I woke up this this morning and the ME wasnt good at all.
My boyfriend woke me up when he arrived and all I could do is lay in bed for a further 3hrs (till 1.30pm), to exhausted and dizzy (and with a sore throat) to move (I started shaking just to sit up and have a drink). Today thou is my shopping day so I ended up having to get up when I was finally to the point where I felt I could do so without collapsing onto the floor. (I felt like I was going to have another seizure). Boyfriend was good and running back and forth getting me drinks till I was to the point where I could get up (poor thing.. I was so grumpy due to being so not good today).
Anyway.. so we went to the shops (me lethargic still and still slightly dizzy). While there they announced they were going to do free giveaways (one had to be in a certain place at certain time to get them). So boyfriend waits at the spot while I say I cant stand there so I'll keep moving and shopping nearby but come over when they start handing out the giveaways.
The lady finally comes over so I went back and she held up some very nice knives and said everyone would get one each for free.. but yeah there is always a catch. The catch was.. to get one one had to watch a demo thing first... **sigh** of cause there was no where for me to sit at all. So I ask the lady if a chair can be arranged for me as I need to sit or I faint.. but she said no.
So I then asked if my partner could get my free knife for me when he got his (he was going to stand there and watch the demo) and the lady goes "no.. walk away and you yourself dont get one".
Anyway.. I got pissed off as once again due to my disablity and peoples unreasonableness.. I was going to miss out on what everyone else was getting.. just cause I was unable to stand there to watch the whole demo. So I started getting upset.. telling her I didnt think this situation was right. (When I said I couldnt remain standing there, she just turned to me and said "well Im disabled too and manage"...
).
So at this point I got very upset and cause a scene with her which caused EVERYONE who had gone to get the freebees to leave as me and her were arguing thou my partner was still there and was going to watch her demo and get his knife. She thou then said she cancelling the demo and my partner couldnt get one either. (This happened in the Strathalbyn woolworths supermarket). and then she said.. "if you dont like it, complain".
So at this point, sick or not.. I WAS going to complain to management.. it wasnt so much about missing out on a nice free knife but more about the whole principle of how she was unfair to the disabled.
So I went to where she pointed to complain (I think she was shocked as she hadnt thought I would) only then to have the supermarket person say to me that it was nothing to do with them.. (me: ah yeah.. well it is in YOUR supermarket who is holding this freebee thing and allowing it to be held here like this in a way which discriminates against disabled).
So after argueing a little with that women about responsibility, my hot headed boyfriend who didnt want me to complain has by now loudly jumped in and telling them it is their responsiblity (yeah.. good on him). At that point the women said she didnt deal with complaints and she'd get the manager. ***sighs.. they made me think she was the manager till that point**
The manager comes out and thank God some decent people do exist... ***by this time Im crouched on floor while having the discussion***... (they didnt give me an appology but they handed me a free knife at this point) and the manager said she'd tell that other to put a chair there so ones who couldnt stand for long had a place to sit. So Victory! (thou it took me a couple of hrs to calm down.. I was all adrenaline and feeling more unwell then earlier).
.........
To top that off today. I read the email my dietitian had sent on my need food plan and in the email it says
"I have found that many people with CFS do better by severly limiting the TV they watch. Do a test.. go without TV for a week and see if your energy levels improve. If the thought of going without TV worries you, it suggests you may be addicted to it, within is an even better reason to go a week without TV. Write down all the troubling thoughts and emotions that arise when you dont have TV to distract you."
and so her mail goes on further in all that line..
I actually was without TV for 9mths and I certainly didnt notice the ME get better (actually it got worst as I was so bored I was then doing things I shouldnt do and overdoing it). All I can say to her email is "GRRRRRRRRRR". I think I'll leave a response to that specialist till another day.
My boyfriend woke me up when he arrived and all I could do is lay in bed for a further 3hrs (till 1.30pm), to exhausted and dizzy (and with a sore throat) to move (I started shaking just to sit up and have a drink). Today thou is my shopping day so I ended up having to get up when I was finally to the point where I felt I could do so without collapsing onto the floor. (I felt like I was going to have another seizure). Boyfriend was good and running back and forth getting me drinks till I was to the point where I could get up (poor thing.. I was so grumpy due to being so not good today).
Anyway.. so we went to the shops (me lethargic still and still slightly dizzy). While there they announced they were going to do free giveaways (one had to be in a certain place at certain time to get them). So boyfriend waits at the spot while I say I cant stand there so I'll keep moving and shopping nearby but come over when they start handing out the giveaways.
The lady finally comes over so I went back and she held up some very nice knives and said everyone would get one each for free.. but yeah there is always a catch. The catch was.. to get one one had to watch a demo thing first... **sigh** of cause there was no where for me to sit at all. So I ask the lady if a chair can be arranged for me as I need to sit or I faint.. but she said no.
So I then asked if my partner could get my free knife for me when he got his (he was going to stand there and watch the demo) and the lady goes "no.. walk away and you yourself dont get one".
Anyway.. I got pissed off as once again due to my disablity and peoples unreasonableness.. I was going to miss out on what everyone else was getting.. just cause I was unable to stand there to watch the whole demo. So I started getting upset.. telling her I didnt think this situation was right. (When I said I couldnt remain standing there, she just turned to me and said "well Im disabled too and manage"...
). So at this point I got very upset and cause a scene with her which caused EVERYONE who had gone to get the freebees to leave as me and her were arguing thou my partner was still there and was going to watch her demo and get his knife. She thou then said she cancelling the demo and my partner couldnt get one either. (This happened in the Strathalbyn woolworths supermarket). and then she said.. "if you dont like it, complain".
So at this point, sick or not.. I WAS going to complain to management.. it wasnt so much about missing out on a nice free knife but more about the whole principle of how she was unfair to the disabled.
So I went to where she pointed to complain (I think she was shocked as she hadnt thought I would) only then to have the supermarket person say to me that it was nothing to do with them.. (me: ah yeah.. well it is in YOUR supermarket who is holding this freebee thing and allowing it to be held here like this in a way which discriminates against disabled).
So after argueing a little with that women about responsibility, my hot headed boyfriend who didnt want me to complain has by now loudly jumped in and telling them it is their responsiblity (yeah.. good on him). At that point the women said she didnt deal with complaints and she'd get the manager. ***sighs.. they made me think she was the manager till that point**
The manager comes out and thank God some decent people do exist... ***by this time Im crouched on floor while having the discussion***... (they didnt give me an appology but they handed me a free knife at this point) and the manager said she'd tell that other to put a chair there so ones who couldnt stand for long had a place to sit. So Victory! (thou it took me a couple of hrs to calm down.. I was all adrenaline and feeling more unwell then earlier).
.........
To top that off today. I read the email my dietitian had sent on my need food plan and in the email it says
"I have found that many people with CFS do better by severly limiting the TV they watch. Do a test.. go without TV for a week and see if your energy levels improve. If the thought of going without TV worries you, it suggests you may be addicted to it, within is an even better reason to go a week without TV. Write down all the troubling thoughts and emotions that arise when you dont have TV to distract you."
and so her mail goes on further in all that line..
I actually was without TV for 9mths and I certainly didnt notice the ME get better (actually it got worst as I was so bored I was then doing things I shouldnt do and overdoing it). All I can say to her email is "GRRRRRRRRRR". I think I'll leave a response to that specialist till another day.
