Forum

Because it matters

As some of you may be aware, I’ve been having a break from the forums. What most of you probably aren’t aware of is that it because of the Limbo forum (now renamed New Diagnosis and Before Diagnosis).

I hope you will bear with me because this might be long, but I have a very important request to make of you all.

I first started posting on EL about 2 years ago when my MS decided to up its game and I had to give up my job completely. Soon after, I came across Limbo and saw loads of questions, but not very many answers. So I started trying to help. Over these past 2 years, this “helping” grew to become, in effect, a job: answering virtually every post and loads of private messages every day. Then, about 10 days ago, someone picked a fight and I fell for it, hook, line and sinker. Whatever their motivation, it was a long overdue wake-up call for me and I decided to have a break and work out whether or not I should even be on there.

I’ve been talking to friends about the whole thing, one of whom said “it doesn’t matter” [if I’m on there or not]. The thing is, it does. It matters for a lot of reasons.

It matters because I remember what it was like waking up one morning and wondering wtf was happening to my body.

It matters because I remember telling the nurse in A&E that I’d recently had a lumbar puncture because of suspected MS and her looking at me in disgust, sneering at me that lumbar punctures were for meningitis and then flouncing out, leaving me there without any help for hours.

It matters because I remember crying my heart out in the hospital car park after seeing the consultant.

It matters because I remember being utterly terrified of the future: of wheelchairs and incontinence, of my husband perhaps not staying, of having to give up my career and my hobbies, of not being there for my children.

It matters because I remember being in dire need of help for pain and fatigue, but my neuro being worse than useless and there being no one else to give me any advice.

It matters because I remember being utterly bewildered and lost and lonely, but having no one to talk to. There being no one to tell me, “Hey! I’ve got it too. It’ll be OK.”

It matters because Limbo is full of people going through things just like that; just like the things that you went through and are still going through too. Most of these people don’t have MS nurses or friends with MS. All they have is the forum. And if there are no experienced MSers on there, who will tell them that it will be OK? Who will explain what to do when their GP tells them it’s all in their head? Who will make suggestions about how to deal with symptoms? Who will explain what the letters and test results mean? Who will tell them the practical things about DLA and Wheelchair Services and physio, etc?

I know more than most people on here about MRI and the brain. I do not know more than most people on here about the rest. I’ve been doing my best, but it’s too much. I can’t do it any more.

Please, please, please spend a bit of time on Limbo as well as on EL? Please help me, and the few other experienced MSers who go on there? We can’t do it alone. And it matters. It really does.

Karen x

I will.

Pat x

Nice to see you back, Karen. I take a look in Limboland now and again, but rarely post these days - thanks for the reminder that fully paid-up MSers can usefully put in an appearance over there.

Alison

x

Hi Karen,

You’ve just made me realise that we all should visit limboland - or tell limboland people to come and visit us too.

This site has been a huge help to me.Didn’t know it existed until about 10 years after diagnosos.

I’m sure everyone appreciates your help and advise.

Keep going - Jen x

Hi Karen, so sorry to hear how upset you are, simply through trying to help people.

I do go on Newly Diagnosed/Undiagnosed whenever I log on to the site.

I know how those newbies/undiagnosed feel, `cos i am one of them myself. have been for a long time now.

it is heartening when people tell me I have helped them with a particular pain, concern, whatever.

They say the same to you, I know.

It`s like that old song goes;

If I can help somebody.....etc

Bless you, Karen.

luv Pollx

-Lovely people like you shouldnt have to explain anything, but you have so eloquently. I would add too that you are equally vulnerable, being an ms sufferer, so dont need any aggro!

May I join the many who thank you, love you and care about how your feeling as you do for others.

I too shall try share the load, because together we are strong.

Lots of luv

bren

x

Hi Karen,

So sorry you have been upset. I, for one, have been very grateful reading your responses to posts and have learnt a lot from them.

I only wish that this site, and you with your wealth of knowledge, had been available some 30 years ago, when I was dx, my fears would have been alleviated, I am sure.

Take care

Pam x

Hi Karen

I think you are wonderful and yes it does matter and I will also start to revisit there too. I used to post a lot on there trying to ease worries for people by letting them know that life can still be good even with MS,but had to stop for a while as I tend to take on peoples worries and it affects me so.

But I still want to help.

I’m not sure why the other poster put you through a hard time but even though it has obviously hurt you try to take it with a pinch of salt and forgive their nonsense. You deserve praise not lambarding.

I’m pleased to see you back as you share some wonderful knowledge.

So chin up and forward and upwards.

(((((((((BIG HUGE HUGS))))))))) coming your way

:-)))) Mary

Hi Karen

Sorry you have been upsent recently, what you do is brilliant and you do deserve a break for yourself. I take a look at the undiagnosed site and make a comment if I can but often I don’t have the knowledge and so don’t offer advice. I know too well how difficult it must be for people who can’t get a dx. My brother’s friend is in this predicament and I can’t honestly say why he cannot get a diagnosis when I go one fairly easily. I will try and look at it more often in future.

Don’t forget the MS helpline as I have recently learned, where people who offer support can call up and offload when they need to.

Take care

Wendyxx

Hi Karen,

Thank you for a much needed nudge.

I never go on newly diagnosed as I felt that I had nothing to offer but you have reminded me that I do. I can tell people about benefits even if I can’t get down and dirty with their symptoms (which are at the forefront of people’s minds in the beginning)

I’m so sorry that you’ve been upset and I hope that a break will give you chance to come back to us in a while. I really miss that pretty pink ballerina!

Jane

Ditto to all of the above Karen. You are a treasure on these Boards and just wish you had been around when I first joined and was going through te horrors of being diagnosed, undiagnosed over and over…

Take a break, you deserve a holiday and see you back here all refreshed when you are ready xxx

B

Hi Karen,

I have missed you.

Seem to remember the post that got a bit heated,and can understand it took it out of you,but you where right.

My only problem with it is that it went on to long,when the other person had no answers to your points.

A lot of the posts went right over my head,lots of information that i could not understand.[not your fault my fussy brain]

Because it matters,that people are not giving the right information,and if it was not for people like you they would be in limbo,and scared.

Will try and visit limboland some more.

So hope to see your posts back soon.

Take Care.

Chris.

Hi Karen

I just want to say a massive, massive THANK YOU KAREN - you are an angel. I am one of the people you have helped (on more than one occasions!) in limboland. I try to visit EL as much as possible to try to gain more info. I know we can’t always find the answers, but at least we should try as much as possible to understand. It cuts both ways, I think.

Anyway, you are an absolute inspiration and a wonderful, wonderful person. Thank you soooooo much Karen.

Ness46 xxxxxxxxx

hi karen

just want to repeat everything said here…

thanks for all the help in the last 18 months from first symptoms to my dx last month

take care

barry

Hi Karen

I agree with everyone, we have missed you , you really make a difference.

Best wishes, Amy

Just wanted to echo the above posts-I have found your posts so informative and really admire the way you have answered peoples concerns in a reassuring and easy to understand way. So sorry that you have been upset by someone.

Hoping you will return to the forums after your break, you are very valued.

Best wishes

Cathy

Hi Karen

I agree with everything that has been said. Enjoy your well deserved rest and come back when you are ready. We all miss you and your comforting posts. These boards would not be the same without you.

Carol

Hi Karen

I agree with all you say it really does matter and I can remember my time in Limbo and people like you really helped when the professionals baffelled me with science. I take my hat off to you and will spend more time trying to help people.

Sue

Hi Karen,

There’s nothing else I can add except you are missed and valued, now please wipe the tears and smile as we all care about you. Have your rest but please come back when you’re ready.

Take very good care of yourself.

Sending ((((((HUGS)))))) to an

Janet

xx

Thank you everyone.

I really didn’t intend this to be about me though so please, no more in that vein!

I do hope to see lots of you on Limbo though, once I get back in action

Karen x