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Is anyone else scared to go to emergency?

Discussion in 'Lifestyle Management' started by Tulip, Jul 6, 2011.

  1. Tulip

    Tulip Guest

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    I have had such bad experiences at emergency before that I would rather walk through fire than go again. I have taken the dangerous risk of potentially dropping dead instead of going including in the last few days, the thought just fills me with fear, the same with using my local ambulance service :(

    Anyone in the same boat?
     
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I've often felt that way....made worse by having worked in an ER and knowing how they work. If you could walk in and tell them to give you a couple of bags of body temperature saline on a gravity drip, I'd feel differently about them.

    Sushi
     
  3. ukxmrv

    ukxmrv Senior Member

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    Yes, I'm in the UK and my experiences have been so bad that when I was seriously injured in an accident and in the ambulance I refused to go to the hospital. It was not until later on that my partner took me there and I felt safe enough with him to protect me.

    A&E is a dangerous place for a lone disabled woman to go to in London.

    Apart from the drunks, drug addicts, violent and other scarey people there are the staff who treat PWME very badly indeed. Obviously one does not have to tell them the medical history (I never say I have ME) but any sign of disability or "weakness" is seen by them as an excuse to give a neglectful and third rate service. The staff hide behind screens but leave vulnerable adults at the full mercy of whoever wants to walk into A&E.

    The staff don't have a clue on how to treat a disabled person who is unable to speak properly and defend themselves. Well, they do have a clue. Get rid of them and make conditions impossible so they leave.

    A&E in the UK means queues and long waits in very uncomfortable conditions. If one is in a wheelchair or needs to lie down/sit with legs in a certain way then it is very hard indeed with little compassion or help. Complaints do nothing (I've tried).
     
  4. MEG

    MEG Senior Member

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    Yes Tulip...YES

    Especially the ambulance guys...EMT's that last asked me if I had been drinking???? I was gasping for air...stumbling, slurred speach. I guess maybe I looked drunk, but I was hypoxic. In the ER they put me on oxygen, and I have been on it ever since. But they are local yokels, and I am sure I am pegged as a drunk! HeeHee Who can drink with CFS...NOT ME!

    My suggestion in the Emergency dept...don't say ME/CFS. Talk about what is wrong right now. Talk about your symptoms only..obviously give a good medical history, and meds you are taking, but forget the "fatigue syndrome."

    Please do not risk your life (young son?) because you have been hurt at the hospital...go if you need to. just know that many of us have been humiliated by hospital staff...take us with you in spirit, Please.
    :hug::hug::hug:
     
  5. WillowJ

    WillowJ Senior Member

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    I'd be reluctant to go to ER again. I had a bad experience, was discriminated against on the basis of my disability (my CFS diagnosis, which they could see from my e-chart), and important information did not even make it into my chart notes. I was ignored for hours, left dehydrated and unattended, in pain and having difficulty breathing, then sent home with placebo and a (deliberate?) misdiagnosis, and when I called in with a question, was told to come back (where finally I saw a competent doctor).

    All the same, if you need ER, you should at least phone your doc, make an urgent appointment.

    And if you do go to ER or the hospital, do not ever mention ME or CFS.
     
  6. TinyT

    TinyT Senior Member

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    I've had to go to ED twice in the past few months. The first time I said I had moderate-severe 'CFS' and the second time I just told them about the POTS/dysautonomia (which they didn't know about either).

    The first visit I went for severe stomach pains, nausea & vomiting and waited in chairs for 4 hours. Then went to the after hours Dr clinic at 8am.

    The second time (for the same problem, another hospital) it was thankfully very very quiet and I was admitted within 5mins, given 2x bags of IV saline, morphine and drugs for my stomach.

    I try to avoid the 'CFS' word as much as possible. It just creates opportunity for too much misunderstanding, judgement/prejudice. I did tell them about the POTS and that I faint easily though, which explained the tachycardia & low BP.
     
  7. zoe.a.m.

    zoe.a.m. Senior Member

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    Absolutely. I spent 2.5 years where I currently live seeing the same ER doc each time I went in febrile, exhausted, tachycardic, etc. and he would tell me that I needed to take up jogging. I tried to explain anything having to do with CFS to which he always said, "well, if you refuse to be helped..." I complained to my primary doctor at the time, but it was always awful. I guess other people complained about him as well though, officially, because after that 2.5 yrs, he was fired and so were a few others from the ER. The next time I went in, there were two new handsome and young doctors--that's its own kind of problem, but a much better one :)!

    I decided to go ahead and tell the new doctors (when I've seen them, several times...) right away that I had lousy experiences there with Dr. Bringold and had little faith in the hospital. The treatment was better though, and one doctor sat down with me and said very little was known about CFS but he trusted my knowledge of my medical history. Since then, I even carry myself differently wherever I go where I have to see a new doc; I state with certainty what is going on, yes I've been diagnosed with an illness, CFS "a very stupid name for a very serious disease," and no longer really worry about how I'm seen. There is a way to talk to some medical professionals that lets them know you will not be discounted or minimized. However, there are some doctors/professionals who are absolute shits about anyone without an ER-worth event (in their opinion) showing up in their ER.

    Another thing I have done is to locate an Urgent Care to use when I have something 'urgent' but that doesn't quite require the ER; or, if they are both open, I try Urgent Care first. Ironically, they are the place that hired the shit doc after the hospital fired him, but, once I knew that, I would call ahead and ask if he was on duty and only go in if he was not. They recently "replaced" him and I find that if you tell the people you're dealing with, as calmly as possible, that you simply can't deal with ignorance or ineptitude, sometimes you really can get different treatment.

    I've really been practicing not taking shit from medical professionals for the past year or so though, and it only takes one to send me backward, but screw them!
     
  8. Tammie

    Tammie Senior Member

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    I have wound up there at least once a year since I was 8 yrs old and am now 39......the last 7 yrs I have had ME and most of the trips were related in some way to it; the other times were broken bones and stuff like that...

    ...I have been lucky, I guess, in that every time I had to go there via ambulance, the EMTs were wonderful to me.....the ER experience, though really varied a lot, and it has really depended on which hospital I was at (I have had the "fun" of experiencing 13 different ERs)...

    ....I have found that most of the time people have actually treated me pretty well, but there were a few times that were just horrible. I have also found that saying I have ME goes a lot better than saying I have CFS. The ER is the one place where I think that the US's failure to acknowledge the diagnosis of ME has been helpful, bc most everyone I have encountered has no idea what it is, so I can just tell them it is a neuroimmune disorder with mitochondrial involvement, and they have actually responded fairly well to that.

    Still, the bad experiences make me really scared to go and usually I will do pretty much everything I can to avoid going there. The times I have wound up in the ER since getting ME have been when I have been somewhere public and people freaked out and called despite my insistence that they did not need to.
     
  9. Tulip

    Tulip Guest

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    Thanks.

    I am glad that I am not the only one, but I am sorry that others have had such bad experiences. How do you get past it though?. I can not take anymore abuse, I have had enough.
     
  10. MEG

    MEG Senior Member

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    How to get past it???? HHMMMM I'm not sure. I hope someone has some better ideas than I have....mine was to just block them out and take "US" with you. Not too helpful I guess. Do you have a friend who could go with you?

    I sure do know it is awful...I am "afraid" of the EMT's and paramedics. AFRAID...they can be mean.

    This illness has made me more sensitive emotionally...I have little ego strength left. We need to be strong....
     
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I have a very good hospital in our city that has an amazing ER. The doctor came in after I was doing fine a few weeks ago and asked me how I was treated by each person in exray, nurses, doctors, etc. Each ER and Hospital is different. I got right in also. I am sure many others in the huge city nearby are much busier, longer wait.
    [​IMG]
     
  12. taniaaust1

    taniaaust1 Senior Member

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    Yes I really worry about the ER. Funny how we are meant to be "attention seekers" yet we fear doctors and ER and often wont go near them :p

    Yesterday I should of gone to the ER as I had a big seizure (possibly the biggest Ive had.. I think I posted about it here on other forum?), I though didnt go. (I also didnt go to hospital for another one I had where I was frothing at the mouth during it which a friend all witnessed). Once I broke a finger and didnt go to hospital for it for 6 weeks by which point that finger was HUGE.

    Why? cause I saw it as pointless and I dont want to deal with crap from doctors. The local hospital cant do EEGS and I know would of just rang my doctor who would of said to just ring my specialist, who would of probably would of just said.. I was supposed to have a EEG but didnt (I forgot my appointment months back and accidently missed the scan).
    (I did ring my specialist asking what I should do but he didnt seem very interested and didnt tell me to go to hospital. IF I knew they would of ambulanced me to city hospital where I could have the scan Im needing, I would of gone. Im not going to risk my health for nothing).

    My ambulance experiences have been good, even when I collapsed semi conscious in the city and a stranger rang ambulance (thou I didnt want one but I was in no state to be able to say no). To my surprise the ambulance officer asked me what I thought had caused the collapse, when I said "postural orthostatic tachycardia syndrome" (leaving out that I have ME, I wasnt about to say that).

    To my surprise, he then went proudly "oh I know what that is" "That's what that Wiggles guy had". (Here in Australia we had a famous personality person (from the Wiggles) have to leave his job due to POTS and that has helped some (pity it dont seem to be doctors thou) know about POTS.

    This ambulance guy then due to his understanding of POTS due to the publicity (thank you Greg, yellow Wiggle) knew I'd be soon okay so didnt make me go to hospital and didnt make a fuss over me. Instead, as I couldnt walk, the ambulance people carried me out of the building and down to my boyfriends car and put me into it (with ambulance presence, car was able to be put in the no parking zone) to be taken home to laydown and rest. (The last thing I'd want is to be taken to hospital due to a POTS attack).

    Hospital wise. I think its on all my records at all the main hospitals (ive been in a lot of hospitals) that I have ME/CFS. This makes the hospitals try to get me out of their real fast. As one doctor said to me on discharging me home alone, only able to speak in a whisper and without any home help organised, I wasnt even able to walk out of the hospital and had to be wheelchaired to a car. I got told "We arent here to deal with people who have chronic long term illnesses, hospital isnt the place for you to be so we are discharging you"

    I had one horrific incidence where they sent me home very unwell with ME and hence had discharged me and placed me in into the waiting area of hospital and as I was so sick I was struggling to even sit up, I then ended up falling off the chair and collapsing onto the floor in front of all the other patients waiting which caused quite a stir amoung the patients.

    Shockingly the nurses all in the nursing booth when I collapsed and couldnt get up again and hence started dragging myself along a floor trying to get to a chair.. they all turned their backs to me and made out they didnt see. Other worried patients were trying to get their attention over me on floor but were ignored. This happened in a main Sth Australian hospital.
     
  13. Tulip

    Tulip Guest

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    Yes it's amazing isn't it.

    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".
     
  14. Misfit Toy

    Misfit Toy Senior Member

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    I haven't had to go for CFS related issues in a long time, but every time I do go to the ER, they have been really helpful. I had anxiety from perimenopause and went there and they were nice and gave me ativan. When I said I had fibromyalgia and I was in due to the pain, a nurse came in to talk to me and she had it too and gave me some really helpful info for a better doctor. I go to a little hospital and they take me right in. When I had endometriosis, they took me seriously and gave me shots of morphine.

    When I did go for IC, now that was a different story. At a different hospital and they were awful and treated me like I was nuts. So yeah...it's a crapshoot...yet again.

    Find a smaller hospital. That really helps. Most people go to the bigger hospitals. I go right to the small one and they treat me like royalty! : ) They also give medicine and don't mind giving pain meds, which is incredibly rare.
     
  15. TinyT

    TinyT Senior Member

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    I've luckily had nothing but great experiences with the nurses I've seen (both in triage and when admitted), its the doctors who are usually always complete jerks or have no people skills whatsoever.
     
  16. TinyT

    TinyT Senior Member

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    Thats a good point. Unfortunately in my current location (regional Australia) there is only one local ED. Thats the time I had to wait 4hrs and wasn't seen. When I was visiting family (in another state) there were a few ED's to chose from luckily.
     
  17. TinyT

    TinyT Senior Member

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    I also never say ME or CFS, when I tried to tell the last hospital I had POTS (postural orthostatic tachycardia syndrome), the docs had no idea what it was. They just looked at my stats (I was hooked up to a machine while in bed) and said- oh you aren't tachy at the moment (well duh! I was lying down! Thats why its called POSTURAL tachycardia you idiots!). I had to explain that it was postural changes that I had a problem with, both BP and HR.
     
  18. hixxy

    hixxy Woof woof

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    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.
     
  19. Dainty

    Dainty Senior Member

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    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.

    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.

    *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. :D

    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.
     
  20. Tulip

    Tulip Guest

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    Sorry to hear that you had to go Dainty that sounds awful! But really glad you were treated with respect and taken seriously..
     

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