I'm sorry for posting so much, i feel so rubbish :-(

you know when you think you are coping, then realise that you’re not? its not that my symptoms have got dramatically worse, on about my 6th or 7th week of vit d and id say there has been a 2 percent overall increase in my well being, which is of course something to be happy about, but the last 2 days ive been going around in a kinda daze, really wanting to cry but not being able to get any tears out. every symptom which pops up, instead of thinking " oh its probably just vit d deficiency related, you gotta give it more time and it’ll go away", im thinking “why are you doing that body???”, and I’m still scared of eating pizza it seems after my episode in london in june!!! (n.b. for those who didnt see the post, i was in piza express with a friend,i was chewing and it wasn’t going down,then i just seemed to swallow it whole all of a sudden,gave me a mega wave of dizziness, i have no idea how i got through the rest of that day!), lunch was pizza today and i found every mouthful sticking in my throat, so i kept drinking water inbetween but it didnt get much better. i know its stupid, but i just was so upset, then it was stifling at work and i just had to leave (thankfully it was just a leaving do, so no-one missed me), and all of a sudden I’m remembering all the really scary times from my first 6 months of nightmare symptoms, then remembering that i can’t hold a takeaway tea anymore without immediate pain and wanting to drop it, i know its nothing much but i just feel so weird and rubbish :frowning:

and i really wish i could just tell mum everything but its all got so messed up i can’t and it’s really hurting :frowning:

Hi Your post title makes me think- why are you sorry. We have been thre, done that and got the t shirt as well as the programme and map. You are among friends here who have also got the t shirt… Etc. we know how hard the dizziness is and the coping or not with the pain. How it affects your daily life and how it all changes for you. The worst thing for you as well as me is telling some one how you feel- with the best intention in the world they will not know how the symptoms affect you, the dizziness, memory loss, balance, continence issues… Etc But if you tell them in a sort of logical manner there will be some understanding if you start with Feelings (cause loss - effect how u feel) Symptoms (cause) Pain (effect) Loss (effect) You may be able to effectively communicate how you feel Do not dispair as there are good friends on this forum that will try to help, but most if all remember you are strong enough to do it Take care :slight_smile: x

Aww Jules

Really sorry you feeling this way… you seemed to be doing so well so it must be really hard for you.

All of us in Limboland feel exactly like that at some time so we are all here for you Jules.


love Pxxx

((hugs Jules))

I agree wholeheartedly with Anon.

Unless they’ve been through something similar themselves, no one can truly understand how all these symptoms, emotions and scary thoughts can make us feel. Plus, a lot of the time they can’t even ‘see’ our symptoms, so it can be an uphill struggle to convey what it’s like…

You don’t need to apologise to anyone for how you feel.

I’m not sure what else to suggest because we all have different ways of coping. Maybe to try and take your mind off ‘what it could be’, do something that you know you love doing. Have a few friends over, watch a film - something you enjoy. Having a bit of ‘time out’ can make a world of difference.

Debbie xx

Hi Jules (((hugs))). I remember the post you mentioned. Ive just read your melty cheese song too. I must be Hank Marvin I’d love a welsh rarebit, I just cant find the impetus to do it. I’m a bit cream crackered today I stayed up all night and now me mince pies are bit mutton jeff still, gotta look on the bright side, things could be worse ! I blame the heat, its nice and cool in the pool, and were all due a weekend of cats an dogs. Eastenders tonight on the good ole beeb. I’m making a ruby murry later I bet the kitchen heat does me in, its been doing that alot lately, thats maybe why your a bit iffy. I hope you start feelin better Jules, we need more lyrics the verse about why the christmas fairy is frowning isnt going to write itself. Take care Jules.(((more hugs))) Frank.

thanks guys, i have the place to myself next wed, so think im gonna try phoning the helpline, i love you all to bits, but it would be great to be able to hear a voice when talking about stuff.


has anyone used the helpline who has any tips, like what to say, or anything? im not really sure where to start!


Just be yourself Jules, I’m sure your going to be fine. Its nice to know someone is only a phone call away. I was thinking of doing it myself, but usually when I think of some help or advice I need it usually gets answered in the posts.

thanks :slight_smile: oh yeah im not saying you guys aren’t amazing for help and advice, i just need to hear a voice and let off some steam i think! or is it just for asking advice and help? im not sure if i have any current questions, other than needing to talk!


Oh Jules so sorry everything is feeling to much at the moment. It is best to try and talk things through sometimes so I hope it goes well. When you feel low try and think of good things that have happened like your holiday…and sounds like you have a song to finish to : ) Huge ((((hugs))))) Mish x

Thanks Mish, im just worried I’ll get all tounge tied and be useless,or they’ll say i can’t phone them cos im not dx’d, is it for limbolanders too? I’m trying to think of good stuff but its hard. and I still can’t get any tears out which doesn’t bode well cos the last time I couldn’t do that I had a day of nearly non-stop crying which i don’t really want again :frowning:


I know what you mean about the tears. I was dx at beginning of June and had taken it all really well until last week when I broke a tooth and dentist said they couldn’t fix it for two weeks. Well everything suddenly hit me and I just sat in the car park blubbing for ten minutes before I could drive off and I wasn’t much better for the rest of the day. Just suddenly felt like I was falling apart and nothing could be fixed (daft I know) especially as my long awaited MS nurse appointment for that day was cancelled as she was poorly and so far no sign of a new one. I am waiting to talk to her about meds and stuff etc. Anyway the MS society obviously knows that waiting for answers is really hard, so be brave (again) and give them a try. Mish x

((((hugs Mish)))) thanks, I’ll try but I’m trying madly to convince myself its all in my head at the moment!


Ive been trying to do the same Mish, but then I go over the symptoms that are still ongoing and nothing changes they still need sorting out even if its different dx than what is suspected. How did you get on Jules with the phone line? I was thinking of doing it ages ago just I’m a chicken. I hope your feeling better too. Frank.

I’m calling them tommorow Frank, will see how it goes. Still don’t know what to say!


That could be your opening line, “I dont know what to say” but I need someone to.talk.to and take.it from there. its something to break the ice with. Help line staff will probably be well used to listening and giving the right answers. Good luck with that one Jules. F.xx

thanks frank, il use that. xx