Getting knocked down, hospital, and ME.

gregf

Senior Member
Messages
144
Location
Sydney Australia
Warning : description of injury.

I am somewhat mobile. I can drive within my suburb and do so to get my lunch most days. Actually I feel better if I do.

One day in early December 2018 I had just bought my lunch and was crossing the road back to where my car was parked. A typical high street, two lanes of traffic and two outside lanes of parking. I had watched the traffic and was 3/4 ‘s across and waved to the truck driver who was stopped. He pointed behind me and as I turned, whack, I was knocked off my feet by a car in a hurry to reverse into the parking spot.

I was on my back on the road between parked cars. I knew something was wrong. Everyone came running over. I didn’t want to move. Yes I said, my head was ok. I tried to sit up. My chest moved as did my upper arm, but my forearm did not. It was no longer connected to me by bone. It was twisted around the wrong way and a bit of bone was sticking out.

One then two ambulances arrived. Yes my head was ok but No ! I didn’t want to move an inch. Someone was going thru my bag, a policeman he said. “He has a disabled permit”. Someone was offering to drive my car home. The ambos tried to move me and I let out a f**********.





I was floating, in front of something large and white like a clock face. All over it, were smaller clocks with a single hand on a 3 second loop, one for every sound. Every sound, every sound, every sound was in a 3 second loop, a three second loop, a three second loop. This vision was not blurry or vague. It was sharp, much sharper then I see in real life. in real life, in real life. Each sound loop repeated 50 times. Like a large machine. Well this is ..... weird I thought. Not scary, not peaceful, just weird like a sci-fi story. Oh I realised. I’m dying. Should I accept it, or try to go back. Funny. I didn’t think the injury was that bad. Not that bad, not that bad.

A new sound loop started. I think he’s coming round. I think he’s coming round. I think he’s coming round.

I slowly pushed out some words. “Am I in the ambulance” ? Yes Greg. Just rest. I later was told it was probably Ketamine when they moved me.

Arrived at hospital. Lots of people introducing themselves looking down on me on the stretcher. Doctors, nurses, more doctors. Sent to Xray. Hi Greg Im ... Sent to CT scan. Hi Greg Im .....

They were worried. Injury close to my nerve. I could not move my fingers. May loose their use.

I was moved again, this time a ward. Nurses talking, lots of noise and a machine that went bleep blurp.

Greg if they operate today it will be at midnight. We think we’ll make you first tomorrow morning. Ok. My shirt and under shirt had been cut off at the accident. They took off my trousers and i tried to get warm and sleep. I have ME I said, I have to stay warm and they pulled up the theatre gown used as a sheet.

Next morning, wheeled down to operating theater. Very cold. Two surgeons, clearly very competent and confident. Hi Greg I’m ..... The anesthetist came over. Hi Greg i’m .... Good I said. “I have ME. We are low in oxygen and acidic. Sometimes anesthetics are slow to work on us”. Ok she said but I was worried.


Wake up Greg. What was going on ? Oh I thought. My arm is much better. They have done a fantastic job. After a while I could move my thumb and then my fingers.

Back in the ward. But I was feverish and fluish. I got myself as warm as possible and it passed. More people. Hi Greg I’m physiotherapists, more nurses, occupational therapists, more nurses, social worker, more nurses.

But I was feverish and unable to think half the time. I had been in just my undies for a few days. There was air conditioning and I was cold and I knew I was getting ME attacks, like fever/flu. I could cook it off but a few hours later it would be back. After 3 days they said Would you like some pyjamas ? Ah Yes please. Rolly eyes.

A friend came to visit, was shocked and went out and got me some singlets, a warm warm dressing gown big enough to use as a blanket, some Berocca , a toothbrush and toiletries, and an iPhone charger.

The singlet would fit over the cast etc on my arm. The dressing gown I could use as a blanket. I started taking the Berocca once, then twice a day. There was no other vitamins or supplements available. The fevers eased a bit. But my temperature was normal. The nurses were sympathetic but didn’t understand ME. I wonder if they disbelieve.

I could not sit up to eat. My blood pressure was a bit all over the place. That will be the ME I said. They wanted me to go home but I could barely stand. They put me in the shower with a chair. Blacked out. Code Blue apparently means you suddenly have 20 people in the bathroom with you. The physios tried walking me down the hall and I nearly collapsed. Physios said No. Cant go home. (I live by myself).

This was good also because I had no shirt to go home. This conundrum took lots of thought. In fact my mind was always a turmoil of unsolved problems. Then the ME fever would come back.

It turns out that an operation or general anesthetic will make your heart symptoms (what some call POTS) much worse and it takes days, weeks to recover.

That was scary ; I knew they didn’t understand. That made it more scarry.

They had me sit up in a chair. Thank god for the dressing gown to keep me warm. Each day I could sit up longer and the passing out stopped. Cleared quicker then I expected.

After 9 days they sent me home. Fortunately an ME friend could take me. Two days later I was in an ambulance back to hospital. The fever, could it be a wound infection or kidney infection ? No evidence and they sent me home again. No one to help and on the street trying to get an uber taxi on my phone without glasses. So sick I accidentally cancelled. People on the street helped and I got an Uber home. Eventually.

I realised the fevers were just the ME bug. I turned off the air conditioning at home (its summer here) and started to improve.

I am using Uber Eats for meals and Air Tasker app for jobs. Save up some money in case you need this. Also I am getting government and private home helpers.

The ME attacks were much worse then the broken arm. Second worst was the mental turmoil of problems. What I learnt :

- Have a letter explaining ME with you. Not generally about the disease but warnings for the hospital staff. Keep patient warm. Very warm. A tee shirt or something for upper body. Provide at least vitamin C or supplements (Berocca best for me), warn that blood pressure (POTS) will be worse and patient may pass out.

- Have an iPhone charger so you can keep using your phone. I have no one else to make/cancel appointments etc. Also the net radio app lets you listen to the radio which feels like home. I’m an ABC person. (Like Aussie BBC).

- have clothes (shirts) to go home in. A big loose shirt that will go over cast is good. Singlets easier too.

- Have money ready for Uber taxi, Uber Eats and Air Tasker. Know how to use these.

- Nurses are awesome. I would listen to the screaming crisis in the other rooms at 4am. Yet the they still smile. We need to pay them more. Male nurses are great too.

I am now dealing with hospital bills and (Aussie) CTP claim to pay the bills. Still have to argue that I’m not at fault : cross the road there because I cant stand/ walk down to the lights because of ME.


Sharing this so you can prepare : the hospital system does not understand your ME and it will accumulate to make you twice as sick. This is 10 times important if you live alone or have no close family. Hope this helps someone.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
sorry you went through all that greg.

Probably the ME did contribute some to your accident. Before I was using the wheelchair, I was finding my self awareness when crossing roads or in car parks was not good as far as everything going on about me. One time I was even crossing road and forgot I was doing so when half way across so ended up standing in front of an oncoming car (someone ended up grabbed me and saved me from being hit). I hope you have no more incidences like that.

the hospital system does not understand your ME and it will accumulate to make you twice as sick. This is 10 times important if you live alone or have no close family.

yes so true! It's a nightmare, you go there and have one thing treated but you come out of there ME worst.

The ME is often worst then what one is there for! When I was in hospital for double pneumonia and on an antibiotic drip for that, I honestly thought ME breathlessness I occassionally get was far worst than having the double pneumonia. ME at times has given me a far worst then that pneumonia cough. If only doctors could understand how sick we feel with ME.

If you need more blankets when there or something, ask for it. Sometimes we need to be demanding some or they will not worry about your ME issues at all. It's very hard work advocating for oneself while in hospital.

I've 3 times been sent home from hospital wearing one of those short hospital gowns. With one of those times the dr did not even give me a second gown to wear the other way to cover my butt (they are open at the back) so on that occassion I was left trying to catch a taxi with my butt showing.

I've found out since that the hospital keeps some donated spare clothes and one can actually get some to go home in if one asks for them (a lovely nurse finally gave me that info).

I'm glad you had someone to go and stay with on leaving hospital.

Uber eats, do you know if they are in Adelaide? I have not heard of air tasker before. How's the new NDIS system treating you? the support you are getting now is it the NDIS? did you get any more support than previously under the new system?
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Sharing this so you can prepare : the hospital system does not understand your ME and it will accumulate to make you twice as sick. This is 10 times important if you live alone or have no close family. Hope this helps someone.
I had a similar experience in Queensland. ME, that's just CFS, and we don't treat that. I need to be kept cool, not warm, because of my neuropathy, but they did not understand that. What they did understand, and respond to, was orthostatic intolerance. They made special provisions. I am not sure they knew what POTS was though, but I have NMH not POTS.

I was not let home for nearly two months, but then I could barely walk, my issue was a broken ankle and surgery, in 2012 I think. Walking rehab was very slow, but then what can you expect from an ME patient?
 

gregf

Senior Member
Messages
144
Location
Sydney Australia
Thanks for your kind wishes guys.

Tania I dont think Uber is much in Adelaide yet. Uber taxi not much. AirTasker dont know. They are apps for phone/ipad. Download is free.

The problem is once you're cold and feverish, you cant think to ask for warm clothes/blanket.
Funny how some ME folk must not get hot. For me, must not get cold.

- Vitamin D. I was 10 days without sun. Most ME folk need vitamin D. Add some to your hospital bag. Now home in the sun and getting better.

- Spare key. Carry with you a spare key to your home. Give this to your trusted visitor to get your emergency/hospital/travel bag filled with supplements and all you need.

Be prepared.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Thanks for your kind wishes guys.

Tania I dont think Uber is much in Adelaide yet. Uber taxi not much. AirTasker dont know. They are apps for phone/ipad. Download is free.

The problem is once you're cold and feverish, you cant think to ask for warm clothes/blanket.
Funny how some ME folk must not get hot. For me, must not get cold.

- Vitamin D. I was 10 days without sun. Most ME folk need vitamin D. Add some to your hospital bag. Now home in the sun and getting better.

- Spare key. Carry with you a spare key to your home. Give this to your trusted visitor to get your emergency/hospital/travel bag filled with supplements and all you need.

Be prepared.

thanks greg, you confirmed what I thought about that uber food stuff here for me, I think I did look into that in the past.

I dont have one of those phones or ipads.

.......

On the subject of hospitals and supplements. Be warned that you may not be allowed to take your supplements when there as everything is supposed to be on the doctors charts while you are under their care "their responsibility" as they put it.

I once took all the supplements I take with me (something the ambulance personal made me do) and when they saw me taking them, they did not want me taking them as it was not prescribed "by them" and they did not know about ME stuff.

They ended up making me give them all my supplements for "safe keeping" and I was worried they may loose it (I dont think I ended up getting it all back either or that may of been the time before when they lost my supplements). On loosing my supplements, they later say they were not responsible for them as patients are expected to look after their own items they bring to hospital.

(note all the things I were taking were actually recommended to me by my ME/CFS specialist but hospital did not care)

After that incident I wont take my supplements to the hospital as they are too expensive to have a hospital take and loose them, I end up having to argue with ambulance officers as they always want whatever one takes taken with one whenever they are called out due to a collapse.
 
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