What I say - “Yeah I am doing ok”
What I Mean - today I am out of bed and that feels like a miracle. I still hurt in my brain, my eyes are still sore and I am trying my hardest to concentrate on what you are saying, but compared to how I have been, this pain is bearable. I am desperate to get out of my bed and out of the house and so even if the pain gets worse I may stay out. This doesn’t mean I am faking my pain, it means I am faking my ok-ness. The reality is m, an ok day for me would have most people in bed.
What I say - “my migraines have been playing up recently”
What I mean - I am in constant pain. My head feels like it has literal bombs going off in it and I fight a daily war with myself over self worth. I fight to stay positive and remain upbeat. I fight to get out of bed and function. I feel like I am at war with my own body. I don’t know if there is any relief out there for me and I am trying to stay hopeful while also accepting what is. It is hard and I have days where I just want to cry with frustration, but don’t coz that will hurt my head.
What I say - “thanks for that idea, I will try it out”
What I mean - it have tried it. I have tried all the ‘its’. I don’t wanna come across as a dick or ungrateful that you care so I say I will give it a go but I have been there, done that, got the shirt. Dairy free? Done it. Gluten free? Yep. Sugar free? Uh huh. Essential oils? Naturopath? Medication a, b , and c right though to z. Hot baths, cold showers, piercings, massage....I. Have. Tried. It.
What I say - “wow that’s an interesting story”
What I mean - I don’t want to hear about your friend with a tumour, a stroke, a seizure, migraines for 25 years. I don’t want to hear about their miracle cure or what helped them. It either freaks me out or makes me depressed. I can’t handle it so please don’t tell me.
What I say - “prayer is always good, thanks for praying”.
What I mean - I believe in prayer as much as any christian. I believe God can heal. But unless you have a word from God that I will be healed, pray instead for my peace of mind and for strength. Praying for my healing and then being disappointed when it doesn’t happen actually makes things harder for me. It makes me feel like I have failed you and God. It makes me feel like I am doing something wrong. Belief and faith are two separate things. Believe God can heal, but unless you have the absolute faith certainty that he will, I have a list of other things you can pray for. And if you say you will pray for me, actually pray for me. Don’t just give me lip service. And if you don’t pray or aren’t a Christian or whatever, then it’s ok. Don’t say it if you don’t mean it.
What I say - “I am learning to accept this as part of my life”
What I mean - I am learning to accept this as part of my life. I am not defeated and giving up but I need to accept that this is. Please accept that it is ok for me to do that.
Since yesterday I have been really bothered by something. It seems like a small, inconsequential thing, but I realise it speaks to something so much bigger.
My husband is sick with a cold/flu bug. On my way home from work I stopped off at the chemist to get him medication. The chemist assistant asked if I needed anything and I told her that I needed cold pills for my husband. “Man flu?” she laughed. “He’s probably dying” I joked. And that was it. Just a couple of passing comments in the course of a day. Nothing to worry about.
But it is bugging me. I realised afterwards that I had talked about my husband like he was a big baby that was overreacting. He isn’t; he hardly ever gets sick and when he does it is usually pretty rough. I don’t think he has a made up flu or is looking for sympathy. I don’t believe he can’t handle sickness as well as I can. In fact, I don’t believe ‘man flu’ is anything but sexism.
If my husband talked to another man about how emotional I was being because I was on my period, or how I was overreacting to something because I was an emotional woman, I would be absolutely furious. I would tell him that he was perpetuating stereotypes. I would explain how simple jokes speak to something bigger in our society about how women should be viewed and treated. He would never talk about me this way, so why did I make jokes about him?
Our society has taught us that men are big babies. They get ‘man flu’, ads tell us that men can’t look after their own children properly, that they are slobs if women aren’t there to tell them off. We have relegated them to useless, stupid, uncaring children that need contestant supervision.
And so we eye roll and laugh and make jokes, and never once think about how much we hate it when men do the same to us. And then we are surprised when men in society accept that role and become dead beat dads, uncaring and thoughtless. Can we really complain about it when we don’t expect and ask for better?
so to my amazing Luke, I am sorry I laughed. I am sorry that I didn’t turn to the lady and say “actually my husband is sick, not faking or complaining”. I am sorry I perpetuated a stereotype that treats you as less able than your wife. I will try and do better. I will try and speak of you only as I see you and know you. I will speak of you with the same respect that I would want you to speak of me.
I demand better of myself.
I have pain in my brain today
It settles over me like storm clouds
Thick with electricity and ominous rumblings.
Creating thick fog in my head that my thoughts fight through,
Each one alight with throbbing agony,
As they wing their way across my synapses,
Screaming the alarm of the incoming destruction.
I try to sleep through it,
Hoping that there will be relief for me soon,
But the pain is now an ocean of churning waves,
And I am but a boat being swallowed by the tempest.
All I can do is hold on and hope for the violence to end,
Knowing there will be no rest for me today.
I pop pills, realising as I do so that I am considered a statistic of an epidemic,
But accepting that I would rather be an addict,
Than live in the grip of this monster.
Even though the pills only take the edge off,
Enough for my body to rest, for my mind to shut down.
The pills don’t work because the glory of my grey matter is that,
In making my body function on good days,
On days like today it takes my pain and transports through my nerves,
To every part of my system.
My muscles weaken, my joints groan, my organs scream with my pain.
My very body rebels against me.
My doctors tell me I am too young to be living like this.
They say I shouldn’t need so many pills.
I have now know more than my specialist about my condition
Because, as much as they may know from text books,
And all the articles that, I too, have devoured and digested,
They will never know what it is to live in the reality of my body.
I am become pain.
My eyes are pulsating in my skull.
My very teeth hurt.
There is nothing left but to accept defeat for today,
And wait for this storm to subside.
I live with chronic migraines. This means for 3-7 days of every week for the last year and a half I have been in bed in excruciating pain.
I lie in bed on my support pillow, with my light blocking eye mask, my sound blocking ear plugs, hoping that this time my pain killers will work. It feels like a lightning storm has erupted inside my skull, starting in my left eye and working its way around. It can be like this for days. I can literally sleep for 48+ hours because the pain is so exhausting.
Other times I lie awake, wishing I could fall asleep, but the pain is keeping me awake and my body isn’t tired. I want to scream, but it hurts too much. I want to cry, but that will make it worse. Sometimes I can make it out of my room for food, other times my husband has to make sure I have enough supplies next to the bed to get me through. Sometimes I can eat, sometimes I vomit. My body can get sore from lying in bed too long, even though we paid for a orthopaedic bed. Sometimes I can make it to the bathroom by myself, sometimes my husband has to hold me as I shuffle my way along.
My life isn’t always like this though. On my good days I am like every body else. I take my dog for a run. I go out with friends. I go shopping. I go swimming. I go on dates with my husband. I watch movies. I am loud and bubbly and happy. On my good days you wouldn’t even know that I have an illness that makes me an invalid.
Though I have good days (which I am eternally grateful for), I am still chained to my bed. On my bad days the chain is short. I am locked onto my bed or in my house by the chain of pain that doesn’t allow me to go very far. But even on my good days that chain exists. It may be longer and allow me to go further, but at any time it may reel me back in.
Case and point, this morning I was going out to see a friend I hadn’t seen in a very long time. I drove out my drive and onto the road and WHAM! The pain hit with such intensity that I was retching in my car. Thankfully I hadn’t gone far and was able to turn around and make it back home, where I crawled into my bed to ride it out. The chain had loosened for a moment, only to pull me back in unexpectedly.
Long journeys are now out of the question for me. I cannot be far from a bed at any time. I cannot be without my mask and earplugs and pills. Where I once loved to go on long road trips with my husband, now we have to be content with short drives around our town. The chain doesn’t stretch far enough for us to leave town.
I am tired of the chain. I am tired of having to cancel on everyone repeatedly. I am tired of feeling like my life revolves around my bed. I hate feeling like a prisoner to my own mind. I am tired of feeling like my good days are a blessing rather than the norm.
I wish I could find a way to break this chain for good. Until then, it has a hold on my life.
A blog about life, love, theology and everything on my mind.
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