Chronic Hope

Posted on | August 29, 2011 | 11 Comments |

In my photos you see me smile all the time – and that’s because I’m happy. I love being photographed, I like blogging, and I delight in the wonderful comments of my readers.

But being happy isn’t an easy thing. I am happy, yes, but it is in spite of a whole fuckton lot of things. Of those, three are the biggies, and they are depression, grief, and pain.

None of them are things you can see when you look at me, and see me smiling. But they’re all there, all the time.

Grief I have talked about before. Depression I never have, here. (Simply put, I take the pills and they do their job. I’ll likely be taking them the rest of my life.) I talk about pain occasionally. Mostly I don’t. But it’s there, every single day of my life.

After all, that’s what it means to have chronic pain, and that’s what I have.

My chronic pain is a migraine that transformed into a daily monster over six years ago, and crouches in my head. Because of it I work less (after not working at all, for a while), I sleep more, I carefully conserve my spoons, I don’t do all the social and friendly things I want to. I walk less. I (really!) write less.

It’s impacted every aspect of my life, from relationships and friendships through to finances, exercise, entertainment, self-adornment and self-respect. Every one of those could be a post in and of itself (but won’t be, today).

Because I also have to be careful when it comes to sex, play, and kink. Will having orgasms (with all the epic fluid-loss that entails) increase my pain? If I have this early morning romp with Apollo, will I be able to do chores in the afternoon? If I put Hylas into total enclosure rubber, will I be able to get him out quickly if he needs me to?

Often, I need to choose between having orgasms myself or giving my partner the pleasure. Often, it’s easier to go with mutual masturbation side-by-side than to expend the energy putting the tab A (be it hand, tongue or cock) into slot B. Often, a desire to wank ends with me falling asleep before ever getting my hand in my pants. And sometimes my libido takes a long stroll around the block while my system gets used to a new medication I take to help control the pain.

But for all of that, I am happy. My life has challenges, and I have one hell of a good time regardless. It is full of people I love who love me back, excellent shenanigans, relaxing evenings, and an understanding that I do what I can when I can. I take my meds, I don’t overdo it (much), and I live my life as best I can.

I’d nearly given up hope of ever being without the pain, though. Until I saw a different neurologist last week. There’s a chance of getting rid of the pain! A good chance – one with an 85% success rate. It’s going to be a challenging six-twelve months, but at the end I should no longer have that monster crouching in my head.

I almost don’t dare imagine how awesome that will be. But I want it, and I will work for it.

I live in pain. I am as happy as I can possibly be. But I deserve better – and I will get it. Just you wait and see.

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11 Responses to “Chronic Hope”

  1. Roz
    August 29th, 2011 @ 10:45 pm

    You’ve mentioned this before lovely, but I really can’t imagine how you manage to function with that pain. I’m in awe of your bravery and hope the 85% works in your favour.

  2. KaziGrrl
    August 29th, 2011 @ 11:03 pm

    Of all pain, the one that does me in the fastest is the headaches I get… cannot function at all with them! and so I am in awe that you can keep going with that constant monster!

    Hoping for you that you get the miracle you deserve!! {{{hug}}}


  3. Nadia West
    August 29th, 2011 @ 11:42 pm

    Good luck! Migraines are evil, and I didn’t even have them so chronically as you do. Magnesium citrate supplements helped me, but I’ve been told they don’t help everyone. I hope working with your doctor brings relief. Migraines really are life-altering.

  4. RJS
    August 30th, 2011 @ 1:18 am

    Delightful Dee, I’m sorry to hear about your struggles. I can relate, since dark depression runs in my family. I’ve been battling with it for decades. I also take meds – they’re my safety net. I’m rooting for you, my dear.

  5. Iona
    August 30th, 2011 @ 6:54 am

    I’ve always admired your tenacious disposition towards happiness. It was encouraging before I knew what you juggle and awe inspiring when I found out that you do it in spite of all those challenges. But now, OMG! I am bouncing I am so happy at that 85% possibility! YAY!

  6. Clive
    August 30th, 2011 @ 5:46 pm

    Within this context, Dee, the smiles and happiness that invariably shine through your images and posts is astounding and very very impressive. I will have my fingers and toes crossed for you for as long as it takes. Big hugs and the best of luck xxx

  7. Dee
    September 2nd, 2011 @ 3:19 pm

    Roz – So lovely to see a comment from you, hon! I don’t always function with that pain, alas. Those are the days I’m home in bed, or very offline from the world.

    Kazi – It’s cope or give up, a lot of the time. Often it’s background pain – like a background noise, I notice it is there only if I focus on it. That’s when it’s behaving! When it kicks up, then I have a bad day …

    Nadia – Magnesium (along with feverfew, and a mouthguard to stop me grinding my teeth at night) is one of the things that made a big difference in the intensity of my pain. Definitely reduced it to a manageable level for me!

    RJS – Thank you for rooting for me, and for your lovely email (a response will be forthcoming). Meds are amazing when they work, aren’t they?

    Sapio – No way in hell am I going to be in the 15%, that’s for sure! But there are going to be some hard days ahead. Eep.

    Clive – As long as you don’t cross your legs, dear. *grins*

    xx Dee

  8. Cara
    September 10th, 2011 @ 12:18 am

    been reading for quite some time now, always a bit too shy to comment. ( love that you are a curvy girl and not afraid to post photos.. i love taking them but too scared to share )

    but after reading this post about migraines i had to say something.. do you eat a lot of wheat, barley, malt or rye? i had migraines alllllll the time along with some other pains. nothing stopped them. no one knew why i was getting them. medicine and chiropractors didn’t help. i then went gluten free for my stomach issues and the migraines stopped almost instantly after the bit of “detox” from gluten. Just thought i’d share something that helped me with my migraines :) good luck i hope they figure it out for you

  9. Dee
    September 10th, 2011 @ 10:51 am

    Hi Cara,

    Thank you so much for delurking and commenting! I must admit that I have not tried going gluten-free. Must add it to the list of things to try… Caffeine, cheese, red wine, chocolate etc don’t make any difference (no foods found so far, actually). But you never know – so thank you for the suggestion :)

    xx Dee

  10. Roger
    October 25th, 2011 @ 12:34 pm

    Do you mind my asking what you will be doing that has an 85% success rate. My wife has the same kind of daily migraines that you do and nothing works. Painkillers dull it a bit but don’t get rid of it. If there is something that may help her I’d love to know about it.

    I hope this works for you. I know just how horrible the migraine monster can be.

  11. Dee
    October 26th, 2011 @ 6:20 pm

    I don’t mind at all, Roger. I hope it helps!

    The neurologist I saw (here in New Zealand, so no point me giving you his name) put me on an epilepsy (!) medication called Topiramate. I had to build it up in my system incredibly slowly (starting at half a teensy tablet a day – now I have two teensy tablets twice a day). Once I was at full strength I was to start limiting the maximum number of pain-killers I was allowed per week.

    We figured out a starting number by working out my ‘average’ number of pain-killers (not easy, as the amount I have to take varies wildly). From there, the amount I’m allowed reduces by one a week. Once I’ve had no painkillers at all for six weeks (I still can’t imagine that), then I can see my standard doctor, and start preventative migraine medication. Then it’s another slow stepping down off the Topiramate again.

    The Topiramate does something to my central nervous system, and it helps to break the vicious circle my chronic migraine/daily headache has between pain and painkillers. So it’s a slow process, but should be a successful one.

    xx Dee


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