After many bad experiences that have made me scared to call emergency, I'm pleased to report I had a mostly positive experience the other day. It might have had something to do with the fact that the paramedics were greeted with the sight of me naked, vomiting, screaming my head off and lying in my own feces, confused and incapable of moving myself beyond writhing with fingernail marks all over. I think being taken seriously from the start made a big difference from then on out.
In the past I've dealt with paramedics, doctors, and nurses who have passed things off as anxiety that wasn't and clearly indicated that they did not believe what I was telling them, but this time everything my caregiver and I said was absorbed and acted upon. One example is my allergy to Benedryl (the actual active ingredient, not other ignredients) and another was my MCS reaction to paper. They were accommodating of ways to keep paper away from me and since I came in without clothing but couldn't tolerate paper scrubs they let me go home with a gown and blanket with verbal agreement to return them. I was given a "special" room with a sliding door that sealed off from the rest of the place so it had less noise, the lights could be controlled and most importantly the air filter we brought could actually be effective.
There was one nurse who clearly didn't believe that she was wearing any chemicals that I could possibly be reacting to who was unfortunately the one with the most fragrance, but I didn't encounter her until later in my stay and she wasn't mean about it, just blissfully ignorant and since she was respectful of my countermeasures to avoid breathing her chemicals it was not too difficult emotionally. In other words, despite her personal thoughts she was professional in every way and thus I did not feel degraded in the least. Would that others were the same!
We aren't asking a lot, just please give us standard care and don't make fun of us. It really isn't too much to ask.
And that's why I hate 98% of emergency nurses, they are in the top nursing position, very very well paid and on a major power trip. They are bullies, sadly nursing is filled with bullies, both bullying of the patients and of other nurses. It's a myth that nursing is a "caring profession".
I've encountered some very mean nurses, but then again there are some good ones. The two I had upon arriving the first time were kind to me - they weren't what I'd call nurturing, but they were considerate in what they said and did and it made me feel like I was safe there. I was shivering rather violently upon arriving and I remember hearing one suggest they remove the vinyl stretcher from under me because it's probably making me colder, while another nurse patiently kept urging me to keep my mouth closed long enough for an accurate temperature reading, as it kept timing out. Not a hint of frustration in his voice at all. They were tactful about how messy I was and in dealing with that, and I felt comfortable in their hands. I suspect that it had more to do with being seen as a serious case than the character of the nurses in general.
When I told the EMT that I'm hesitant to call emergency due to bad ER experiences he asked me which ER I usually go to. I couldn't remember, but I like to think they would have considered taking me to a different one had I given a name. I've actually read paramedics swapping stories about how if they get someone they think is faking it they'll purposefully take them to an ER known to have mean nurses.
Awful stuff. But it makes me wonder if the reverse is true, if someone is scared to go due to bad experiences if they might transport to a better place.
I suffer with extreme MCS and EMF sensitivity. As you can imagine, going to ER is my ultimate nightmare. This happened a couple of times earlier in the year when I started having seizures (this was the start of my EMF sensitivity and I didn't know what was happening so was terrified).
ER is hardly a healthy place for a person with MCS. Each time when I left the ER, I could smell a coating of chemicals from the hospital air all over my body. This resulted in a major worsening of my MCS to the point where I can no longer wear any kind of mask. That makes life incredibly difficult.
I guess you could say I'm terrified of having any kind of medical emergency where I need access to a hospital.
*hugs* hixxy
I have a severe case of MCS as well (for an idea of how bad read
this post,
this post, and
this post) though my EMF sensitivity is only mild. The chemicals from outgassing rubber in an ambulance or products worn by nurses and doctors are immediately life-threatening to me, since my throat swells restricting or even temporarily completely cutting off my airways.
However I have noticed that in extremely dire circumstances there tends to be up to several hours where my MCS is not as severe; my theory is that it's due to the extra adrenaline dumped into my system, sort of a milder version of an epi-pen. It is this phenomenon that made my recent ER trip much less the MCS nightmare it has been in the past. The coating of chemicals from leaving that place is awful...I'm still smelling them in my hair.
We should have a thread about MCS masks, I've discovered so much from trial and error that I could pass along and I'm sure others like you would have helpful info for me as well.
Another project I've been working on off and on is how to arrange medical info for emergency personnel that would clearly spell out my MCS needs in a way they're taken seriously and instructions are carried out. For example with this trip they placed an anti-nausea tablet in my mouth, without even asking me....I seriously considered spitting it out, as it was flavored and I knew that it contained all sorts of binders and fillers and preservatives and such, and I only take compounded meds due to my reactions to all that stuff, but in the end I decided to go with it and see what happens. It was soon after that I began shivering violently and my teeth chattering and such, and was that way all to the hospital and there afterwards where they couldn't figure out why. If I had had, say, a note from my doctor stating I should not be given oral medications during an emergency situation then that issue would have been avoided since IV meds don't contain that sort of stuff.
My hope is that by getting all this information togehter and presenting it in a way that it must be taken seriously, I will no longer fear the ER or be stressed by brainfog getting in the way of remembering crucial information. My caregiver helps a lot with that, but she isn't always immediately available and if I'm overwhelmed I can be quite helpless. I'm also telling myself the worst that can happen is my airways being cut off, in which case I'm in the best place for them to deal with that so I should be fine.
Oh and one last thing, ERs are *supposed* to be "fragrance-free", at least where I am, yet even the soap that was supposedly in line with that was anything but. If I were able to muster up the energy I'd write to the ER with instructions on how to be fragrance-free, since it's people like me who actually require it and they need to truly comply instead of assuming they are because of the label on a bottle.
