Forum

what can I say?

Hi gang…cyber family and friends of mine.

Now then, heres a poser of a slightly different nature. im asking for your input…

As most here know, ive 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?

Perhaps youll 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 hed 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.

luv Pollx

Poll,

We all value your words of wisdom and don’t want you to go. And as for what you learn on here I think you are a sensible enough woman not to believe everything you hear. A GP cannot know everything that is going on and you may come up with soemthing he has never heard of. I know you will research things yourself but you know your body best.

We would miss you hun if you went away from us.

JBK xxx

Hi, I am NOT leaving this site. They cant make me neither!

I was looking for some pearls of wisdom so that I may use them, when i am next told not to come here.

Your words are lovely and that`s just the kind of thing that makes me love this site very much. Bless you.

luv Pollx

Aunty Poll

I love love love your posts. You are an inspiration to people and you have so much good advice for us all. So what if you don’t have MS, your HSP is so MS like that you have very valuable insite.

When this thread has all the comments I know it is going to get, you send your carers and hubby the link. I think you will find they back down pretty damn quickly!! lol

Big hugs. Angela xx

I dunno Poll, I think the key thing is that you can get some ideas from this site but that’s not saying that you are automatically going to act upon them. You know that you would always need to consult your GP about any medication and I’m sure he/she would not automatically give you them if he/she didn’t think they were worth trying. I’m not sure why your family and friends are discouraging you to use the site, can they not see that some of your pain and discomfort has improved by trying out medication which other people use on here? It concerns me that they are thinking that it is depressing you. Are they seeing some signs which you are not aware of? Of course I get it that they are naturally worried about any pain you have, nobody likes to see their loved ones in pain. Do you think your family feels sort of at a loss because they can’t come up with any of the suggestions that people on here can? This is probably going to come out the wrong way but maybe hubby feels a bit inferior, I remember you saying that he was opposed to any outside help because it was " his job to do things ". I think it’s good for you to be on here as it’s something you enjoy doing and we all know you’re a sensible, down to earth gal who is quite capable of making your own well informed decisions about what is best for you. There’s a heck of a lot of people who would miss you on here.

Dear Poll,

What would we do without you - OK most of us have MS - some still awaiting diagnosis - some of us could well be ‘misdiagnosed’ like you were - we shall have to wait and see. As for meds - well nearly all the meds we take are not specific to ms - they are for all sorts of diseases. Mainly, Parkinsons/Epilepsy//Bi-polar/ Uncle Tom Cobley and all. Even the vets prescribe some of the meds we are on!!! /Gabapentin being one of them. After seeing the effect it had on my dear old Bruno - l would never recommend it to anyone.

As for SPC - thats another that is certainly not specific to MS - it is for anyone who finds it difficult to get to and on a loo. Wheelchair users especially. [Some Para-olympic athletes have a SPC - and many use a Peristeen for their bowels]

LDN - is recommended and used for many illnesses. And even for dogs with cancer -as l found out when Bruno was so ill.

The one and only all encompassing thing is we all need the help and compassion that people like you give. A listening ear and a warm heart. Never - as you say confrontational.

And l do hope we - thats the Royal We - meaning all of us on this forum - or as Wb says Boreds give you back all that you deserve and are of help to you. Just don’t tell the family!!! Lets us be your ‘guilty secret’.

Dear Poll, my feeling is that this forum is a place for you to do valuable work that is important in the big scheme of things. You give such a lot to others, despite (and ultimately because of) a difficult life experience. I suggest asking those around you to read this thread. Hopefully they will realise that you are helping so many others as well as educating yourself in order to help yourself. This can only be commended! It is a rare soul who reaches out to help others when they themselves are in great need of help. This is my first post on this part of the forum as I am new to limboland but I just had to pop over here to support you as you reached out to me. :heart:

What a lovely post Reikiblossom - Poll will be in tears. Can you send her some Reiki blessing.

Welcome to you.

dearest poll

don’t go, don’t go, don’t go, don’t go, don’t go, don’t go, DO NOT GO.

please stay here with us.

make us laugh, pick us up when we are down.

just keep on being our poll

carole xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi Poll I dont comment on very many posts that either you or others write but there’s one thing for sure you certainley brighten up my days with your tales. I used the forum many many years ago but my hubby/family were very much like yours even said at one point I was obsessive with the site, however he’s now my ex and my now hubby encourages me to use the site if for nothing else but to make friends. Even if you dont have a diagnosis of MS you do have HSP which has a very simillar likeness. The other thing is not everyone posts regarding MS some just want a friendly hug or moral support and guaranteed your always there to give it. Sue x

OK, Poll, one suggestion:

Ask them how they would replace your social life if you give up the forum. Because, this has gotten to be your social life.

Then, point out to them, slowly and clearly, that this is the one place where you can interact with other people with similar problems to yourself, without any other considerations having an influence. This is the place where you can draw on your experience to help others. And, I guess that everyone here will say that this is where you belong. It would surely not be the same place without you (and you can read that as my personal Please Don’t Go).

Geoff

Poll, I would echo Geoff - this place for many is a social life. It’s where friends are, people you can chat to without having to explain about a particular condition, exchange experiences, support, advice, anecdotes, jokes, discussions about anything and everything… and much more. How exactly would they replace that? Having created a niche for yourself, what would you do if it was suddenly taken away? That would be cruel and heartless.

It’s not all about the drugs and symptoms, and even so, the drugs many people use aren’t just for MS so the information here can be just as relevant for other conditions. But do they think that’s all that goes on here Poll? That it’s just about MS? Or that you can’t make an informed decision for yourself and that you’re so easily influenced?

I know what I would say if it was me, and it wouldn’t be polite!

Poll, where do I start? words that make me think of you - warm, caring, empathetic, pragmatic, maternal, sisterly, understanding, practical and so very very funny. You are the queen of limboland and when I get frustrated I think of you and try to just manage the symptoms and have some grace. it’s a bit late in the day for you to trade in the husband but I would not be happy with the carers having an input. It’s sod all to do with them, we love you and do not want to be without you. You also make me pee my pants with laughter and I will never stop asking you to write a book of your adventures into short stories for the disabled. I hope you are going nowhere!!!

Poll as you know I dont have MS but it is the closest thing to what I have got and I do get really good tips from people on the site. I also enjoy the site and am only on when hubby is not around because he just doesnt “get it!” Why does he “not get it” because he does not have any problems. You give a great contribution on here and none of us want to lose you.

Why are they asking you to stop when you clearly enjoy it, are getting good tips and are also helping others.

My advise is just ignore.

Love Moyna xxx

Hi Poll,

I almost replied: “It’s none of their business!”, but then realised it IS their business, because they care about you. Perhaps they view it as an “unhealthy” preoccupation? But even then, it does not give them the right to decide how you should or shouldn’t spend your time. As far as I can tell, you engage in plenty of other activities - you’re not letting it take over your life - so I don’t see that it would be “unhealthy” in that way.

It doesn’t seem to be making you depressed - and you should know - but I wonder if your nearest and dearest see things that wouldn’t be obvious to us here - some not-so-positive effects? I’m not saying that IS the case - I trust you do know your own feelings. I just wonder if they’ve witnessed something perhaps even you don’t always realise - that you’ve come away from it grumpy, or something?

This website is open to all-comers, but I must admit I occasionally see a post from someone who isn’t being investigated for MS, symptoms aren’t strongly suggestive, and in all probability nothing serious. In those cases, I sometimes wonder: “Why oh why are you torturing yourself, obsessing about a serious illness it’s very unlikely you have?” Where it’s fuelling someone’s excessive or irrational anxieties like that, I do feel it can be an unhealthy place for them to hang out.

BUT, your case is not like that. You know (at long last) that you don’t have MS, so you’re not morbidly fixated on the idea you might. But you DO have a condition with enough in common that you and MSers can mutually relate, and also much of the practical advice would be good for both/either.

I don’t think that is unhealthy or dangerous. There’s very little chance of you being prescribed something inappropriate because you saw it on an MS website. Doctors are not silly enough to prescribe you things just because they’ve worked with MS. But there’s enough overlap that some of the treatments will overlap too. Just because something is most commonly prescribed for MS doesn’t mean it can’t be effective for anything else! Similar problems may well have similar solutions.

Finally, as you’ve been using the site for years, and this only seems to have become an issue lately, I wonder if it’s all a bit of a reaction to the SPC? Things haven’t been exactly plain sailing with that, so I wonder if folks (especially Hubby) are regretting you had it done, and finding it easy to blame the forum for giving you the idea? Again, I don’t think doctors just act on anything the patient wants, without giving careful consideration to the appropriateness. SPCs aren’t fitted on demand, so you must have been a suitable candidate. It’s not some “mad idea” you got from a forum, otherwise they wouldn’t have done it. But perhaps Hubby’s just disappointed with the way it’s gone, and casting around for someone or something to blame?

Tina

x

Hiya Pol,

Your husband obviously loves and cares about you, so do the other people who help you out otherwise they wouldn’t say anything. So in my eye’s they are just expressing concerns for you, which anyone who loves someone will go out of their way to do.

I dont know much about your condition, and to be fair I dont know a fat lot about mine. What I do know is that on line forums do a job no doctor, nurse or other well meaning person can. They give none bias, friendly and anon support to people, it’s a place where we can bounce our frustrations, and concerns and a place where we can be there for each other even if it’s with some kind words or tell our own experiences to someone who can relate to the way we feel.

I am in no doubt that you are an intelligent lady from what you say in this post your not going to take medications or under go any surgery without doing the research first. Your husband and family no matter how well meaning they are must know already your not just listerning to a whole lot of people who have ms and that your making an informed choice, and part of that is listerning to other peoples experiences. You dont buy a £1000 tv without first reading the reviews.

If all else fails show him all of these post asking you not to leave and thanking you for all of your valuable advice and kind words. Cause they seem to be stacking up

Jo xxx

Hi Poll As you know - because you have replied to me- I am only young and a newbie to all of this. You have helped me greatly and always seem so upbeat despite facing adversity. I hope I am given the courage to face what may lie ahead with the same strength and determination as you do. The relationship between the people on this forum is reciprocal. We seem to try to help one another with nobody taking too much or giving too much of themselves. If it wasn’t for the forum and people like you I don’t know where I would be right now. I am in a very dark place with a lot going on over the past few months but when i come here my symptoms don’t seem so odd and people understand me. MS or no MS neurological diseases are all similar. They rob us of so much but make us see the world in a different (and at times more positive) way. I hope you family and carers can see this… Love Lilly xxx

Pol, you’ve said it yourself. You’re not leaving this site and they can’t make you! We love you, you love us. What’s more to say? Xxx

Hi Poll

I’m jumping happily onto THIS bandwagon - Don’t go Poll!!!

There are lots of people that use this forum when they have a query or a fear and someimes just the once. For the likes of me that are still coming to terms with this MS nonsense, we need people about that have experienced the good, the bad and the ugly of diagnosis, freaky symptoms & medicines etc. etc. The point, is to the community of regular posters, you’re part and parcel of that… I was gonna say part of the furniture but that sounds a bit wrong (I hope you know what I mean!).

You may not have MS but share a lot in common with a lot of people that do, and clearly your issues are not disimilar given your previous incorrect Dx. And having gone through what you’ve gone thru, you understand better than most what it’s like putting your health into the hands of others, especially when your body is throwing a hissy fit and ignoring what it’s supposed to do, or even doing the complete opposite of what you’re asking of it!

I for one appreciate your honesty and believe you’re no fool, so I don’t see ANY reason why you shouldn’t be here.

As for depressing, well seriously, I think that your life is probably pretty difficult but you get on with it and have a giggle here, I think even or occasions you’re having a moan, you do it in a humorous way - I think that’s just one aspect of why so many of us find this forum helps us keep a grip on things!

So, keep calm and carry on! :wink:

Sonia xxx

Hi Poll -

I know you that don’t have MS but your situation is so similar that I don’t think its at all odd that you use this forum x And one of the things I would like to add is that your posts have made me approach my own situation much more positively and with less fear x

As a newbie to it all, it has all been a bit overwhelming for me at times. Like many other newbies, I have experienced moments of total panic and fear. ‘What if’ questions often go through my mind… ‘what if I should develop certain problems?’… 'How would I cope?" etc. And then I see your posts, and I see that you do have those problems, and obviously they have a huge impact on your life, BUT - you approach it all with such a matter-of-fact “I just have to deal with it as best I can” sort of attitude, and you have such humour… you have no idea what a positive impact that has on people in my situation.

So no - we on the forum don’t want you to leave.

I am not sure why your husband would want this. Maybe, like others have suggested, he has picked up on things that you are not aware of (like maybe you may at times have seemed upset by the forum), or maybe he is looking for someone / something to blame for your current situation; I don’t know the answer. But it does seem to me that he is trying to look out for you - so maybe talk it through some more with him - not necessarily so that you can act on his suggestion - but maybe so that you can start to work out where he is coming from.

xxx