Don't let MS steal who we are.

I know I will get shot down in flames when I post this and i apologise to those I have upset, I certainly don’t mean to.

But - has anyone positive comments. Positivity lifts us and helps enormously but all I read is negativity, don’t get me wrong, I KNOW full well what MS can do, I was told in 2008 that I had MS and my mobility is affected as are many other things, i have had to give a job up which I loved, but I refuse point blank to let it steal ME, its stolen so much from me but it isn’t stealing my state of mind which is a lovely outlook on life, happiness in the smallest of things, joy at what I can do opposed to unhappiness at what I can’t do.

It would be lovely to read positivity.

Don’t let it destroy who we are.

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Negative thoughts are good at times - nobody, even you, can be positive all the time! It’s a pressure valve, the verbal vomit on switch that allows us to stop, review, plan and carry on. So you see, this is a site that permits without judgement negative thoughts as part of the MS process. As a Nurse it was a surprise to me to hear how little respect we get but I can understand it’s the ‘front line’ of a bastard condition. You’re right to think, believe we shouldn’t let it ‘steal us away’

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Ohhhhh i agree with you, its having those negative thoughts that make us determined that it will NOT win.

I am sorry to hear that you cone under fire when you are there to help.

Hi,

I know its hard to be positive the crap that MS throws at us makes life a bit hard.
But it is always good to look on the bright side of life what ever that might be things you’ve done in the past that make you feel good. We can all be optimistic that some kind of cure is around the corner.

I know what I’ve lost can never heal but there are good memory’s no one can steal. When you see what’s going on around the world it makes me think I`m pretty lucky.
Stay safe everyone…

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Hmmm.

While I kind of agree that MS shouldn’t rob us of personality, individuality, creativity, relationships, careers, etc, etc, the truth is that it does. Or does it?

Being diagnosed with MS does not per se rob us of any of the above. I was at my most productive, creative and earned the most money post diagnosis. But as disability moved in, I couldn’t work anymore. But it wasn’t MS that took from me, it was disability.

Partly, I’m seriously disabled because I couldn’t take disease modifying drugs, even when they became available. So I suffered relapses that might not have happened with effective DMDs. Some people newly diagnosed will never have severe relapses, will never have to live with disability and will not have changes to their lives such as I’ve experienced. The therapies now available are, for many people, wonderful.

Then again, some people would say I’ve gained in some ways through having MS. I’m perhaps more understanding, more empathetic, more generous with my time and thoughts.

And perhaps I haven’t had any real change to my identity. Maybe neither MS nor disability have stolen anything from me. My friends who knew me pre and post MS would probably say I’m still the same person. Sometimes moany, sometimes filled with happiness (or maybe that’s just gin?), sometimes funny, sometimes serious and worried for the world. Sometimes I’m self pitying, but I don’t often let that show. Maybe I should?

But saying there’s too much negativity on this forum isn’t totally correct. People having terrible experiences need an outlet. People whose lives have changed immeasurably need somewhere they can express their grief and sorrow at what they’ve lost. So expressing negative thoughts is partly what this forum is about.

Maybe there’s actually less negativity than you might see at first glance anyway. Even posts that begin with negative thoughts often alter as people join in the conversation. I’m reminded of the recent Negativity winning thread. It began with sadness and sorrow. Gradually it changed to beautiful images, humour, music suggestions and ultimately cake and chocolate.

By no means am I shooting you down in flames Tally. But maybe I have a longer experience of this forum. It’s a wonderful place really. As someone who spent hours and hours writing on the Brain Fog thread, which had nothing whatsoever to do with negativity, and an awful lot to do with fun, I don’t see negativity on here. Sometimes I see people who are hurt, or feeling desperate, or depressed. And often I see the greatness of people, in all our weird and lovely different ways.

Sue

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Hear, hear. There are some heartbreaking situations in the world, yes we must look on the bright side, ok,ok we all get down, im not exempt from having ‘down’ days but whoaaaa, i take a look around me and think HOW LUCKY AM I compared to some.

We are united in the fact MS WON’T steal our self worth, it won’t steal who we are.

Thank you Ssssue, yes, you are perfectly right in what you say, absolutely. I wasn’t solely hitting on this particular site but of course how is anyone meant to know that unless i inform them, I’m sorry if i come across as hitting on this particular site.

Each of us are individuals with our own views on A,B & C and despite not reading everything that has been posted, i had cast my eyes over a post that was on the negative lines and i coupled that with other posts i had read on various other sites and hey presto, here we are now…

I apologise to anyone who i have upset by my words…

Hi Tally,

I can not imagine anyone being upset by your words. We all have varied experiences and styles. I have positive times and crappy times. It is how we react ,adapt to and learn from the circumstances dealt to us that differentiates us.
Wishing you all the best.
Mick

Don’t even try, Tally. I’m not sure how long you’ve been posting here, but it used to be a really fun site, which is what drew me to it. Unfortunately, when they changed it we lost a lot of people. I tried a couple months ago to post something along the lines of “let’s talk about happy things”, and I was shot down immediately by someone who was vehemently angry over the thought that anyone with MS could ever be happy.

I agree with you. Yes, we all have bad days. We need someplace to vent and ask questions. But we also need to be able to express joy and show the newly-diagnosed that MS isn’t the end of the world.

I couldn’t run and play with my kids when they were little, but I was great at reading stories to them and cuddling while we watched movies together. By the time they were in their teens, I was too tired after work to cook supper, so the kids pitched in. We had some odd meals for a while until they developed new skills, but we had a lot of fun with their experiments.

I’ve lost a job with great benefits and had to quit one that I loved and paid more money than I’d ever made. But now that I’m on full-time Disability, I’m having the time of my life! Yes, there are days when I’m weak and achy, but it doesn’t matter because I don’t have to go anywhere! I don’t have to do anything I don’t want to do!

My times is my own now, and I finally have the chance to dabble in various interests. I can’t hike any more, but I can sit quite comfortably on my back porch with a pair of binoculars and watch nature. If my hands don’t work well enough to play with stamps or crochet hooks, then I read or watch TV. If my vision’s poor, I listen to music or use that time for a nap.

I pretty much grew up with MS, so I’ve had no choice but to adapt as life goes along, and I’ll be d*mned if I’m going to crawl in a corner and just be miserable all the time. That’s not a life.

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One of the finest things about this forum is that we are able to express our opinions safely and honestly. So long as we have respect for one another, we can agree, disagree, argue, dispute, in general just communicate and share ideas and thoughts.

I don’t think anything you’ve said is contentious or liable to cause upset.

So don’t worry, we’re all grownups and we can take different views from one another.

Sue

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Funny as the 20th anniversary of 9/11 approaches, it a kinda ties in with my MS diagnosis and I am ever mindful and grateful of all the things I have been able to do, even with MS in them 20 years and more to come, God willing, while them poor folk never got a chance in the Twin towers - might seem a strange outlook but it helps me

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Hi just wanted to say thanks again for the positives and support.
I have been negative yet throughout the real understanding and empathy gotten plus a happy pill :pill::joy: I have a more positive attitude thanks to being able to say on the forum I’m not OK… Finding like minded individuals with humour compassion and gin & cake music and nature… :smiling_face_with_three_hearts:

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Aw Cruella you fit right in here. Unafraid to show your low moods, allowing yourself a period of doom and gloom :dash::tornado::cloud_with_rain:, but allowing humour and virtual cake to lift you back up.

It’s (in my not very humble opinion) perfectly fine, even necessary, to feel miserable and negative on occasion. Having serious disability (which you and I share), I believe it’s a healthy reaction to our woes. Being able to enjoy the camaraderie and silliness which we sometimes excel at is testament to your good nature and ultimate positivity.

Thank you for your kind words. Let there be more big happy pills :pill:, cake, music, pretty pictures, animals and gin.

Sue x

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I can contribute applesauce-raisin cake and a bottle of whiskey. Do we have any musicians or singers on here? Anyone to provide a tray of non-American cheese?

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Happy to share real (if virtual) cheese with Forum members / party animals.
Mick

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Whoaaaaa fabulous replies AND CHEESE AND WHISKEY… hey FANTASTIC…

As for music, i went to see Hermens Hermits last Saturday at Southport… FANTASTIC (( take into account i had never heard of em before))

Can i ask anyone if they suffer from anxiety? SAYS SHE WHO IS MISS POSITIVE haaaaa… it seemed to suddenly occur 4 years ago , 9 years after being diagnosed.

Tally :slight_smile:

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Gorgonzola :cheese: Wine :wine_glass:!!

As for anxiety, isn’t that part of the human condition?

Sue

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Yes it is. When mine started 4 years ago i thought it was all linked to my mum passing away, because my MS really reared its ugly head with the shock, stress, upset.

But then i read that anxiety is a common symptom with MS. I had never heard of this before.

Tally

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I always chalked mine up to being called “high strung” as a child and then told over and over again that there was nothing wrong with me during the years I waited for a diagnosis. It’s interesting that they’re now linking it to MS. I only dealt with depression during my teenaged years.

Now, please pass some of that good cheese this way, Mick.

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