living with a chronic condition (part 4)

Paparika

well lets hope that your treatment is slightly better too

Former_MSE_Andrea

Hi guys

The thread's been going off topic a bit lately. Could everyone try to keep the thread on topic to help people who're looking for relevant info and advice.

Thank you!

Andrea

kassandra

sammy10 wrote: »

Morning everyone Sorry for worrying you all, I didnt even know I had posted on here. I tend to do odd things before a big seizure. My DH was at the pub but I have an sos setting on my phone where I just press a button and it lets him know I need help so he came home.

I slept most of yesterday and as well as the normal pain that follows a seizure, I managed to hit my head on the coffee table as I fell.

Thank you all for your good wishes.

Hope you are all ok today and cwta hope your dad is feeling better.

Thank the gods that you are ok. I was getting worried about you. I didn't know you could do that with phones.......very clever! I kinda knew you weren't in the right satate of mind by your post. Gald it's over (for now) but you make sure you get some rest.

bigzippy

MSE_Andrea wrote: »

Hi guys

The thread's been going off topic a bit lately. Could everyone try to keep the thread on topic to help people who're looking for relevant info and advice.

Thank you!

Andrea

Sorry Andrea, I know you're just trying to do your job, but I fail to see how we've been going off topic. And I also have the inkling that someone who had a severe/chronic condition like ours would struggle to see it either.

I really don't mean to be harsh, as I'm aware that you've walked into what has already been a contentious issue,:cool: but this thread (in various guises) has been going on for well over a year with no complaints (as far as I'm aware).

There would simply be nobody looking in on this thread to answer any questions that "newbies" might have if there was no banter and general chat about out daily lives (which therefore is how we live with our chronic conditions and is therefore highly relevant and ON topic) to keep the regulars (who are more than willing to answer any questions - providing they themselves are not already having a bad day, due to their various illnesses). If this thread is supposed to be some sort of Q&A session for people who are trying to save money whilst being ill then it would appear that the majority of the posters on here over the last year or more have been in the wrong place and, as such, we wouldn't mind at all if you opened us a chatting thread in the Arms for the regulars of this thread...which I believe is what was asked of Soolin in the first place and resulted in our original thread being unceremoniously shut down.

Again, I really don't want to come across as bolshy, but this thread has been a life-changing, life-saver, for most of us on here and I don't think that many people not intimately involved with situations like ours quite understand what it has meant to us...or, therefore, how upset the upheaval with the thread over the last week or two has been.:(

mesb210776

^ wot she said....
I was just going to put I'm not sure how much more on topic talking about chronic sciatic and the treatment I'm currently and expecting to receive can be. The only thing I can think that might be vaguely off topic is when we got worried about sammy having an epiletic fit.... which is a chronic condition. Can someone let us know exactly what we can and can't talk about? I'm starting to get really frustrated

purplecatlover

bigzippy wrote: »

I really don't mean to be harsh, as I'm aware that you've walked into what has already been a contentious issue,:cool: but this thread (in various guises) has been going on for well over a year with no complaints (as far as I'm aware).

There would simply be nobody looking in on this thread to answer any questions that "newbies" might have if there was no banter and general chat about out daily lives (which therefore is how we live with our chronic conditions and is therefore highly relevant and ON topic) to keep the regulars (who are more than willing to answer any questions - providing they themselves are not already having a bad day, due to their various illnesses). If this thread is supposed to be some sort of Q&A session for people who are trying to save money whilst being ill then it would appear that the majority of the posters on here over the last year or more have been in the wrong place and,

.:(

but that is exactly what they want it to be. your allowed to talk about your illness, but not an accident, that makes your illness worse for a while, because thats not about your illness.
your not allowed to talk about what your doing today, despite the fact that coping with having to do that stuff and knowing that people whoa re listening understand and empathise because its not about your illness. if you stick to money saving then there is even less you are allowed to talk about in here. whats moneysaving about having yet more appointments? unless your fortunate enough to be able to shop around the completely private health care providers and not go near the nhs. so really, appointments, surgeries etc are off topic if you stick to the letter of the rule and there is the health board for those topics.

not allowed to talk about benefits, or trouble claiming them because its not specific to illness and moneysaving, and there is the benefit board for that.

not allowed to talk about problems in your family, children, arguments with other half etc because thats not on topic in this thread and there is the moneysaving in families and relationships board for that.

see a theme? need i go on? nothing i on topic in this thread apart form plain question and answer about specific chronic illnesses.

black_paw

as bizippy says quote : but this thread has been a life-changing, life-saver, for most of us on here and I don't think that many people not intimately involved with situations like ours quite understand what it has meant to us...or, therefore, how upset the upheaval with the thread over the last week or two has been.:(

i check in here to lift my spirits with like minded fellow friends to talk about daily things like not be able to open the milk container ..ect..some one to reach out to and talk on a bad day..the shutting of the previous thread has shocked and frightened people, and made it very stressful to they already stressful lives we have .i have felt losed and alone ....shame on you ..

sammy10

mesb210776 wrote: »

^ wot she said....
I was just going to put I'm not sure how much more on topic talking about chronic sciatic and the treatment I'm currently and expecting to receive can be. The only thing I can think that might be vaguely off topic is when we got worried about sammy having an epiletic fit.... which is a chronic condition. Can someone let us know exactly what we can and can't talk about? I'm starting to get really frustrated

Sorry I seem to cause problems wherever I post.

mesb210776

sammy10 wrote: »

Sorry I seem to cause problems wherever I post.

Sammy I wasn't saying you're causing the problem, the problem is as far as everyone else was concerned we where talking about coping with chronic conditions. To me this means talking about appointments, different treatments, how you're feeling and any specific problems you've had and hopefully managed to overcome.... especially with everyones support on here. But now it looks like we can only ask and answer questions, although we can't give medical advice as we're not trained professionals, so really noone can really answer any questions cos we're not allowed to :mad: Getting really frustrated with this board. Might just go back to doing the comps and not getting involved with the rest of the site. :mad:

sammy10

mesb210776 wrote: »

Sammy I wasn't saying you're causing the problem, the problem is as far as everyone else was concerned we where talking about coping with chronic conditions. To me this means talking about appointments, different treatments, how you're feeling and any specific problems you've had and hopefully managed to overcome.... especially with everyones support on here. But now it looks like we can only ask and answer questions, although we can't give medical advice as we're not trained professionals, so really noone can really answer any questions cos we're not allowed to :mad: Getting really frustrated with this board. Might just go back to doing the comps and not getting involved with the rest of the site. :mad:

Sorry I knjow yuo weren aiming it at me i jus seemm to caues problmes maybe i shoudl sdtop osting