Hi gang…cyber family and friends of mine.
Now then, here
s a poser of a slightly different nature. im asking for your input…
As most here know, i
ve been an avid user of this site for a good while and can be found posting and replying most days. I love coming here..........the posts interest me and I get a huge reward when someone tells me my words have helped them............either with a problem, a concern or just knowing my attempt at humour brightens up someone elses day. It is also well known that I don`t have MS, yet am still a welcome member of the gang!
Being a naturally chatty girl, I sometimes mention the types of stuff we discuss here, to family and friends. If I see the odd post which can get a bit confrontational or uncomfortable, I dont usually add my 2 pennarth, in the hope that the post will eventually dwindle down the pages. What I mean is, I dont let it get me down or upset, so I avoid reading them in full.
Now, the main reason for my post, my hubby, 3 carers and others have voiced their opinion that it is not a good thing for me to be using this site. They think I learn too much about something I dont have…as if coming here is depressing me…it is most definitely NOT. I have explained how much I get from here…I dunno…maybe I am not explaining myself well here…but do you understand me?
ll say I shouldnt tell these outsiders
anything about the site......maybe thats one answer…but why shouldnt I talk about things that interest me?
One of the reasons my hubby dislikes me being on the site, he says, is because I get ideas…which he
d rather I didnt have. He means things like learning about LDN............I tried it some years ago and it didnt help, so I stopped it............the latest is me taking pregabalin...............I learned about it here and am using it to my benefit. Im on 75mg a day and my tum pain has gone! The heel pain has almost gone, except for around 15%, so I am still uncomfortable in bed and am going to ask my GP to increase it slightly. My family say I shouldnt take anymore. When I tell them that 75mg is a very low dose compared to what some of you MSers take…that`s when they worry that I am wanting to follow what MSers do and I am not an MSer. But having said all that, my GP will advise me about increasing the dosage anyway!
Then there is the spc…he reckons I was wrong to go for this, as he disagrees with elective invasive procedures…but it helps us BOTH enormously. If I have any associated pain or whatever and tell him, he doesnt say much, just looks annoyed.
There is a support forum for HSP, which is the nearest the neuros can come up with as regards what is wrong with me…but it isnt terribly chatty…it is an international site, with mostly members who arent english speaking.
If anyone has any thoughts on all this, please share them with me.