gate. I was detached from reality and everything was very surreal – but a small part of me was there – watching that smile and has he bounced into school – there it was – “I’m a bubble bee miss” he beamed….yes if I am honest he looked a little shoddy and to at the end of the day his tail had burst and had left newspaper all over the class room floor– but he was my little bubble bee… my happy little bubble bee.
I watched the other mums, some rushing to drop their children off and get to work – high heels clicking – this was just another annoying thing the school had insisted they do… you could feel the stress and the panic to get rid of the kids and rush along – I watched the other stay at home mums in their small groups admiring each others handy work – I even watched a small group sympathise with the lady on crutches whom had hurt her ankle……. I stood weeping in a wave of people, sounds, smells, light….unable to think, to process the surroundings; yet knowing, this happens every day and I was missing it all….. but today I was a mum – an all bit is not quite on this planet one – but today my son went to school as a little bubble bee and yes I – yes me – had done it.
I wobbled back to the car in floods of tears…. as I recalled then and recall again today how much this illness has taken away… I gave up everything, what was the point everything ended the same – me in pain in bed….I lost my job, my self respect… I lost me…..but worse of all I cannot recall my twin daughters as babies, I cannot remember their first smile, their first words or their first steps.. I do not recall my sons first day at school, I know birthday’s and Christmas’s happened and I helped a bit – but I have no recall – I have never done those things ‘normal’ mums do – like help in the class room or the school fêtes…. god years ago I was an events manager – a school fête would have been peanuts…. yet now I never lasted a whole day on a day out.. let alone help to organise one.
I of course fell in to bed for weeks after this – but came out of it with the strength to try once again to find out why I was so ill…this surely could not be a minor stroke – that the famous words of “give it 6 mths and you will be ok”…. this had to be something else…… this little bubble bee day pushed me to go back to the doctors and insist we try again to find an answer.
BUT today 5 years on. I am now a single mum of four and at the point where I do the school runs everyday and yes I still stand on my own away from the crowds – but I am there. And yes I weep as I make this Aztec outfit for the same child…. but it has finally pushed me to write this day up – and tell this story as a beacon of HOPE for all those whom are there now – locked in that land of migraine hell – daily pain and auras – which no one can see.
There is no magic pill – I so wish there was – but slowly – very slowly you can get through this. Baby steps do not even come into it – its tiny weeny millimetre steps – but they all add up. You hear people say one day at a time – but when your there its one hour at a time – I know – I truly do.
And with all my heart I wish everyone has a Bubble Bee day – a day which tips the balance and provides the strength to somehow start a journey of recovery.