We need help when we are sick. Sometimes we ask for it. Sometimes we just hope that our loved ones will read our mind and turn up with what we need when we need it. Sometimes our family and friends want to help so they provide what they think is useful and kind, but it’s actually not as helpful as they think… it’s so hard being sick AND being understood… but it’s also hard for those who are doing their best to support us.
Oftentimes, especially when the migraine is very bad, my wish list of how you can help me consists of a single item: SILENCE. Please, don’t do the dishes, don’t open and shut the garage door, don’t have friends over, don’t leave the door to the lounge room open so the TV sounds fill our home, don’t laugh or squeal good-humoredly… sorry, but I’m in agony and silence means silence.
Other times my wish list is a little longer – on top of the silence, don’t cook things that will fill the house with strange odors, but could you please reheat my heat-packs every hour if possible, to save me a trip out of bed.
Then there are the times when my list gets more complex: I’d love someone to massage my neck, if anyone could track down my essential oils for me that would help, maybe a piece of buttered toast and another bottle of electrolytes would be good, and perhaps grab my mobile phone out of my handbag so I can listen to some quiet music or a meditation when I’m feeling a bit better…
But there are also times when I think that I need all those things, and then when the toast arrives it makes me feel ill looking at it, or someone touching my neck suddenly feels intrusive rather than caring, and there’s the frustration that comes from the door being opened and shut (with the best of intentions), especially if it pulls me out of my deep coma-like-healing-sleep and now I’m awake again and fully aware of my pain… sigh.
There is no doubt that our family and friends receive mixed messages when we’re ill… it’s not deliberate, it’s just that healing is a moving target.
What I need in today’s migraine attack is different to what I needed yesterday – because the symptoms are different.
To make things worse – when our loved ones are trying to figure out what we need today, they ask questions. The problem is that when I’m sick and you keep asking me questions (again, with the best of intentions) the questions become problems not solutions – you’re trying to help but you’re filling my brain with noise and options and confusion… my brain fog is fumbling, it makes me frustrated and irritable.
You’re trying to help, but it’s making things worse, and even though I don’t want to be cranky at your kindness… sometimes I just am.
Add to that the fact that migraine treatment is also a form of torture. Solitary confinement and sensory deprivation are what we need to survive an attack – but in large doses (like those of us with chronic migraine need) the solitary silence becomes lonely and depressing… we want company, but it needs to be gentle and fleeting… not too much… but not nothing…
SIGH – it’s not easy I know – but trust me when I say it really stinks for us.
Anyway – I was thrilled to see an image on the Migraine World Summit websites that seemed to recognize how hard it is to ask for help. It suggests that you fill out some ideas that will help people know what to do the next time you’re unwell, including, “these chores would help me…” and “The food / drink I would love is…”
[Image source: Migraine World Summit: Instagram / LinkedIn]
I can’t imagine being able to fill this in when I’m sick, or being able to come up with cast-in-stone answers, but I do like the idea of using it as a template to talk to the family before the next attack:
“So kids, I would love it if you could help me out with some housework the next time I’m unwell for the day, but at the risk of sounding fussy, maybe just fold some clothes, do some ironing or swap the sheets on your bed, but don’t wash the dishes because the clinking sound is hard to sleep through… and definitely no vacuuming!”
OR
“In terms of food, maybe you could just bring up some dry crackers, some jellybeans and a drink bottle, but no coffee or a toasted sandwich because sometimes I’m good for it, but other times the smell is too much… it’s too risky, so let’s keep it simple… but, before I forget, maybe only bring in food if you hear the toilet flush so you know that I’m awake… it’s better not to bring anything in otherwise, because I might be in a deep sleep…”
Maybe there’s a way that you can create some strategies that will work most times, and they can become your go to version of a Migraine Love Language that your family can follow.
I think that it is important to find a way to express what you need to the people who love you and want to help you… but maybe do it today when you’re all feeling ok, rather than wait for the next time you’re sick.
Take care taking care – your way, Linda x
Thanks Migraine World Summit for the discussion prompt!
The Mindful Migraine 
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