Two powerful Dystonian pieces in one week - you guys are strong mothers are you (i mean mothers as in the American rude word) - you both are amazing to live with that kind of hell!/raise a family/keep relationship going - and write with insight and humour..
Stress - you’re right - it is a trigger at least it is for me - the wrong text message or phone call and I go from On to OFF in a heartbeat.
The fast breathing is that hyper fast and very shallow- I get that as soon as my meds start to wear off - so maybe I’m a Dystonian too…And I thought the the jumping tendon in the back off right knee was part of my sciatica…mmmm
I’ve been smoking more regularly as I find a wee toke helps calm me -then the red wine .. and oh now it’s all more manageable x
What a horrible, vile, f@cking nasty, miserable stinking disease it is! I truly loathe having PD, like we all do, of course. But what can we do but "soldier on" with a smile slapped on our mush? Well, we could rant&rail&weep but that won't do us much good either. And then we've got our loved ones (if we're lucky!) and need to show backbone and positivity for their sake. So a delightful shitsh@w all round! Plenty of challenges but little reward for us because we're never going to get rid of this pestilence that is PD.
All l can offer as comfort is: you're not alone! We, your readers, love you very much. And we, the PwPs, understand and sympathise with your predicament. We're in the same boat.
Hope so much that you're soon released from the grip of dystonia and you can get your life back. Have faith it will happen! Usually PD symptoms subside after a while. Grab all the joy you can! Sending love, Sarah 💗
Before I ever experienced dystonia I came across "cervical" dystonia and almost passed out. I instantly thought of my cervix and how painful (from what I had heard) it would be. I was relieved to hear cervical dystonia occurs in the neck, and not in the vagina, which was too terrifying to imagine! Dystonia anywhere is Dog awful, but whew, at least not in the woo haa! Mine has only been in my feet and calves and is from C/L wearing off. Thankful it has only been happening in the mornings when I wake up. So sorry to hear of how and when yours strikes, PD really sucks! But there is dark humor, swearing, and hot pink cat suits to help us get through! XO
That sounds absolutely horrible, Emma. I hope that eases soon.
Two powerful Dystonian pieces in one week - you guys are strong mothers are you (i mean mothers as in the American rude word) - you both are amazing to live with that kind of hell!/raise a family/keep relationship going - and write with insight and humour..
Stress - you’re right - it is a trigger at least it is for me - the wrong text message or phone call and I go from On to OFF in a heartbeat.
The fast breathing is that hyper fast and very shallow- I get that as soon as my meds start to wear off - so maybe I’m a Dystonian too…And I thought the the jumping tendon in the back off right knee was part of my sciatica…mmmm
I’ve been smoking more regularly as I find a wee toke helps calm me -then the red wine .. and oh now it’s all more manageable x
It sounds like hell ❤️❤️
Dear Emma
What a horrible, vile, f@cking nasty, miserable stinking disease it is! I truly loathe having PD, like we all do, of course. But what can we do but "soldier on" with a smile slapped on our mush? Well, we could rant&rail&weep but that won't do us much good either. And then we've got our loved ones (if we're lucky!) and need to show backbone and positivity for their sake. So a delightful shitsh@w all round! Plenty of challenges but little reward for us because we're never going to get rid of this pestilence that is PD.
All l can offer as comfort is: you're not alone! We, your readers, love you very much. And we, the PwPs, understand and sympathise with your predicament. We're in the same boat.
Hope so much that you're soon released from the grip of dystonia and you can get your life back. Have faith it will happen! Usually PD symptoms subside after a while. Grab all the joy you can! Sending love, Sarah 💗
Before I ever experienced dystonia I came across "cervical" dystonia and almost passed out. I instantly thought of my cervix and how painful (from what I had heard) it would be. I was relieved to hear cervical dystonia occurs in the neck, and not in the vagina, which was too terrifying to imagine! Dystonia anywhere is Dog awful, but whew, at least not in the woo haa! Mine has only been in my feet and calves and is from C/L wearing off. Thankful it has only been happening in the mornings when I wake up. So sorry to hear of how and when yours strikes, PD really sucks! But there is dark humor, swearing, and hot pink cat suits to help us get through! XO