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Hopefully someone will relate

Hey all, How does anyone else deal with , when you get asked to go out with friends and you politely tell them you are not up for it. But you can’t help but feel like they think your lying … I’m still suffering from the trigeminal neuralgia, which is exhausting. Last night the pain attack was for a straight hour… Everything is now hurting today . I want to just sit and cry . My work are now giving me grief because of time off, I have letters from my nurse, my neuro, I’ve been to the company doctor , now my company want a doctors notes for every time I have off. My doctor signed me off this week as she said I wasn’t resting. I can’t rest as I am constantly thinking I am going to loose my job . My friends are all at a party tonight and were texting me to go, ( you can leave early, don’t drink etc etc ) but when I said I really couldn’t , it was like they turned. I really just want to disappear at the moment . I’m fed up of everything. And the pain is really getting to me . I can’t take much more medication as I’m already a zombie as it is, I nearly poured a kettle over my hand today as my mind fogged over… Just had enough … xAx

I’m having the same issue with a family member. It’s frustrating when symptoms are invisible to others. Don’t worry about being polite with those that aren’t polite to you xx

Yes that’s exactly it, I actually think it would be better if I had purple spots across my face … I think what’s made it worse is I am feeling totally depressed and isolated and would dearly love to be out with my friends but can’t, even a trip to the doctors last week wiped me out . I don’t think they get how lonely I am. xAnnax

I’m there with ya. I let it all hang out today, no politeness to arsey people, launched a bowl and threw my laptop. Sometimes you need to let go. Are your family supportive?x

Hi,

Trigeminal Neuralgia is very isolating. Mine is under control now but I can remember feeling very lonely because nobody can really understand how truly dreadful it is.

I think when it comes to dealing with friends you have to develop a rhino hide and just insist on what you need. Some people will take umbrage when you don’t accept that going out is going to make you feel better! At the end of the day it is YOU who has to deal with MS but they can’t understand what that means unless you tell them. Be assertive, don’t make excuses, lay it down in no uncertain terms that you have a chronic condition and now have to live a different life. Some people won’t like it – but tough! Nobody wants to come across as whiney but it’s no good pretending that everything will be OK in a day or two. This is MS not the flu.

On the TN front – if medication is not working perhaps you need to investigate surgical solutions. Your neuro should be able to help with this if the GP is clueless. Geography plays a part in what procedures are offered but I think it always comes from neuro surgery.

Jane

used to say my deafness was a “no white stick” situlation, i think maybe this is worse :frowning:

What you could say is ,“I’ll ring you at 03 oh no 'o’clock tomorrow to see if you want to go out in 20 minutes”, 'cos that is how I feel all the time. Just a thought from a knackered neuron.

As for work, make copies of everything they send you,ask for minutes of any meetings,ask for info about company employment policy and generally let them know that you are aware of your rights and you have medical support,

Enjoy not having a hangover,

Wb x

Hello Anna,

There will be very few of us who use this forum who have not been in similar circumstances to yours.

When we are unwell or just completely overwhelmed by fatigue it is just too much at times to even consider socialising dispite a part of us desperate to do just that.

Personally at these times I feel at my most vulnerable and lonely and have found in the past that these times are when my friends leave me alone if I give them any indication that my MS is acting up, it’s a catch 22, I dont have the energy to go out or even entertain and yet I crave for a short visit , a text or a phone call I didn’t instigate.

But over the years I learned that with my family and true friends honesty is the best policy and now I just tell them the reason why I cannot do some things sometimes and leave the thought with them.

For myself I dont need sympathy I need empathy and am fortunate to have achieved that from the few friends I now have left ( quite a few have fallen by the way side over the years) and my family, but I did have to remind some of them many times and on odd occasions even now.

The great thing for you about joining this forum is that you never have to feel alone and whilst we cannot be there in person with you we are just a click away.

Take care

joy x

Thank you all , I think I am just having a down day. Not being helped by a text asking how my tooth was . Even though I have explained and sent links as to what a TN is. My dr and nurse agreed that they didn’t want me to go on other meds yet as I’m on amitriptyline as it is and double the dose does seem to work but with side affects which counteracts the amantadine… And after a while there’s only so many tablets you can take with out feeling like a walking pill box. I am lucky that my family are supportive, well dad doesn’t talk about it and mum does get it, but she can be quite old school in regards to " come on , you need to get up and go out" sometimes it isn’t that easy. Think the pain and the tablets and the stress are all just building up and at this point there is not a lot I can do. Tomorrow is another day . xAnnax

I think you have absolutely hit the nail on the head here, Jane, and set down very clearly something that is very hard to express. I was nodding vigorously all the way!

Alison

Anna, I definitely agree that purple spots would make life easier, in some ways at least!

With the friend understanding/not understanding thing you are dealing with one of the very difficult things that MS faces a person with. It is tough stuff, and there are no easy answers. I hope that some of the good advice you have had from others is helpful to you. At least you know you are not alone with this - it is something we all face and it is not nice.

I hope that they get the TN under control - I’ve never had it, but know from others that it is just foul.

Good luck with it all.

Alison

Hardly anyone ever really ‘gets it’.

My family have to a degree although I think my mum, 86, still thinks that if I pulled my socks up I could manage more.

Many friends have dropped me since MS… they just can’t handle it and don’t know what to say… and they want ‘the old me’ back (huh! Me too!). Also I think many people really do think that ‘strength of mind’ could overcome these things… the old ‘It will never happen to me’ thing.

It’s why this forum is so important. At least we all know what it’s like and understand that we were all once energetic, sociable, busy, fully-able people but this thing came along to change all that. It did ‘happen to us’.

Getting used to that is part of the huge learning curve that’s created by MS or any chronic condition.

Yes Anna tomorrow is another day & you will get up & face it… and as usual we will all be here to help each other get through it.

Pat x

This forum has been Life line at times, Especially in the beginning when things were up in the air and awaiting neurologists etc etc … It’s funny really my 4 year old godchildren understand that I get tired and some times my hands and legs don’t want to work properly , yet grown adults stare at you like you should burst in to an Irish jig… Although to be fare , my godchildren spend a lot time looking at my ankles, I had 2 x wings tattooed on them last year " when my legs don’t want to work , I shall just fly like Hermes the messenger" There still awaiting me to take off … Lol lol lol lol

I was under pressure to attend a team gathering in a west end pub in 2011. Several pints of guiness mixed badly with the baclofen tablets I was taking at the time, and suddenly I couldn’t stand up!. I had to get a taxi home and never went back. I was lucky my employer retired me on health grounds 6 months later.I would not recommend this as a course of action, but it worked for me.

Peter

I did fall over at my company awards last year, Thankfully manage to get on and off the stage to collect my award. It was when I was standing holding my award talking to someone . Foot went dead , land on floor… I wish I had been hammered when it happened , I then got hammered out of embarrassment … Not my finest hours, but alas in the end there were people at lot worse than me at the end of the night… Lol

Can i just point one thing out to you? As you are having a lot of time due to MS,make sure that the GP wties down MS on your fit notes as this means that LEGALLY they cannot couint any time off that you have due to the MS (Disability) can be counted towards as time off due to sickness.

If they do try to use this against I would point them in the direction of the Equality Act 2010 and get them to look it upo or just hand them a photocopy of the relevant section of the act and watch up 'em back pedal very quickly!!

Andy

That’s a great point Andy. I’ve just got my employer to do this. I have very little sick leave that’s not ms related and was frequently triggering our ‘come in for a chat about your sick leave’ meetings! It’s made me feel a lot happier now.

Good luck finding and photocopying that section, because it’s my belief there’s no such thing! (And I’ve combed The Act several times, when this has been claimed before).

Sickness is sickness. Sorry to disappoint those who think otherwise, but MS does not mean your salary is guaranteed for life, regardless how long or how frequently you are off, because none of it can lawfully be counted as “sick”.

The law does not require that someone who’s been off for a year is to be treated as never having been absent at all, just because they happen to have MS.

Yes, the law does expressly recognize MS as one of very few conditions that are automatically deemed a disability. However, nowhere does it say sickness must not be counted for these conditions.

Tina

Have to say that I agree with Tina on the above statement. I work for an excellent company with an HR manager who is an absolute stickler for doing everything by the book and exactly according to the letter of the law and even he has never said to me that any time I have off due to ms is not counted. I have never been given any different information regarding sickness absence to what anyone else in the company has received. Like Tina I have also looked and never found anything about this in the act. However, I can not confirm how it works in practice because i have never been off due to my ms. I would also be reluctant to “hand them a copy of the act and watch them back pedal quickly”, that sounds like a sure fire way to me to start getting on the wrong side of the very people you need to keep on the right side of! Cheryl:-)

I can definitely relate Iolanda. I went out on Saturday. I went to the Tate Modern with a group of friends and then went to the pub and then went for a meal. I don’t drink but my friends afre very funny drunks so that is fine. After the meal we went to another pub by then it was 1 o’clock in the morning and my friend’s wanted to drag me off to a club. I was really finding it difficult by then. I’m in relapse at the moment and i had been drinking soda and lime which has a lot of sugar in it which made things a lot worse.

I was a real party animal when I was younger and I think I still would be if it wasn’t for MS, so I decided to go on to a club with my very drunken friends, I had really quite bad jelly legs by then but I persisted and we danced Salsa for another hour before being turfed out. I really enjoyed it but I really just wanted to go back home to my bed. It was definitely calling my name. My friends wanted me to go back home with them. Fortunately, the taxi wouldn’t take five and I told them that I just wanted to go home. They were really lovely about it and quite concerned. I then started walking back to London Bridge to get a bus. My legs were really bad by then. I got incredibly scared on the walk to the bus stop. I thought that I was going to just fall down in a crumpled heap on the pavement at any moment. At that moment I felt so vulnerable and realised just how incidious this disease really is. I can no longer take walking a mile to a bus stop for granted. It is so vile.

The thing is my friends are great. They do expect too much from me but when I tell them they do understand. I don’t go out much these days but I am not going to let this disease take the few pleasures that I do have and I am going to laugh in it’s face when I do go out, even though it may have the last laugh, I will laugh louder.

Anyway, I just wanted to chip in my pennys worth. Good health to everyone.

Adrian x