Get it off my chest, doctors comment

[Jazymay]

When the Neuro had diagnosed me and given me a physio to work with in the hospital, it was on a Friday. I wasn't going to do anything productive for 2.5 days. I decided to just walk as much as possible, up and down the hospital corridor every day. I used a frame and wobbled all over the place, like on the videos.

Every day I got a bit better and every day the nurses were really impressed with my effort. They stopped to let me past all the time, so I didn't lose momentum.

On the following Monday I was visited by the physio who was really impressed by my progress. They had decided to review me on Tuesday for discharge.

On Tuesday the physio was happy for me to go home with intensive physio at home, and a frame. The Neuro was not happy about that and wanted to keep me in for physio.

This is the bit that really pissed me off! She didn't want me to "go home and sit around doing nothing."

I find that very insulting. What evidence did she have to suggest that was what I was going to do. My notes said that I liked gardening, and I even walked the dog a couple of days before admission to "walk off" the wobbly legs.

This happened nearly 4 months ago now, and I still feel really angry about it. I was discharged with great physios, but NO follow up. Just my regular psych I was seeing before. How will anyone know if something major happens, unless I call an ambulance? Also, my psych thinks the Neuro is really good.

Thanks for listening

Jaz

[tabey]

Dear Jazymay

hi first of all its great too meet you and merry Christmas. I totally understand why you are angry I've had the same thing happen too me on several different occasions by neuro's and doctors.

I'm a big guy and yes since being hit with FND I've gain a few more pounds than id like but i do not eat unhealthy i love fruit and veg and do not have a sweet tooth at all and i really dislike cake but one doctor turned around and said to me maybe leave the cakes and chocolate alone and start moving your lose weight I've never forgotten those words and when I was going in for my MRI scan I had to be weighed the kind radiographer shouted my weight out aloud to the member of staff in their little cupboard with a lady sitting next door to me waiting to go in after me and the person poke their head out the door and said how heavy did you say

my response to that was so I know it's terrible it's my season pass to Burger to Burger King that does it I couldn't help myself but to answer back sometimes people just say things to do get under your skin stay there and niggle way at you.

people assume things way too early and the great saying said don't judge a a book by its cover medical stuff should know better and keep there personal feelings and thoughts in there heads

I'm sorry you had this too but please rant away

tabe

ps i don't have a season ticket to burger King 😂

[Jazymay in reply to tabey]

Lol. I didn't think you had a pass. But I guess it's good to hear you say it sarcastically coz then there is a bit of humour.

I trained as an EN, so I KNOW all about patient dignity, and that was not it my friend!

I think I might try and find this funny. I told my son we won't be serious when I get wobbly, so the next time I was bobbing up and down in front of him, talking away, he made exaggerated head movements with a cheeky grin. I was in stitches. I would rather laugh. You just reminded me.

Thanks!!!

[Leesaloo]

Hi jazmay, it seems wherever you go in life there is always one sceptic who really gets your back up, it’s easy to say let it go over your head but like you it plays on my mind afterwards for a long time. My own mother is one of these her quotation (when is she going to pull herself together and get over this) is one that sticks in my mind. I had 1 months rehabilitation in London hospital for FND symptoms and I thought I did really well too, I just wanted some semblance of life and was willing to work hard for it. Fast forward one year and I’m still struggling on, there is no follow up from anyone so I just keep going thinking and hoping next year will be better. I do think it’s sad sometimes that we are our own cheerleaders but then again we all seem to be fighters and fight on we will.

[Jazymay in reply to Leesaloo]

Yes. It's weird, this no follow up business. And I am left having good days and awful days, though only a few months in!

I have started to notice there is a straight talking, no bull attitude here. I wonder if that is part of the fighter coming out in some posts. Even when views vary, most accept differences, but everyone seems to want to support each other, without much fluffy stuff, which I think is cool!

[Tewa in reply to Jazymay]

Oh Jazmay...the fighter has come out in me as well! I am a Taurus, so it comes naturally. However this nine year health journey I have learned to speak up. I have also had to learn that I cannot allow the medicals to take my power and my knowledge away from me. The most recent horrible hospital experience has tested me beyond what I could have imagined. Yes, I have been seeking validation from the medicals, after all they have the power, the knowledge, don't they? No, not completely. The drs don't know enough about FND, About Mylagic Encephalomyletis, about long-term neurological disorders that are affecting more an d more people. Our toxic world is making many very very ill. The drs are either not taught, or even accepting this fact. And since they believe they know everything , when actually they don't, the finger then is pointed at the patients with MUS...Medically Unexplained Symptoms. So , the battle is ours to fight..as it was when MS, when AIDS , when other illnesses were not first understood. Standing in my truth is a lonely place, as it is for all of us. Continue to seek help, be pro-active in advocating, and do your best to let the disrespect roll off of you. Seek support for others, such as this group and others. Empower yourself as best you can, and take some comfort in your own knowledge. There is something very wrong..physically... with all of us. Something that affects us emotionally, but is not emotionally based.

[Tewa]

Jazmay...happy to hear that PT was helpful for you, however not at all pleased about neruo's reaction and statements. None of which I have told neuros or other drs about my former active life and how I do continue to pursue activities as I can has made an impact. Completely disregarded as if it hasn't been said by me. Obviously not believed and since all of us are viewed thru this filter of 'psychosomatic," it has not bearing at all. This is the medical abuse we all experience.And the more we advocate for ourselves, the more we are also viewed as defending our "non-existent" illness. The "filter" or 'construct " set up by the drs follows us. We are then always seen as "it;s all in your head," All of it an deverthign we do. A no-win situation.

Merry Christmas and hopefully a New Year that will bring a shift in the care we all receive.