Update

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I’ve been back in hospital for a few days and the good news is that they’ve ruled out anything major which is great as the symptoms I was having tally up with some scary conditions and illnesses. The downside is that there still really aren’t any answers. Had a very negative experience at the hospital, mainly due to the doctor on the ward being a gastroenterologist and not a neurologist but not having the humility to accept it wasn’t his area and to pass it over to neurology. Plus, he wouldn’t listen to a word you said (I also heard it when he was talking to other patients) – because I’ve been having some bowel dysfunction he was focusing in on that as a main thing (probably due to it being his area) but he didn’t get that I’ve been having IBS type symptoms since my late teens which have gotten worse/more regular as I’ve gotten older so it wasn’t a new thing. The MRI was completely clear which is great.

I did eventually see a neurologist (because I’m out in the sticks, the nearest hospital doesn’t even have its own neurology department so they get them in on certain days) and she reckons it’s probably a trapped nerve combined with Covid after effects. Re the bladder stuff, she reckons that, considering I wet the bed on and off until I was fifteen and have always had urge and after dribble issues that it’s probably a chronic bladder weakness thing, rather than a neurological thing (whilst the bedwetting hasn't returned, I am sure the other two are getting worse though). I still feel rough though and considering I’ve had tingling in my hands and feet and increased fatigue for at least a year, I do wonder if something else is going on there. Lyme disease is a possibility as I’ve been out walking and hiking in far flung places around Europe and it would fit with the symptoms. I’ll continue to monitor everything.

I will just end with saying that hospitals are by far the most stressful places to be as an autistic person (being in a ward with tons of other people, lots of noise, no real privacy, lots of lights) and I wish more would be done to make hospitals more autism friendly places as I’m sure all the stress didn’t help what was going on.

 

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Hey,

Tell them you have autism and would prefer a side room on your own, that might help you. Hope you get better soon and drink lots of water while you are in there.

 

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Hey,

Tell them you have autism and would prefer a side room on your own, that might help you. Hope you get better soon and drink lots of water while you are in there.

Thanks, forgot to say that I was discharged yesterday! I did make a thing about the autism but they didn't care. The worst thing was when they did a lumbar puncture (extremely unpleasant experience!) on the ward and I was screaming my head off and crying in a room full of people. The doctor wanted to do another one the day after because they didn't get enough fluid) and I refused saying it was a very humiliating experience to have it done in a room full of people. He replied saying the curtain was closed to which I retorted that I forgot that curtains drown out all sound and make people magically disappear which he didn't find amusing. He then refused to have anything further to do with me and passed me over to neurology.

 

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Do you have an advocate that can accompany you when you go in for tests and hospitalizations? Speech Language Pathologists if on staff
could possibly Also help.

 

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Having autism is a load itself then being put in with a bunch of people compounds everything.

 

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I'm happy you're finally getting some part of a clear picture. Hospitals are unsettling, especially during this time with COVID. I hope you get to the point where you can see the picture, get all answers

 

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Lyme diseasee sounds like something to follow through can they check in that. Thank God you are a highly intelligent person we shouldn't have to self diagnose but...
And is there a family member or friend that can help by being pre a ent collating doctor notes and advocating for your comfort and care

 

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One of the best things about American hospitals is that we almost always get our own rooms with walls as soon as we’re moved out of the ER. I know from my rellies in the UK that there’s not a lot of privacy in the public health system over there. Sorry you were treated like that.

On a pain scale of 1-10, how bad was your pain during the lumbar puncture? I’m supposed to have a spinal tap soon. I’ve had at least four sessions of fluoroscopy corticosteroids injections in my lumbar spine, which use the largest needle gauge. The local anesthetic didn’t help me at all (neither did the injections). I figure a spinal tap can’t hurt much worse than those?

 

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Well, next time say you need a side room or you will refuse to go in as it will exacerbate your autism. Good for you speaking up about the magic curtains. It does make me laugh when I work on the wards. Worst part, is the doctors dont know how to open them afterwards leaving me to push them back.

 

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Hi @Sci_Fi_Fan, I hope you're recovering and are feeling better day by day. That experience you had in the hospital really sounds dreadful and I'm sorry you had to be subjected to that type of treatment. NO one deserves that! Others in the posts above suggested you come with a relative or a close friend who can be your advocate, or "watchdog" and take notes on what the doctors say and just speak out at the times when you are unable to do so. If I were you that's the first thing I would do, arrange to have someone with your when you go to the dr office, clinic, hospital or wherever. I was also surprised to read they did a lumbar puncture right there in the ward. I thought hospitals had separate rooms for that, like a procedure room, or as a part of an operating suite. And they didn't even explain what the lumbar puncture would be like?
I'm sorry you had to go through all of that. And just having a curtain closed does not really do much and I'm surprised the doctors, nurses, etc. didn't have the sensitivity to realize that.
I'm glad you were able to "talk back" to the doctor and tell him that curtains do not have a magical way of drowning out sound or making people in the room disappear. Well, I see your point although that silly doctor didn't or wouldn't.
But y'know, hospitals are stressful places even for people who are not autistic. Unfortunately that goes with the territory.
To sum, I think you would be well served by asking a family member or friend to be your advocate and accompany you to appointments etc. If I had someone like that available, you know that's what I would do! Do continue to feel better and if you want to vent some more, we are here!

 

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Do you advocate for yourself and explain to the staff that you are autistic and what happens to you when you are placed in certain situations.

 

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Thanks for the support everyone, it really means a lot! I did mention the autism time and time again but nothing changed. I feel it's a lack of training/understanding really. The neurologist was great with me though so I feel she knew how to put me at ease. I just don't think autism and the hospital culture over here mix well at all. I'm classed as 'high functioning' (although it doesn't seem like that on some days!) so am fine by myself and don't need someone else to help. I think the bottom line is that, being out in the sticks relatively speaking, the hospital is chronically understaffed and under-resourced so in case of an emergency, I'd just go to either of my parents' places and go to a hospital with more facilities. It's also made me sign up for private medical insurance as, whilst it doesn't cover chronic or pre-existing conditions, I'd hate to have another scare like this one and repeat the same experience.

I also feel it was really embarrassing dealing with incontinence issues and being on a ward. With my mobility issues, changing standing up is really difficult so had to do it on the bed. I was always terrified of a nurse or doctor coming in mid-change. It also wasn't great that everyone else could no doubt hear the sound of tapes being done up and I'd have to walk to the toilet to dispose of used nappies and pull ups and whilst I was using black sacks, it was probably pretty obvious what was going on.

The only positive I will say is that all the nursing staff and doctors were very understanding when it came to my incontinence in that, during examinations and procedures it was very obvious I was wearing protection (including the high capacity Rearz nappies with rather embarrassing designs as I didn't want to leave anything to chance) and no one said anything or batted an eyelid.

I still feel very much in limbo in terms of a diagnosis but at least I haven't got anything life threatening going on. If it is a trapped nerve then my osteopath should be able to sort out.

 

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Hi SciFi fan, I'm really glad it isn't anything life-threatening so that's one thing less to worry about! And I too suspect those who are in charge of your care just haven't had the training and understanding about working with autism. That's rather unfortunate as autism is becoming a more widely known diagnosis and more and more people have it. Years ago of course there was autism but no one really knew what it was or how to identify it. Younger doctors and medical people may be more knowledgeable about it. And as I see what you're saying in that autism and the hospital culture don't mix, particularly in a smaller place. I get the impression you were in a smaller hospital as opposed to a major urban medical center and in the U.S., as I suspect it is in England, it's you just take your chances and hope for the best. I can understand how you feel about a nurse or doctor coming in at mid-change. They have seen it all before but I still can imagine how that would be. The worst part would still be the element of surprise. (It's 10:15 p.m. and there's a loud thunderstorm coming. So if we get cut off I'm not being rude! Thanks for understanding! ) As for the sound of tapes, maybe you can place your hands right over them to muffle the sound. But in truth, the sounds are just blending in with the typical sounds of a busy ward. I am glad the nurses and drs were understanding. Guess I'll go ahead and submit it. The thunder is really loud now and it's raining! Hope this helps!

 

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@snow Sorry, I realised that I hadn't answered your question (damn this brain fog!). I'd say it was more discomfort than outright pain but I found it extremely unpleasant and it's definitely the most unpleasant procedure I've had done thus far so I'd rate it an eleven. I have an extremely low tolerance for pain/discomfort though and it sounds like you've had other spinal procedures so I imagine you'd probably find it far less uncomfortable than I did.

To be honest, I think the main issue with my procedure was that the doctor was struggling to get fluid out so kept on trying different places. I did find I was dehydrated in hospital so getting blood (or indeed any other fluid out) proved to be a challenge for the doctors.

 

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@Sci_Fi_Fan Thank you for your answer