living with a chronic condition (part 4)

arealbasketcase

Thanks Jojo, my OH is brill and really understanding, we have those little bottles of hand steraliser everywhere - in the car, in the bathroom, in the kitchen - I'm beginning to feel a bit like Howard Hughes (it was him who was paranoid about shaking hands wasn't it?).

Thanks for the kind wishes Sammy, really sorry to hear about your seizures, I wish I could offer advice but instead I'll send you a hug and let all these good people help you out.

Jojo_the_Tightfisted

I worked at the marsden lung unit for a while - call your mum's consultant's clinical secretary in the morning and find out 1) if you can make an appointment to see him/her to discuss things and 2) the details of the macmillan nurse on the team. They are wonderful for family as well as patients.

It's not a kind disease, but they do everything they can to help, even if it is quite far gone, when the palliative care consultant should be involved.

You just call the hospital and ask for the consultant's secretary - honestly, it's that easy.

Oh, and do the hot water and soap thing before the gels, as some bacteria are helpless against soap and water, but resist gels - e. coli. being one of them.

Ruby_Moon

Careful_with_that_Axe wrote: »

I'm sorry you feel that way. I think it's the same with every thread that it feels like walking into a room full of strangers, but you aren't going to know people unless you try. I'm not sure why people talking about their days bothers you as we are talking about living with chronic conditons and how they affect everything we do.
Perhaps if you feel so strongly this isn't the thread for you and you may find a different one suits you better?

Again, to show the point I make, you question me being here! Do you honestly think that that would make me feel welcome? You aren't able to say "No need to feel nervous, Welcome"?
I say that someone was rude and it certainly feels that you run to your friends defence, otherwise you may have been more welcoming.
There are a few messages that talk about conditions and the like and then it wanders off onto all manner of things that are not easy to break into.
The message structure too is all about replying to each other personally which puts people like me on the outside to start with.
I am not bothered about your conversation topics, just that I am finding it difficult to get a foot in the door, so to speak.
My first post said that.
Your first post to me confirmed it!

sammy10

Ruby_Moon wrote: »

Which arguement are you referring to?
I also didn't say I found the thread unfriendly, just difficult to join in.
As I say, it would seem that my friend and also myself are right. If you are not part of the "in crowd" you are made to feel unwelcome. I am not a confident person. I followed the chatter adn the more cliquey it seemed, the harder it was to start anything.
I felt it wasnt appropriate to mention any condition, for example, when there was a lot of talk about unrelated stuff, like when someone was knocked over.
When I did pluck up some courage and tentatively asked if it was ok to post several people answer, not with a welcome, but with rude messages that seem to be saying "This is our thread" It is honestly how you have made me feel.

Im not a confident person either and have been reading this thread for a while before deciding to take the plunge. I was worried about the cliquey thing and not being part of the in crowd but I can honestly say I felt welcomed here. People were very nice to me.
Your original post did seem a bit aggressive but thats the problem with writing something down, its hard to read how things are actually being said. Hope you know what I mean.
Why not just start again and go with the flow;)

sammy10

The other thing I forgot to say (Eppy brain:rolleyes:) most conversations go off on a tangent, Im like Billy Connelly usually I go off on to something else but get back to the original topic eventually:D

arealbasketcase

Jojo, my mum gave me a letter today from her consultant and I am going to ring tomorrow, mum has been treated once already, she had a lobectomy last year. A couple of weeks ago she went for her second check up and they organised a PET scan 'cos she is so much pain. Yesterday she received a letter talking about stuff I've never heard of, honestly I can't tie a bandage, medical stuff is right out of my comfort zone.

My mum on the other hand has worked in the care field for over 30 years and knows her stuff, she understands it only too well. If I said "invasion of the mediastinum and the chest wall" I'm guessing you'd know how serious that is.

My mum is such a strong, intelligent and resourceful woman. To see her today, totally distraught, is really hard - but nothing as to what she is going through. My dad, bless him, just doesn't know what to do for the best.

How much do you think they will tell me, they can't breach confidentiality but I do feel I need to know more if I am going to be of any use to my mum.

Ruby_Moon

sammy10 wrote: »

Im not a confident person either and have been reading this thread for a while before deciding to take the plunge. I was worried about the cliquey thing and not being part of the in crowd but I can honestly say I felt welcomed here. People were very nice to me.
Your original post did seem a bit aggressive but thats the problem with writing something down, its hard to read how things are actually being said. Hope you know what I mean.
Why not just start again and go with the flow;)

I understand what youre saying
I also would have thought that was thetre a thread where people would be more generous in their nature it would be a thread about disbilities. For all the talk about confusion, moods and fog I would have though there was some more forgiving if things are not explained quite as good as they perhaps should be.
Glad that you feel welcome though, its helpful for you.

Jojo_the_Tightfisted

Whoa guys, just chill! Ruby, it's OK, axey can confirm that I'm just a stray who has wafted in here from the beauty threads - I could have taken one of my first replies to heart, but there'd be no point in that.

Now, would you like to start again and introduce yourself? I'm Jojo, I have various thingies wrong, and if I were a horse, I would have been meowmix long ago. I talk too much and type ridiculously fast. I can annoy people but I am never intentionally nasty (contradictions invited - here: ). I would probably be best suited to a magic roundabout Dylan avatar - but I haven't been able to find one yet.

What about you?

arealbasketcase

Jojo_the_Tightfisted wrote: »

Whoa guys, just chill! Ruby, it's OK, axey can confirm that I'm just a stray who has wafted in here from the beauty threads - I could have taken one of my first replies to heart, but there'd be no point in that.

Now, would you like to start again and introduce yourself? I'm Jojo, I have various thingies wrong, and if I were a horse, I would have been meowmix long ago. I talk too much and type ridiculously fast. I can annoy people but I am never intentionally nasty (contradictions invited - here: ). I would probably be best suited to a magic roundabout Dylan avatar - but I haven't been able to find one yet.

What about you?

My username says it all, I'm as mad as a hatter, I do stupid things because I don't think them through, immediately regret them and then find out it's too late to put things right.

I'm a vegetarian, who won't/can't kill a fly, I have two wonderful rescue cats (although one is nearly as ill as my mother). I speak several languages fluently, and can swear in several others.

Other than than I am totally normal, honetly I am;).

mouseymousey99

I haven't really introduced myself either (and I first posted tonight too). I'm in quite a lot of pain tonight and I know from experience its not the best time to do lighthearted. So, I hope you don't mind I'll do that later on.


Re the drinking on tablets - mmmm - basically I can't! Any more than one glass of wine & I'm sick. The meds though are not a short term thing - they are part of my (& I think quite a lot of you good folks here life). Yes they do say don't drink when you are taking them - but I do like a glass of wine, about every other day. Sorry but I have had to give up so much else, one glass of Pinot Grigio isn't going to do a lot more damage.

I'm reading from the start - so I'll say goodnight for now
Mx