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struggling alot

Hello all I study music at college, I havn’t been going in for the last 2 weeks, my confidence has surely lacked since I was dignosed, Iv been in 3 times since half term,

I suffer with fatigue badly and incontinence - because I study music we rehearse in a tiny recording studio and can get very hot in there, I suffer with bad fattigue as it is without being in a hot room, but the heat makes it worse, and I get shouted at for not doing anything and for being half asleep, when im ment to be rehearsing. As for the incontinence, well I accidentally had an accident in class, and some guys could smell it, and said “what is that smell”, I got very nervous about it quickly got up and lent over to pick my bag up, And knocked over one of my class mates guitar over, and quickly left the room, to get myself cleaned up, there was no damage to the guitar, but everyone keeps tellin me I should of appoligise to him, and that he is angry with me, at the of the end the lesson, I saw my tutor and he never had any time to talk to me, I told him what went on, and he shouted and said go to your docters then i’m not a docter.

I felt so upset, and very anxious about all of this, and it made my symptoms worse and more appear.

My class is now sending me horrible messages saying they are pissed of with me because I havn’t been in for 2 weeks.

What do you think I should do? It feels like know one is listening to anything I tell them.

Sounds like you need somebody or some organisation who advises employers etc about MS to advocate for you with the college. What about the college union, may be they could look into that.

Im apart of the union hun, Im the equality and diversity officer.

Kylie,

What an awful experience you’ve had. I suggest you pay a visit to the college head and explain your situation. There is no way you should be treated in this way. I am shocked that people can treat you in such an uncaring way. Maybe it would help if you carried an MS card explaining the things that may happen.

Go back to the college, take no notice of what the ignorant people say, see the head and carry on. Don’t let them spoil your music career and as for your tutor, tell the head how unprofessional he has been.

Your as good as the next person, just have a nasty problem to conquer, and you can.

Love Janet x x

Thank you janet! I think this has all got on top of me just recent, Just as I was thinking to myself I’m ready to go back to college Monday and that was when this girl said to me “Kylie all our band is annoyed with you” now I think this has kind of lacked my confidence again. x

Kylie,

I know perhaps you feel it’s private, and you shouldn’t have to, but have you considered telling your classmates you have a serious health problem?

Because judging by their stupid and bitchy comments, it hasn’t even crossed their minds.

If they know you have MS, but are still behaving like this, I’m afraid they’re just not very nice or very grown-up people, and you have to try to rise above it, and not listen to what idiots say or think.

But if, as seems more likely, they have no idea, you might be able to clear the air by explaining that you’re sorry you haven’t been your normal self, and telling them something about why.

It’s up to you how much detail you want to go into. You don’t necessarily have to tell them it’s MS, but you could tell them you have a health issue which, whilst not life threatening, and not catching, IS pretty serious.

Unfortunately, a lot of the symptoms of MS can be mistaken for laziness or stupidity - which other people find annoying - particularly as it often doesn’t show on the outside (unlike, say, a broken leg).

So if you think that might be what’s happening, one way forward is to tell them.

Tina

Hi Kylie I am appalled by your classmates immature and selfish behaviour. They need to do some speedy growing up. I hope you feel that you can fill someone in, in authority. This sort of incident should not be happening and making you feel so bad. I agree with Tina that it might be time to tell everyone about your situation. If they already know then I am speechless regarding their behaviour. Your teacher should be shot in light of the way he/she shouted at you even after your explanation. Try not to let this get you down - this is their problem. Keep smiling sweetheart, Teresa xx

Hey ladies, nearly the whole of the college knows I have MS, the day I went back to college after my dignossis which was after christmas holidays, my tutor told the whole of my group, but none of them are taking into the concideration that I aint well enough to do what thoses can do, Like go into college everyday…

This same girl said to me, if she was dignossd with this illness, that she would act normal and still do everything and not exspect attension, I then told her you wouldn’t be saying any of this if you had been dignossed with MS.

I think they are being like this, because they dont really know what MS really is or how badly the illness can get to you, mentally and physically.

Hi Is it worth getting some of the free publications from the website to get them to read so they understand better? If they are not prepared to try to empathise with you though perhaps it is just worth ignoring them completely. Selfish people like this are just not worth it, especially that one girl who thinks she would act normally if she had MS. Huh! We wish! I know you are having a really tough time at the mo’, but it will improve, I promise. Teresa xx

Kylie they sound like a bunch of the most horrrible, total arseholes from the tutor downwards and if that comes out as a filtered word, then I’m sure you can guess it. I am very sorry that you have such a rotten shower to deal with.

It is terrible that you have experienced one of the nastier MS things in such unsympathetic company. It is very tempting to say tell the whole boiling to go and fuck themselves sideways, and I expect that will come out as a filtered word too, but you can guess that one as well. But I know you have to be realistic and not do anything hasty or stupid. What you need quickly is somone on your side who can be an advocate for you at college. Is there anyone who could fulfil that role?

One thing I will say - you are getting a real baptism of fire as far as MS goes. Stay strong - if you can cope with this, you can cope with most things. I am so furious on your behalf.

Good luck with it all.

Alison

x

Hi Kylie, really can’t help you much beyond what others have said, but I tend to think that colleges are keen to help their students so could you explain to the part of the college that deals with this and get them to step in and help, a college really should be trying to help their students, it is in their interest too that students pass. I may be wrong but I get the impression (not just from this post) that you are quite young and yes just diagnosed, things will get easier for you, I think you need to go back, rise above what te others say, you have done nothing wrong. Btw, workplaces should put arrangements in place to help their workers, so should your college. Thinking of you Kylie. Cheryl:)

I’m really shocked, Kylie.

I honestly thought it could only be that they didn’t know, and didn’t even suspect.

If they do know, but are still carrying on like this, I’m not sure if they’re stupid, or nasty, or both.

Believe it or not, in some sick way, it is possible for some people to be jealous of MS, if they see it as diverting attention they think should rightfully be theirs. MS can make someone news story of the day, albeit for all the wrong reasons, and this can unnerve the kind of person who doesn’t like sharing the spotlight.

I don’t know if that’s what’s going on here, but it could be. Otherwise, some people just act odd, when confronted by something they’re scared of, and don’t understand. Maybe the idea of someone their own age being seriously ill is something that takes them outside their comfort zone, so they find it easier to pretend it isn’t really happening, and that in some way you’re “making a fuss”.

I know it’s hard, but you’re going to have to try and grow a second skin, and not pay any attention to ignorant or downright nasty people. You don’t owe them anything - too bad if they’re “annoyed”. They need to get a life!

On a more practical note, have you asked your doc for referral to a continence nurse? There are things that can be done about “that” problem. With the right help and advice, you might be less anxious about it happening again.

Tina

You poor poor girl! What a truly horrible experience for you. I think sometimes people around the sufferer go into denial too, as if pretending that it’s not there will make it not a problem!! Interesting that arseholes doesn’t get filtered so let’s use that - bloomin arseholes!! You need to be strong love and tell them how ms affects you. Give them a web address to read - obviously this one or the literature and also this one http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/6 seems very good.

I really feel for you as do all the other people on here. Big hugs and lots of strength as you go and face them.

xx

Oh bloody hell, as if coping with this stupid f***ing disease wasn’t bad enough! I think you’ve got some good advice here - just wanted to add my support and suggest maybe one of those little portable fans in your recording studio when you go back, it might help to cool you down a little? In my “previous life” I was going to be a music teacher - it turned out that I’m not particularly good at the teaching bit, but I still enjoy playing the various instruments when my hands are behaving (mostly piano) - I think that, once you start, music is one of those things that you will do in some form for your whole life, and I think that it’s a good escape if you can use it that way.

I really do hope that there can be some sort of solution to your problems at college and that you can finish your course.

Luisa xx

Hi Kylie

How awful for you and what a bunch of T*ssers they sound. With friends like that who needs enemies. Does the college have a disability dept. Most nornally do to assist students with mobility problems/dyslexia etc… I think you should contact them for support and possible adjustments you might need whilst studying at college. Hopefully with them on your side yiu should feel more confident about things.
I am so sorry that this haa been your experience of peoples attitudes towards MS. I can only feel sorry for them that they have such hatred to treat someone like that and as for your college tutor telling everyone is totally inappropriate and unprofessional. I would consider what others have suggested and would put in a formal complaint. Someone who behaves like that shouldnt be given the priveledge to call themself a professional or teacher - HOW DARE HE!!!

Good luck. Remember its not you with the problem its obviously them, hugzxx

F

Thank you all, I am 22 years of age and as for telling the dissability dept, lol well I am the equality and diversity officer at my college, I cant really go and tell myself things that I already know lol, but I am very thankfull for all the comments and I do apprieciate that everyone has told me. x

Well I think you’re amazing! I sent your story to my daughter who is at uni and suffering at the moment. I’m very worried about her. You are an inspiration for the young and will go far in whatever you do. Have faith and hold your head high xx

Hi, Kylie. Sorry and annoyed to hear about your experiences. I have had MS for over 12 years and I am 55. My thoughts are that you should see an MS nurse (and you ‘could’ get in touch with my cousin) - (he is Company Secretary to the Practical Law Company in London.) I suffered the same incontinance and I was ‘fitted’ with a catheter - it takes a bit of getting used to but An MS nurse should be able to tell you if it would be any help to you. Try not to let ‘people’ who do not understand MS to make any ‘mistaken judgements’. Remember that we are told that there are over 100,000 people with MS in the UK. My wife is an Optometrist and could give you any advice (if needed) for your eyesight. Hope this helps. x.

Marcus.

Hi

The first thing that struck me, apart from the deplorable behaviour of the tutor is you are in a small recording room that is extremly hot.

Heat affects and can exacerbate MS symptoms.

The test for MS before MRIs and Evoked Potentials was to place the patient in a bath of hot water and see the effect.

The heat will not be helping you and the college need to know this.

For the tutor to reveil any illness to anybody without your permission is wrong.

For your tutor to shout at you and tell you to see a doctor is wrong.

He needs taking to task, do you have a welfare officer and also a complaints system to report him to.

You are once DX with MS classed as disabled and therefore protected by Disability laws.

You need to see a solicitor who specialises in disabillity law, Yellow pages or the local news paper will list some.

As for your colleges shame on them but I feel sure that the majority are being lead by a few undisirable people so seek out and cultivate friendships with the friendlier people.

Ronin

Thank u all, this help is really helping me alot :smiley: xx