living with a chronic condition (part 4)

poohbear59

Hi mouseynousey, welcome. I don't get on here much but it is a great place for support.

basket, I do understand how you are feeling. I agree with all the posts on here. You need to ask for information and help too. I am sorry to hear of your situation.

Careful_with_that_Axe

pooh Oh, I love a roaring fire! I was trying to hang on to the good weather by wearing a tshirt and skirt, but am just about to change into sweats as I'm cold. I'm glad you didn't take what I said the wrong way and hope things improve.

jazabelle

The weather seems to be taking a turn for the freezing, which I don't know about anyone else, but makes my pain levels shoot up.

To be fair though, I hate the heat. Wish I could move to a milder climate! I am being whingey though because I live in the south east where we have the mildest climate in the UK, and the least rain!

I did notice a difference when I was at uni in Kent. I'd never cope in the north!

poohbear59

jazabelle wrote: »

The weather seems to be taking a turn for the freezing, which I don't know about anyone else, but makes my pain levels shoot up.

To be fair though, I hate the heat. Wish I could move to a milder climate! I am being whingey though because I live in the south east where we have the mildest climate in the UK, and the least rain!

I did notice a difference when I was at uni in Kent. I'd never cope in the north!

My pain is much worse today.
I live in the North and when I moved from the South I thought it was great as I can't cope with the heat. Now I can't cope with the slightest chill.. I find if I use throws and pashminas to keep warm in the evenings it saves on making the room too hot for my family.

Ruby_Moon

kassandra wrote: »

I'm so sorry to hear you're going through such a difficult time. Life deals such a poor hand at times and I don't think I can say anything that will make you feel better but we are here to listen whenever you need to vent xxxx


Ah, not checked my E-mail in days. Shall go and do it in a mo.



Oh puurrrlease :rolleyes: Come on now be reasonable. This thread is here for anyone to join and there has never been a bad word as long as I've been here. I'm certainly not going to apologise for becoming friends with the people on this thread. They had all known each other a while when I joined and I did feel a bit on the outside for a while because previous conversations/topics that occured before I joined were being discussed but I was welcomed and it wasn't anybodies fault I felt a little like that, that's just how it is when you meet any group of people! You have to jump in and get involved in things or you will always feel a bit of an outsider but that is your issue. As for being "the in crowd" I find that a huge insult to my intelligence and rather childish. I replied to your post and never included the word welcome but I rather thought that was implied by the answering of your question. Sometimes we are tired/in pain and don't always stand on ceremony but surely you must understand that yourself? I can't speak for anyone else but I just don't have the energy for dealing with negativity. Yes, this is our thread, as in anyone who joins us and part of that support means we can talk about our days. How can you complain about someone telling us she was knocked over :eek: How insensitive!!! Please start over if you feel you can bring positivity and the mutual support that we provide for each other. It is a lifeline for a lot of us and chatting about things is how we go about it. We understand each other and before this thread I felt so isolated because I felt no-one quite understood how I was feeling. If I've had a bad day I can come on here and rant and get loads of positive support which in turn prevents my flare ups, from being upset, from being horrendously bad. We all have enough negativity in our lives from our various illnesses. None of us needs to argue and I certainly don't have the energy.

I thought I was the one being reasonable!
I am as I would be in real life. I wouldnt jump into a circle of women in real life and start off by saying "Hi, Im Ruby and I have x,y and z. What do all you lot have?" I think that THAT is fairly impolite.
It is more my way to say "Excuse me, it seems a bit cliquey but am I ok to join in?"
Maybe wrong of me but thats how I am. I also cannot help feeling that there are several of you in here who have easily taken offence to that and are defending each other left, right and centre instead of just saying "Sure you can join in"!!
Why is it that someone comes along and says I DONT FEEL WELCOME and 80% of you all get defensive about it?
Perhaps these newbies who cant get in have a point.
It isnt JUST me! I have recieved messages from other members who have also said the same thing...that they had tried to "get in" to this thread but were completely ignored or blocked.
I will forward them onto the relevent person.

You say that you need no negativeity and yet thats all you wrote back to me. You could have left it with the pleasant message you did leave. Why add fuel to the fire by joining in and 'blaming' someone else for the unwelcome atmosphere? I would like some support too, do you honestly think you are giving it? You understand what it is like for us all and yet you ridicule?

You also call me insensitive which is far from the truth of it. I have much empathy, sympathy and feeling for so many people in so many ways.
I said that I could not jump into the thread and say "Hello" when the poster was describing her ordeal for exactly that reason. Becasue I AM sensitive. It was hardly the right time.
The point I was making was that there are a lot of 'hardly the right times' in this thread.

Seriouly, do you girls not see how cliquey and 'gang uppy' you may appear to outsiders??
Put everything you have all said and done into a real life situation and you might see how others look on it.

Careful_with_that_Axe

Ruby_Moon wrote: »

It isnt JUST me! I have recieved messages from other members who have also said the same thing...that they had tried to "get in" to this thread but were completely ignored or blocked.
I will forward them onto the relevent person.

You do whatever you feel is necessary.
We shall continue to be a mutually supportive, group of people who have no interest in anyone attempting to disrupt a thread. If you ever choose to post on topic I will respond to you. Until then I won't engage with you again.

Ruby_Moon

Careful_with_that_Axe wrote: »

You do whatever you feel is necessary.
We shall continue to be a mutually supportive, group of people who have no interest in anyone attempting to disrupt a thread. If you ever choose to post on topic I will respond to you. Until then I won't engage with you again.

My first post said I was feeling a bit nervous and a bit left out and you think this is a supportive group?
You are supportive to the ones you know, that is it.
You havent responded to me once on topic either.
Everytime you post a message like this all you are doing is proving my point.
You just cant bring yourself to say "Dont be nervous, how are you?" can you??

ETA. Just checked back to make sure. You ignored my first post completely. There was no welcome of any kind. You only replied to me after I mentioned rudeness.

Ruby_Moon

jazabelle wrote: »

The weather seems to be taking a turn for the freezing, which I don't know about anyone else, but makes my pain levels shoot up.

To be fair though, I hate the heat. Wish I could move to a milder climate! I am being whingey though because I live in the south east where we have the mildest climate in the UK, and the least rain!

I did notice a difference when I was at uni in Kent. I'd never cope in the north!

Its as though there is no happy medium with the weather.
Too hot and it makes the conditions worse.
Too cold and it makes the conditions worse.
It would be nice if it were like today everyday.

sammy10

Ruby_Moon wrote: »

You are supportive to the ones you know, that is it.

Im new and they dont know me but have been supportive to me.

As I said before you do come across as quite aggressive, maybe that hasnt helped.

jazabelle

It is really difficult jumping in when you don't know people. I got some really warm welcomes and nice responses to my introduction post, but then when I joined in once more, I didn't get a single response.

I realise it's difficult for you all as well, you know each other, know each other’s history so of course you're naturally going to be talking to each other, but it is difficult for new people.

Perhaps we should have something of a fresh slate - introduce ourselves, maybe where we're from, and what conditions we have? I'm sure you've all done it a million times, but would help to find common ground? I would love to find out there are people near me with similar conditions and what help they've found from their doctors, etc.

For example I'm finding it really difficult to find an organisation near me to help me fill out the disability living allowance forms. I've tried DIAL, CAB, Disability Essex and Essex Disabled People's Association with no luck. Obviously I'm in Essex, Colchester to be exact, and everywhere seems to be an hour away or more that. If there is anyone near me - do you know anywhere that could help?

As for my chronic conditions, I have Fibromyalgia, Hypermobility, Chronic Fatigue, Metatarsalgia, Asthma and flat feet!