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I'm going to burst with rage tonight !!

I am so angry today I just Realy feel like I need to put this down someway- verbalise it one way or another or I might burst ! 18 months of smiling and telling myself to make the most of what I have got, to be grateful rather then focus on the negative.

Well tonight iv had enough, I shouldn’t have t be grateful I shouldn’t have to consider myself lucky for what I do have, I worked bloody hard to be where I am: it may not be much but after 4 years of working nightshifts, heading home taking my kids to school then heading to uni and learning to drive all at the same time burying my parents and grandparents and “staying strong” standing alone.

And then I get this stupid disease- and of course I’m grateful that it’s unlikely to kill me and il still be around for my kids but hell man it’s the most pathetic disease ever! What’s the symptoms: Ahh pretty much anything and everything you can think of ! Will it progress fast or leave you in a poor state: no idea.

And I can’t even complain because I hide it from every one threw embarrassment and shame I mean how daft I must sound when my biggest complaint of the day is that the nerves in my bum keep vibrating or that my calfs literally won’t bend then Im ashamed the next day if I’m fine because now I look like a liar, how can you be soo Ill one day and then perfectly fine the next ???

I know people will thank that, I WOULD HAVE THOUGHT THAT once upon time. And for the two people that do know, they often tell me don’t waste today worrying about the future youl be fine. Six months iv never uttered the word Ms or any of its symptoms, what the point ! Tonight I’m feeling so angry and I know all the right things to say, I tell my patients it myself and I even normaly believe it myself but tonight its all gone to scrap, I’m not considering myself lucky I refuse to think positive and I’m certainly not going to "make the best of a bad situation.

Tonight I will accept it for what it is - it’s crap it’s unfair and it’s damn rite doing my head in. I’m not even 30 iv struggled and worked so hard for years il be damned if I’m going to let MS walk in and make me look like a victim making the best of life. It’s going to have to become secondary because I just don’t have time to hide it or include it either way !

This is a s***y disease and we all know that first hand, so just here to offer a hug, a really big one

Just when I think I’m doing ok, something unexpected will catch me out That is the nature of the MonSter

But you’ll have better days and that’s all I can confirm, and in the meantime, this is the place to come when you need to offload/scream etc.

Sonia x

Im trying to think of advice to give you but ive nothing except look after yourself and grab whatever help is available

Hi Toni,

I hope you are feeling better today and that off loading helped. Keeping it to yourself must be hard, before I was officially diagnosed I kept it to myself and the energy required to do that was wiping me out. When I was diagnosed I told my colleagues, close friends and family. I carried on and tried to be positive but keeping a stiff upper lip in company completely drained me so I had to take some time off.

It doesn’t matter how minor you feel your symptoms are you have an unpredictable incurable disease, you are allowed to be angry about it.

Why are you ashamed and embarrassed about it? You didn’t do anything to cause it, there was no way you could avoid it.

You mention patients so I presume you are a healthcare professional, I am a nurse. Don’t be too hard on yourself, with this condition you are the patient, having MS doesn’t have to make you a victim.

Sending a hug.

Snowqueen x

hi toni

you rant away, this is the place to do it.

seven years after my dx i still feel like a rant but tend to swear at my ms when i’m alone in the house.

(the cat disapproves!)

you are a very strong person.

you survived night shifts, uni, driving lessons, having children and burying your parents and grandparents before you turn thirty.

in my opinion you are superwoman.

ms will not beat you!

however you are worried that other people will think you are a liar. that is their problem, not yours!

why should you have to hide your illness?

why should you feel embarrassed and ashamed?

take care of yourself

carole x

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Yes, sometimes the only thing to do is to look the beast MS straight in the eye and call it what it is. And yes, it is all sodding, SODDING unfair.

Alison

Hi Toni, yes call it what it is, don’t pretend it’s too exhausting. Acknowledge it and share with whoever you want, then get on with your life and grumble when you need to, ask for help when you need to and hate it when you need to.

Xx

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Toni

Have your rant , because guess what we know how you feel. Regarding the fact you have been hit with not an easy life may stand you in good stead because reading your mail is very similar to my life, and i also think if i had been cosseted i could not have coped with this, and belive you i have seen a lot of folk that cant. Rather than be grateful give yourself a pat on the back and be kind to yourself

trish

we feel your pain,we really do,this time will pass,there will be good days and bad.theres nothing wrong with having a rant it helps.

(((((((((((((hugs))))))))))))

J x

It seems the strain of permanently hiding it is contributing to your rage.

I realise that your patients (you don’t say what nature of patients) are almost certainly NOT appropriate people to let off steam to, and that would be unprofessional, and probably unethical. So I appreciate there will be an element of brave-facing it at work - the patients’ problems have to come first.

But they are not the only people in your life.

Like others, I wonder why you are ashamed or embarrassed about a situation that is REAL, and you did nothing to cause.

Would you be ashamed or embarrassed if it was something glaringly obvious, but also not your fault - such as a broken leg - or would that be OK?

As someone commented in a different thread recently, if we - those of us with it - lie and hide it, how will the general public ever have a better understanding of what it’s like to live with MS? They will carry on thinking the same you would have thought, before you learnt the hard way, because nobody has put them straight about the reality. We have the chance to educate people that yes, it really does sound mad that you can’t do something today that was fine yesterday, or that you have invisible symptoms that are really hard to describe - but that IS the way MS is. If this became common knowledge, nobody would have to worry about being thought a liar.

If a diabetic says: “Get me a Mars bar, quick - I can feel an episode coming on!”, nobody answers: “Oh don’t be so silly, you’re just making it up to wangle a Mars bar out of me. And besides, you were fine just a minute ago!” Why? Because it’s relatively well-known it can happen, and nobody’s going to think they’re lying or kidding.

When (IF) it becomes relatively well-known what can happen with MS, nobody will be suspected of lying or kidding either.

Tina

x

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Hi Toni

Just wondering, how old are your children and do they know you have MS?

Hope you’re feeling a little better xx

((hugs)) Sorry your feeling crap I cant say anything other than SCREAM if it makes you feel better I have endured it for over twenty years and fought it at every stage and my smile has at times slipped but I try and laugh at it but sometimes its through gritted teeth.

Don

An expression which i value, and is applicable to all people in all situations:

You tolerate only that which you are HAPPY to tolerate.

It doesn’t sound like you are too happy right now and so perhaps something needs to be amended?

You seem to have maintained some form of ‘bulldog spirit’ for these last 18 months and i think that is a good thing. However, it is entirely possible that this spirit has been maintained for wrong reasons?

There is a single truth also applicable to all people, all of the time:

Humans are inherently selfish.

ie. it is intrinsic to our nature, for even the kindest most benevolent and seemingly altruistic, to be secretly hoping to reap some personal reward for the their words and deeds.

The ‘nice’ thing about MS is that you are offered a blank cheque to be selfish. If you want to appear chipper, then do so. If you want to be thoroughly vile and pissed off, then please proceed. You have been offered a turd of an incurable condition. Manage it in a means that works for you.

Even fellow MS’ers, whilst offering sympathy and compassion cannot truly understand what it is to be you and suffer your symptoms and fluctuations.You need to do it all yourself, in a manner that suits yourself; be it happy / mad / denying / self-pitying.

good luck and strike upon your own balance. ups and downs. peaks and troughs. the bad days are what give the good days their value.