Lily Tessa




Archer Leo

What the hell is wrong with my body.

The best way to describe it is its like feeling horrendously poorly, every single day. Like carrying round a virus with you that just doesn't leave unlike other viral infections. When you are poorly you get to lay down in bed and rest, until you are better. But I don't. Because this is my life.  Every second of every day is a struggle. A battle with my own body with no end in sight. Every day I wake up and know I'm still going to be in the same amount of physical pain. The pain in my head varies but it's always, always there. Sometimes like a building pressure, a band squeezing and squeezing, tighter and tighter with every movement I make until it's excruciating (that's the easiest one to cope with, believe it or not) and other times it's a rushing, a roaring, a pounding that doesn't end, doesn't so much as waver. Those ones are the worst, the pounding. Both because I'm physically sick with it and because I can't function at all through the level of pain. Its harder to keep up the act, even though I try to. I refuse to go to bed and succumb to it. I just sit there and feel it, and act like I feel normal so my kids don't suspect. Every day it's one of the two types. For as long as I can remember..childhood, adulthood. Not once in my entire memory have I ever experienced a pain free day in my temples.

Next is the nausea and vertigo. Every single day I feel sick, faint, dizzy. Again, nothing seems to get rid. Not the amount I eat or what I eat. The amount I drink or how active or inactive I am. Always nausea, always there. I could be sick every single day for the rest of my life if I let myself. But most days I force it down. How am I only just realising that this isn't right, isn't normal?
Then there's the dizzy spells. I experience vertigo daily many many times a day and have at least one period a day where I think I'm going to black out. I used to sit there in primary school and grip the sides of my chair and will myself not to pass out because omg, the embarrasment. I taught myself from a very young age how to stop it from happening - excuse myself to the toilet, head between legs, deep breaths. And continued to do so all through out high school, and now my adult life.

and finally. last but certainly not least. The bone crushing exhaustion I feel in the depths of my body upon wakening. Like the other symptoms, it's 24/7. Easier to ignore some days, my stronger days, makes me want to curl up in a ball and weep on others. Brain fog. part of the exhaustion. I feel like I'm wading through thick mud inside my brain constantly. Everything exhausts me. Conversations, walking, playing with my kids. Doing nothing at all. It all exhausts me. I'm tired 24/7. I could close my eyes and fall asleep, any time - any where. (I fell asleep at my desk so much in sixth form I once got hauled in to the head of sixth forms office. 'Don't you think you should start getting earlier nights Abbie?' she'd asked me, half concerned, half smirking. I just shrugged and agreed. Easier than trying to explain that it wouldn't make a jot of difference. I'd felt like this my whole life. and no it wasn't going to go away. and no a doctor wasn't going to help me, miss.)

I've got better at hiding it. I've had a whole lifetime to practise. Looking normal on the outside, behaving entirely normally, meanwhile inside my body is screaming at me to SLEEP. SLEEP DAMNIT, JUST SHUT DOWN. It's not a gradual thing. It's there when I open my eyes, just as the other symptoms. As soon as I wake up each morning I feel the exhaustion in every inch of my body. My bones hurt. My muscles hurt. Actively ACHE and tender to touch. Like i've been doing marathons all night not lying there fast asleep un-moving.

It feels like my body is screaming out to me each and every morning 'This isn't right..DO SOMETHING!!' But what can I do body??? WHAT CAN I DO????

I've seen the GP so many times. My blood tests come back normal. I dont have some deadly disease or tumour. Thank god. I've been under the neurologist since childhood. Tried 30+ types of migraine medication and had procedures such as migraine specific botox. nada helps. So what is it? Why have I had to battle with my body like this every single day of my life? I do wonder if it is entirely all to do with my chronic migraines. And the other symptoms are just symptoms of that. If I didn't have these migraines would I be free of the other symptoms too? Maybe. But I'm not too sure. Other phrases have been thrown around by the GP over the years too. Fibromyalgia, Chronic fatigue Syndrome. But none of them have stuck. Because really, nobody knows. Nobody knows why I'm like this. Nobody really cares enough to delve deeper and why should they?? It's just one of those things. Some people have crappier bodies than others, I guess.

I'd love to be inside someone elses body for the day. I think about it a lot. To have a day without these symptoms. Without all the unrelenting physical pain. God, how easy must it be? I can't even, truly, imagine, if I'm honest. It's been the norm for me to struggle in this way for so long, that I forget that not everyone else does too. this is NOT the norm. I need to keep reminding myself of that more often, I think.

I don't know where I go from here. I'm so truly grateful for all that I have in my life. The help, the love. and the fact that these symptoms are not being caused by something horrific. So incredibly grateful. But I'm sick of being silent about what I'm having to deal with day in and day out. Something nameless, causing me pain with no signs of a cure. I think that maybe I've been silent for too long.

I've been thinking about all of it a lot recently. Life is too short for me to accept that nothing can be done. I accepted my pain a long time ago, when I was a teenager, and that acceptance hasn't helped - it's made me miserable. Do I really have to see out the rest of my time here on this wonderful planet in this level of pain? I think I'm going to give it a year. Try and get every test done. Go down every avenue that I humanely possibly can in that time frame. Because I need to start fighting this. Whatever's making my body feel this way I'll find it. I mean, it has to be something right?? (I fear I already know the answer to that one, I fear there is not. and there is nothing to be done.  - but at least I will know I have tried) )

Once the year is done, if I am no further on, I will give up. I don't want to spend my life fighting a battle that can't be won. Then I think perhaps the acceptance will come for real. That I'm still beyond lucky to have the family and life that I've been given. That I was just meant to have this body, feel this pain. A more poetic thought may be to think that maybe by me dealing with these daily symptoms, means I'm taking it away from someone else? then at least I can give it a meaning. But before the acceptance, I have to try. I owe it to myself .I owe it to my children. To experience life with a mum who is pain free and has *gasp* actual energy!

So the silence ends today. It's time to start fighting back against my own body and see where it takes me.

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1 comment

  1. Such an honest and brave post lovely, I'm so glad you're going to be doing all the tests you can! My sister also has chronic migraines and reading your symptoms it sounds very similar. I hope you find an answer xxx