I had a terrible reaction to an innocuous treatment yesterday. Again. Was this close to calling the paramedics, fighting to stay conscious on the bathroom floor. This one wasn’t like the tortuous 7-hour marathons of faux-malaria, this was swift, severe and very scary. It took over my body so quickly, I thought it might be anaphylaxis, but it was more than that, honestly. With the crashing blood pressure, I got instant violent shakes and chills to my bone – it came on so quickly! – and, this time, a skyrocketing heart rate. I’m used to being cold and clammy and unstable, but not in such a quick and fierce way, from totally fine to yellow/grey-paloured and ghost-like. From feeling good to feeling like I should be hospitalized in a matter of seconds.
I’ve got so much to write and no energy to write it. Every day is a calculated climb to become stable and, as soon as I gain some ground, something – food, medicine, overexertion, emotion, bad night’s sleep, GI problems, menstruation – sends me toppling down and I start the ascent all over again.
I haven’t taken vitamins or supplements since Christmas. Everything is on hold. 5 months since I left my house and went to the rentals after the bad reaction to Cromolyn and, ever since… Life, interrupted. 5 precious months in freefall. I can’t address candida or methylation or leaky gut or adrenals, I can’t take immune modulators or antivirals or sleep drugs or any of the other things I want to try because right now my only focus is: keep your bowels moving, keep your blood pressure up, keep your blood sugar stable, try to sleep.
My father is visiting and it’s like lifeforce. A reminder of where I come from and why I fight. It may feel like we’re forgotten in our four walls – no one to bear witness to the worst of it, unable to accurately describe the severity of illness and the complexity of emotions, putting on a brave face for parents, children, friends, healthcare workers, while, inside, we are screaming, moaning, constantly scanning our dysfunctional systems – but, all of us are loved and thought about by someone, somewhere. And we all have warrior sisters and brothers who understand what it is like to fear death – or, worse, painful, sick, unstable life – alone and misunderstood.
To all of you, even those I don’t know: I see you, I witness your struggle, I know the strength it takes to live the fear and then smile through it, even with something as simple as an exclamation point on a Facebook post. ❤
Rag and Bone Shop of the Heart 
Beautifully stated, as always. We are all each other’s witnesses in this horrendous battle we have been forced to face. I am so sorry to hear of your recent setbacks, Elizabeth. I definitely can relate to how scary they can be — you are not alone in that. Someday, we will all overcome. Thinking of you and sending love and healing thoughts. xoxo
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Laurel! I love hearing from you. Thank you for your kind words. Isn’t it bizarre that we can experience horrible events and not even people in our house would know unless we told them? I remember watching the trailer for Canary in a Coalmine and Jen says she is filming her situation because somebody needs to see it. I totally get that. It’s too unbelievable not to be witnessed or documented in some way. ❤
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You’re not forgotten Elizabeth. Not at all. Sending you lots of love and support across the pond. Hope you have a lovely visit with you Dad without any more nasty reactions ️xx
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Aw, that means a lot. I often think, when people start to feel better, how it must take such strength of character to continue to read these stories of illness. I appreciate your being a beacon of light out there, Jess. 🙂
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I have to admit there are times when I struggle with things from when I was more ill, such as blogs that I used to read. Some silly fear that it could take me back to where I was. But I still want to know how my ‘cyber friends’ are doing so I do still read and follow your posts. I do think of you often and hope that you’re doing okay. xx
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I am so sorry things are so bad right now for you Elizabeth. I’m sending virtual hugs and good thoughts. I’ll be your witness as you’ve been the witness for so many and give us strength to keep going through this.
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Wow, thank you, that brought tears to my eyes. What a miraculous support system this world wide web provides. 🙂
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Hear hear! It helps to know I’m not alone and to figure out what is going on with my recalcitrant and stubborn body. And the emotional support is wonderful! I hope you’re doing better today!
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You have so beautifully expressed what way to many of us go through. Thanks for finding the words, it helps.
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Linda, that is all I can hope for with this blog. That once in a while my words help others in some small way. Thank you for taking the time to comment.
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Oh, how awful. I once had my doctor look me in the eye and say “Karen, when YOU think you ‘maybe should call’ the paramedics, somebody should already be on the phone.”. I wonder if perhaps you mightn’t need the same advice… It does sound like anaphylaxis! Rapid drop in BP, sweating, rapid heart rate, evidence of shock, a ‘sense of impending soom’ (I.e. feeling like you could die). Half of anaphylactic reactions do not involve airway closure. In fact, the outcome for those whom low BP is the cardinal feature tend to not be as favourable. Some researchers surmise that this may be because treatment is often delayed because the anaphylaxis is under-recognized. I don’t want to scare you any more, as anaphylaxis is a scary topic, but please do give your doctor a shout, and ask her or him if it is possible it was anaphylaxis. All the research shows that epinephrine is routinely under used, and it really makes you feel so much better, in moments. If you are sure that it is not anaphylaxis, then I will shut up, but I am thinking of you, and wishing you the very very best! I’m so glad that you have a supportive Dad, who is lifting you up. You will improve again, I’m sure of it.
Karen
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I always appreciate the thought and time you put into your comments, Karen. I am bouncing back in between this episodes/reactions much better than I would have anticipated. That night, after about three hours, I was downstairs having something to eat and watching the Oscars. I felt like shit, but I wasn’t bedbound!
Re anaphylaxis, I’m going to answer you under Jak’s comment so you both see it. X
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😦 😦 😦 I’m with Karen on this one, sounds *exactly* like my anaphylactic reactions to drugs. I’ve never had swelling or closing of airways, just crashing blood pressure, pounding sky high heart rate, vomiting and total ability to even get up off the bathroom floor – it’s classed as Grade 3 anaphylaxis (I’m sure you already know all that, but just in case anyone else reading this doesn’t).
Just wanted to send some big healing hugs. We’re all here for you. Jak x
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That’s so interesting, Jak. I didn’t realise doctors would definitely diagnose an episode like you describe as anaphylaxis. This reaction to the suppository could have been a vasovagal reaction to the bowel irritation or it could have been anaphylaxis, I guess. My anaphylactic shock episodes in the past were not ambiguous at all: hard to breathe, rash all over my face and chest, swollen tongue etc., so I have a hard time identifying lower grade anaphylaxis without those tell-tale signs. Separate and distinct from anaphylaxis, I experienced what I call my “collapsy episodes”, almost always on the first day of my period, so I know now they are mast cell-mediated and most probably anaphylaxis just like you are describing: shallow breathing, pale, clammy, very, very low blood pressure and heart rate that stayed low although I was on the floor, rather than bouncing back like typical vasovagal syncope. I was never treated with epi, only IV fluids and IV morphine (both of which I’ve had anaphylactic reactions to in the years since). I’m highly sensitive to epi, so really don’t want to take it unless I need it, but also don’t want to treat anaphylaxis with salt water and apple juice!
Thanks for the food for thought and support. X
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Sending you love in arms of hugs. xxx
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Scary! I’m thinking of you.
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Thank you for being a voice for so many of us even during your darkest moments. Thinking of you. ❤
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Lara, very kind of you to say. That makes me feel like I’m accomplishing *something*, thank you!
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So eloquently described, Elizabeth. My heart goes out to you for all your suffering, my dear. At times, I wish I can reach out physically and hold you all in my arms to give comfort. But, I also know that it is not possible to hold someone who suffers pain when being held or touched. Happily, your Dad is a comfort. 🙂
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Carol, you DO hold us all in your arms! I see the way you comment on so many blogs and leave support. ❤
Luckily, I don't suffer pain when I'm touched or hugged, so, as long as somebody isn't sick with something infectious, cuddles are welcomed. 😉
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Just keep going – and certainly call an ambulance next time. I collapsed a heap of times from what I now know is dysautonomia – it feels exactly the same as what you describe. Perhaps if I had called an ambulance the first time I would have gotten some bio-data which could have led to an earlier diagnosis.
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Thanks for the comment, Claire! I’ve had the dysautonomia symptoms many times, too. For me, those give much more warning. I’ll become slurry and dizzy and not feel well and they don’t generally happen when I’m in bed or sleeping. I seriously would have to be dying to call an ambulance. Just too much stress and payback. But, I do appreciate the caution and it does give me something to think about — getting tests during a reaction could prove fruitful. X
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[…] massage, enemas, prunes, oatmeal, even my old standby Wormwood stopped working. Which led me to the glycerine suppository on Oscar night which caused the (anaphylactic?) collapse on the bathroom floor. My constipation now spans the line […]
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