I had another collapse today :(

[taniaaust1]

I know I shouldnt be out of bed right now but really wanted to talk to someone about it all. Im stressed about it so will post then go straight back to bed.

If I dont get the home help (mentioned on my blog) I truely wonder what will end up happening to me. Today I got someone offered take me out shopping while she was doing hers but I only made it as far as being taken to the bank, ,post office and chemist (I'd run out of molybdenum for the deficiency) and then knew I was in trouble and no way was I able to do any shopping . So I ended laying on a bench legs up and skulling water trying to recover fast enough to be able to get some shopping but 10-15 minutes later.. I was still the same. (sometimes with POTS i can recover fast if Im laying and drinking but not always).

The other by then had finished her shopping and I was in a situation where I was in doubt if I'd even be able to make it to her car only 100m away (for those who dont know metric 100m is 2 pool lengths). My head was really hurting and spinning and nausea was happening and my brain was so dazed. She helped me up and I made it only about 10m before my legs started shaking and my whole body started twitching and then my legs were also too weak to support my body weight so I crashed onto the concrete.. to top things off it had been raining so I got my clothes all wet and dirty too and as I couldnt get up.. I was then in water. (I was about to have one a seizure episodes or go unconscious) and I collapsed outside the door of the chemist shop on the pavement and couldnt get back up .

She ended up driving the car right on the walk way area so I could crawl into it.

This sucks I havent got my shopping for the week as Im just not capable. (my boyfriend dont get back from the cruise he's on for another two weeks.. Im stuffed.. My dishes have been sitting there all for 2 weeks now and I have nothing clean left so now washing something when I need it, I cant get my shopping or anything). Im feeling a bit freaked out.

My collapse was 12 hrs ago and Ive been in bed since till I just got up to do this (not able to do dinner) my head still is spinning and hasnt stopped doing so since the collapse. so its not just the POTS I triggered but Ive triggered off the ME by standing in the post office line too long ( got to get back to bed now.

Im afraid for my future.....

 

[Nielk]

Hi Tania,

I feel so bad you had this setback. I was happy to hear before that you are doing better and now this!
You probably tried to squeeze too much into one day. It's too bad that the friend who was driving you couldn't do the food shopping for you. Do you have any grocery stores that you can call and they deliver?

It's very understandable that you are afraid for our future when you are in this state. It must be very scary to just collapse like that. You were lucky that you were not alone.

I wish you a quick recovery!

 

[Enid]

tania is there anyone near who can help - I know all you say well - collapsed in street head spinning stretchered to A & E semi conscious (useless there). Episodic passings out followed. Where is your Doc (any idea about ME) - can you find local food delivery, any firm or other locally who will come to put things right for you at home - charities etc. It is an awful time (personally believe viral at this extreme stage). I found sleep/rest/bed eat nourishing foods if poss only aided. This period did pass. Hope someone will come up with better advice.

 

[maddietod]

Tania, just want to say I'm so sorry you're going through this. I can't be of any practical help, but I send hugs and balloons

Madie xo

 

[Sallysblooms]

I am so sorry. Do you have a folding seat for lines and rest when you go out? Standing can really do bad things. Do you have a church you can call? Maybe they can help or they know who can. HUGS to you!!!!!!!

 

[Nielk]

Sallysblooms,
I think your idea of a folding chair sounds great. I didn't think of it, but with Tania's pots problems and her tendencies to faint, I think it could be practically very useful.

 

[Sallysblooms]

Yes, I use one. It sure helps me.

 

[rydra_wong]

Tania, I too am sorry and wish I had any idea how to help. It sounds very scarey. Is there a local church nearby with a service group that helps shut ins you could connect with? I too hope someone has a good suggestion or a few for you. Take care

Rydra Wong (you knew me in a prior avatar)

 

[sandralee]

Hi Tania,

Youve probably already looked into my suggestions, but Ill share what I do to get by anyway.

Coles and Woollies have online supermarket shopping and deliver to the door. There is a delivery charge, but its not too much, especially if you dont specify a specific delivery time. I find having things to eat on my bedside table like fruit and nuts is good when I cant even sit up. If these dont fit your diet, there maybe other finger foods that might work for you.

I have a small three legged stool which folds into a cane. I wouldnt be without this. I really only manage to get out for essential doctors appointments, and the stool is terrific for sitting down when checking in at the counter.

I also use a wheelchair for those times when I just cant stand, but need to go out anyway. I was able to attend a dear friends funeral using the wheelchair. Mine cost $250.00, but you can hire from most chemists for a couple of dollars.

I know that these suggestions cant help right now, but they maybe things to consider when youre feeling a little stronger.

Take care,

Sandra

 

[Andrew]

I know I shouldnt be out of bed right now but really wanted to talk to someone about it all. Im stressed about it so will post then go straight back to bed...

Im afraid for my future.....

A few years ago I could barely get out of bed. I know how scary it is. If I didn't have someone to help me, I would have been in a real jam. But I did learn some things from being that sick.

All my meds/supplements were in a bag next to the bed.
I had some pill boxes so I could I could dole out three days worth at a time. This saved energy.
I had a pitcher of water next to the bed, and cups.
A big wastebasket, tissues, etc.
Also, my bed was wide enough that I also had some stuff on the bed next to me.
Basically, I could get to a lot of stuff without getting out of bed.

When I went to a doc appointment I always took a folding cane chair. Here' an example: http://www.thewalkingcanestore.com/inc/sdetail/322/325. You can find ones that cost less. This really makes a difference for me. I never tried to stand. I was always sitting (unless I was walking).

On my blog I have tips about dealing with food http://forums.phoenixrising.me/blog.php?327.

Also an article about caregivers, but I don't know if/how that applies to you.

Another thing that helped is another pwc told me I could call him every day to talk if I wanted. This really helped make me feel less alone, even though he could not do anything.

Anyway, I'm hoping for the best for you.

 

[taniaaust1]

Coles and Woollies have online supermarket shopping and deliver to the door. There is a delivery charge, but its not too much, especially if you dont specify a specific delivery time.

I know Ive looked into that in the past and now cant remember what they said.. maybe they said they wouldnt deliver?? (im in a small country town). I'll look into it again.
...

I'll say more when Im better. Im still very weak this morning (and dizzy too) and just using the keyboard is making my arms hurt and start twitching and jerk. I feel like Im still close to seizure activity.

 

[rydra_wong]

A few years ago I could barely get out of bed. I know how scary it is. If I didn't have someone to help me, I would have been in a real jam. But I did learn some things from being that sick.

All my meds/supplements were in a bag next to the bed.
I had some pill boxes so I could I could dole out three days worth at a time. This saved energy.
I had a pitcher of water next to the bed, and cups.
A big wastebasket, tissues, etc.
Also, my bed was wide enough that I also had some stuff on the bed next to me.
Basically, I could get to a lot of stuff without getting out of bed.

When I went to a doc appointment I always took a folding cane chair. Here' an example: http://www.thewalkingcanestore.com/inc/sdetail/322/325. You can find ones that cost less. This really makes a difference for me. I never tried to stand. I was always sitting (unless I was walking).

On my blog I have tips about dealing with food http://forums.phoenixrising.me/blog.php?327.

Also an article about caregivers, but I don't know if/how that applies to you.

Another thing that helped is another pwc told me I could call him every day to talk if I wanted. This really helped make me feel less alone, even though he could not do anything.

Anyway, I'm hoping for the best for you.

Wow, Andrew! You are a very practical guy! Your blog is great! I am impressed!

 

[taniaaust1]

tania is there anyone near who can help - I know all you say well - collapsed in street head spinning stretchered to A & E semi conscious (useless there). Episodic passings out followed. Where is your Doc (any idea about ME) - can you find local food delivery, any firm or other locally who will come to put things right for you at home - charities etc. It is an awful time (personally believe viral at this extreme stage). I found sleep/rest/bed eat nourishing foods if poss only aided. This period did pass. Hope someone will come up with better advice.

sorry to hear that happens to you too. Ive had people ring the ambulance twice due to the POTS (I usually manage to stop them from doing so.. ER is bad and even if i cant walk, they just wheelchair me to hospital door saying "CFS" and kick me out). The last ambulance officers who attended me due to a POTS collapse were great and actually had heard of POTS before (so they just carried me out of the building to my boyfriends car).

Not sure when the POTS will pass.. Ive been this bad or worst with it for many years now.

 

[taniaaust1]

I Do you have a church you can call?

Im not christian. There was a christian lady thou who did used to help me but then went to disbelieving in CFS being real so then stopped helping me and instead started making those comments we all get. She was good friends with a doctor in my local town who dont believe in CFS and I think she mentioned it to him.

 

[taniaaust1]

Sallysblooms,
I think your idea of a folding chair sounds great. I didn't think of it, but with Tania's pots problems and her tendencies to faint, I think it could be practically very useful.

Im wondering if there is one of those chairs which one can also put legs up in. I had a POTS collapse after sitting (when I'd overdone it just talking to someone in their lounge) when I went to get up.. I found I couldnt stand at all. I need my legs up if Im still.

 

[taniaaust1]

A few years ago I could barely get out of bed. I know how scary it is. If I didn't have someone to help me, I would have been in a real jam. But I did learn some things from being that sick.

All my meds/supplements were in a bag next to the bed.
I had some pill boxes so I could I could dole out three days worth at a time. This saved energy.
I had a pitcher of water next to the bed, and cups.
A big wastebasket, tissues, etc.
Also, my bed was wide enough that I also had some stuff on the bed next to me.
Basically, I could get to a lot of stuff without getting out of bed.

When I went to a doc appointment I always took a folding cane chair. Here' an example: http://www.thewalkingcanestore.com/inc/sdetail/322/325. You can find ones that cost less. This really makes a difference for me. I never tried to stand. I was always sitting (unless I was walking).

On my blog I have tips about dealing with food http://forums.phoenixrising.me/blog.php?327.

Also an article about caregivers, but I don't know if/how that applies to you.

Another thing that helped is another pwc told me I could call him every day to talk if I wanted. This really helped make me feel less alone, even though he could not do anything.

Anyway, I'm hoping for the best for you.

Hi Andrew thanks for the post. Im glad to hear that you've improved. I was long term (9mths) bedridden in the past too... so I know exactly what it is like to be stuck in bed and having another have to care for me. (in my case my 10 year old daughter at that time had to become my carer... she'd set all my stuff up by the bed before she went to school.. I couldnt even get to the toilet).

Another thing that helped is another pwc told me I could call him every day to talk if I wanted. This really helped make me feel less alone, even though he could not do anything.

It isnt an issue with having no one to talk to. (lots of nice people here ) but more of a problem with the actual life stuff and the things which NEED to be done and I cant do myself.

I are thinking about getting a fold out chair but need one in which I can also put my legs up. My collapse before this one was just due to going out and chatting to someone while sitting down without having my legs up (Id only walked about the length of a pool). When I went to stand.. I then just couldnt and collapsed and couldnt walk at all.

So Im thinking a fold out chair without legs raised on it wont help much.. after Ive been on my feet even for extremely short times even when im moving about, I need to be sitting with legs up (if im not laying). (sitting without legs up has the same kind of affect on me as standing does thou maybe just a wee tiny bit better.. still causes POTS for me ).

On my blog I have tips about dealing with food http://forums.phoenixrising.me/blog.php?327.

Fortunately I arent bedridden right now... as I have a special diet Im on for my insulin issues and have been told I need to eat meat or eggs (protein without carb) 3times daily before I eat anything else as it stops insulin from spiking. Unfortunately that means Im having to cook a lot which is tiring.

anyone know of a fold out chair on can carry about with one which one can also have legs up?

 

[Nielk]

Tania,
Have you tried support stockings? I know it helps with my o.i., I'm not sure if it helps with pots.
I know the it's so hard to adhere to but, especially in your case, I would be so careful NOT to overdo things.
I think that you, like many of us, when we feel a little better, we over estimate how much our bodies can do.
It's very frustrating, but, like my doctor says, only do half of what you think you can do.

 

[Andrew]

I had a folding foot rest, but frankly, it was useless. It was only four inches high. Not enough elevation. I can't say I searched a lot, but maybe you can find one that is taller. Someone told me there are wheel chairs that recline and elevate the feet.

BTW, before the ICC came out I would not tell caregivers I had CFS. I would give them a vague answer. But now if they ask, I print out a copy of the ICC and hand it to them.

 

[taniaaust1]

Tania,
Have you tried support stockings? I know it helps with my o.i., I'm not sure if it helps with pots.
I know the it's so hard to adhere to but, especially in your case, I would be so careful NOT to overdo things.
I think that you, like many of us, when we feel a little better, we over estimate how much our bodies can do.
It's very frustrating, but, like my doctor says, only do half of what you think you can do.

Im only doing the things i MUST do now.. I only leave my house for doctors appointments and shopping.. I dont even do my dishes much. Its impossible for me to cut back being on my feet less then I are now. (I even dont always cook or eat).

All the time I spend on computer is with my legs up.
....

No i havent tried support stockings but know that is probably what I need to try. (I get hot whenever Im on my feet so a bit put off by the thought of stockings when Im hot and sweaty). They are expensive too and Im currently broke.
but yeah.. I think I do need to try those when I get some money to buy some. Who knows.. maybe they would help me.

 

[taniaaust1]

There has been a break throu.

Someone has told me of a POTS and autonomic dysfunction specialist at one of the hospitals interstate (so I'll need to fly there) and this one does seem to be taking on new patients (going by the website). So Ive emailed him asking if I can go and see him (he takes referals from all over Australia)... fingers crossed it isnt a huge wait.

I just hope the referal to go and isnt too hard for me to get from my current doctors who dont believe in POTS. (I may need to go to a new doctor to try to get the interstate referral).