Lonely

I am right there with you my dear.. I am in exactly the same position as you.
I have been feeling so lonely too, and my lack of energy (and lack of money! Being as I can't work right now) is really getting me down, making me feel like this summer is going on by without me. It has been rare lately that I have gone even just a day without crying, and now I have a nasty cold on top of my other symptoms!

We CAN make it through though. Don't you doubt that.
We are still here, we still have the capacity to enjoy so very much of life. I assure you.
Sending so much love to you. <3  

It's good to know its not just me feels like this. Your replies have made me cry but only because they are so nice.
I just can't see an end to it all and it scares me so much. My house is a tip because I don't have the energy or the balance and I'm constantly in pain.

Hello Anon,

Please believe me, you are NOT pathetic and you are definitely among like-minded friends here so you have come to the best place. This forum has been invaluable to me over the last year and I truly don't know what I would have done without it.

Limboland is hell. Like most people, I never knew MS limboland even existed and once you're in the 'system' and told to hang around and wait and then wait some more, it can be incredibly difficult to cope with. So much so that life can seem to be put on hold, or at least it was for me. I don't know how far along the diagnostic route you are, but if you have any questions (I had LOADS!!), come back here, offload, yell, rage, etc and there will be so many people supporting you.

Please don't feel so alone when we're all here!

Choochyx

 I saw someone else post yesterday saying   have you ever seen a headstone saying  I wish I'd done more housework!!!

I suspect not.

I agree limbo is an awful place where you often end up doubting yourself,and as you say no one understands. WE DO.

Its not pathetic at all and even diagnosed people get down when we feel rubbish but there is no obvious sign. With a dx at least we know for sure why its happening.

Coming on here is a good way to vent your feelings as an emotional release but as others have said,go to your gp for appropriate pain relief as pain can really drain you. Be specific with what the pain is like so if its nerve related he can give you effective meds for that kind of pain.

Equally if the bladder issues are impacting on daily living tell your gp,there are masses of things they can do to help you.

All the best Pip

Thank you for the support, I know I should post with my real name but I hate feeling like this and am embarrassed.
I have been to the GP but he told me it was just stress and to take paracetamol and ibuprofen which doesn't touch it.
I'm already on antidepressants for an unrelated thing but don't like taking them.
Life just feels to hard at the moment.

Hi anon,

As posters have already said , you are not alone with your feelings. I feel 'alone' everyday, my GP is not very sympathetic, and I feel that no-one really understands how I feel. I've had to really push myself on somedays to even 'function' otherwise I'd stay in bed all day, really felt like that this  morning actually. On most days I really don't feel like going out anywhere...the thing Is I used to be so active, I would never sit still, I would always be ' on the go' doing one thing or another...which Is why feeling like this Is such a contrast.

Hopefully, these feelings will pass, just realise that there are a lot of people who feel the same as you, If that helps at all. You can always message me, and I will be there and try and help.

Hope you feel better soon,

Wendyx

Hey sweetie! you are so not alone - hugs from me too xxxjenxxx

hi anon 

the pain your describing is probably neuropathic pain and ibuprofen won't help ask gp or nurse to try you on gabapentin or something similar for neuro pain

hopefully they will help 

tc

baz

Dear Anon,

I just wanted to add to the others posts before me, You are definately not alone and just reading your post and others tonight has given me the strength to know I am not alone either!

Today I left work early after battling through yet another day, another day where i woke feeling as sick as when i went to bed... Im exhausted in pain and feeling so sick dizzy and faint I thought I would die. I collapsed on my bed, after struggling to it and just cried, but cried softly as i didnt have the energy to really release my emotions... thats when you know your knackered - hey!, and asked god to just take me now! as Im so tired, sick and tired of trying to be normal and cope when all the time I feel so unwell, and in saying unwell I am seriously understating just how bad I feel, its relentless and living this limbo hell is a nightmare. I too take ibroprofen and paracetamol that just doesnt work but i take them anyway as i have nothing else. Im lucky I have 3 fabulous children to carry on for... Please dont feel alone you have insipired me to write down my feelings and i feel better for that, I hope you feel stronger for doing so too! I know there are many more people that have it far harder than me and I keep thinking I shouldnt complain as it could be far worse but sometimes we just need to accept it when things get too much we should say how we really feel!! otherwise we just gonna go completely mad.

i hope you feel some relife soon x

Chelle - these words struck such a chord with me this morning! To be honest I realised that I've been feeling like that for the last few years - some times are worse than others but never 'well' - constantly hoping to improve as you feel you can't cope with or take anymore - but instead you just feel like you are getting worse & worse!

It's so familiar - not just for me but for so many of us on here xx I so wish I had answers - a magic wand that gives a huge blast of 'wellness' to everone - all I can say is hang on in there - you have to believe that you will get there in the end xxxjenxxxx

Hey Jen & Anon,

Well I made it through the day today and even though Im completely knackered now im at home... at least i made it! I definately won today and its those small gains for me that make it all worth while...

Thanks for your words Jen, we will make it! we have to and Im not going to give up without a fight x Keep strong guys x

Dear Anon

You did absolutely the right thing. With my last up heaval of symptoms over doing it just didn't help. I ended up cancelling on an outing I'd organised months before with a friend. Something I had really wanted to to as I don't see enough of her. My friend was miffed but said she understood as my health had to come first.

That's what friends should be like - you shouldn't be made to feel bad. I don't know how much your friends know or understand what you're going through, but the ones that matter will come round and understand. If they don't they're not a friend worth having.

The symptoms we experience aren't just like the common cold they're much worse and in some cases could impact us severely. Don't ever feel guilty about putting your health first. I did even though my partner was telling me to go and I knew I'd be letting my friend down.

Reemz

X

Hi Anon

Yes, I gave up fighting for many years from 1986 to 2000 as I was not getting anywhere at all.  I never even knew about MS or limboland then or that there actually really was something causing me to feel crap all these years.  I gave up because I went to the GP for years and all he did was keep sending me for a blood test which always came back perfect.

So, I learnt to live with things and adapt, but my marriage went as a result.  Then, five years ago all the weird symptoms came back with a vengeance and all at once, together with new symptoms.  So, I started fighting again and have got further this time, although still undiagnosed and probably not likely to be.  However, I will not stop now.  I'm so bloody determined to prove that there is something destroying my body I will not give up, although it's so, so hard when I feel drained and exhausted.  Sometimes I can't even hold my own body up, I just flop like one of those children's toys.  

But I will not give up now, it's gone on too long.  I've also told my children that if I die undiagnosed I want a post mortem so that a diagnosis can still be establised posthumously.  Not that I'm planning to go anywhere anytime soon!  

Limboland is the most isolating place to be as family and friends just don't get it.  

This site is wonderful and I'm so glad I found this website (can't even remember how I ever got here actually but so glad I did).  Everyone on here understands and will support you.  I have found it reassuring every time I've had a weird symptom or remembered something strange that happened to me I have looked on here and every time I have found someone else who has experience the same thing, and that give me some comfort on this lonely journey.

Please try and stay resolute, don't give up.  Wait till you feel stronger before you fight on but keep the thought in your head.  I really hope you start to feel stronger soon.  With all my best wishes Dianne x

You're definitely not alone, I'm also stuck in limboland, feel terrible all the time and like everything is getting on top of me.

It's hard to get support etc from others when you don't have an official diagnosis and you just feel so alone and overwelmed.

(hugs) Please feel free to message me if you want to chat :)

Hi Anon

I empathise with you. The feeling of being all alone when you are in a crowd, crying because you feel no one understands. We have all been there regardless of being part of a family, or being single, being female or male (they cry alone, as real men don't cry- that's cr**) I still do when I tell what my condition is. Chose the word condition as better then 'what up' - that the sky.
Coming to terms with this you need all the support and help and there are friends here you can talk to.

Take care

Mike