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Do you ever feel 'care free'?

I’ve only just been diagnosed but I keep thinking about the future. I’ve woken up after sleeping really well today and for two seconds felt fine, and then the next minute that little nagging anxiety in my stomach appeared and it only took me milliseconds to re-register that, oh, it’s because I have MS. I am wondering whether that little nagging worry or fear will ever not be there now. Will I ever feel that happy care-free feeling again?

It scares me that for the rest of my life, I will always have that feeling in the pit of my stomach…that I can for a moment put the thoughts and worries about my MS out of my mind, but my subconscious will never let me forget. That worry will always be there.

How do you all feel? Is this something you can identify with?

Yes, I can identify with this completely. When I was waiting for diagnosis and newly diagnosed I thought about MS every waking moment of every day. I can’t tell you how long it lasted, and I expect it’s different for everyone, but there then came a tinder when I could forget about it, when concentrating on something else, or watching a film or talking to someone. Then suddenly it would come back to me, the spectre of MS. Now several years on it does still occupy my thoughts some of the time, and its impact now is such that it’s impossible to ignore, but even so it’s not there all the time.

When I was newly diagnosed I got various bits of advice from a number of people, but the best was this -

Try not to worry about what might happen, because it might not.

xx

Hi Space Cowboy!

I hate to say it, but personally (…and I must emphasize that I’m not speaking for anyone else!!) after 17 years with MS - I continue to dream that I can still run, play football, golf etc., but as soon as I wake up - it becomes clear that I have no balance, strength or the same freedom of movement that I used to have.

Sadly, I don’t expect this to ever change.

Not surprisingly, I prefer being asleep as only in that state can I do all the things I used to take for granted

Dom

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We are remarkably resilient and adaptable creatures. It seems to me that, after a shocking reversal of fortune (like finding that one has a chronic progressive neurological condition, for instance), the bad news dominates one’s thinking for a while (maybe quite a long while) and looms very large. But, given time, normal life and normal concerns do tend to reassert themselves.

I well remember being newly dx, and, every morning on waking, doing a quick systems check to see what, if anything, was going on the blink today. I did that for a long time. And, I have to say, with every new relapse, I do it again for a bit. But then the normal-life-reasserting-itself thing happens again and I wake up worrying about Christmas shopping/President Putin’s intentions/the price of fish, just like everyone else.

Please give yourself time. When one is in the mental state of high alert and anxiety that always goes with acute illness, and the sharp and real concerns about the future, it is hard to imagine oneself achieving peace of mind ever again. But most of us manage it, I think. It is not a matter of forgetting about MS: more a matter of MS settling into place in our mental lives, rather than dominating them.

Alison

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Wow Alison, you’re very wise aren’t you?! Thank you. Your reply made me chuckle.

The worries that so often take over and pre-MS worries like Christmas shopping that seemed so huge now pale in comparison. But also those worries that in a weird way I hope over time will again seem HUGE (with the obvious exception of Putin, which will always be an insane unknown – Russia don’t monitor this forum do they?!) as that means I will be allowing MS to somehow embed itself in my life, rather than it controlling my life and thoughts.

This forum is awesome…!

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Hey Dom, I can definitely identify with the sleep thing. Maybe our imagination and subconscious can also be a good thing – we can float off to a world where things are different.

From my ridiculously limited knowledge of all this, the one thing I know is that it’s different for everyone…but also that it can be different for the same person over time. That’s probably totally unhelpful/irrelevant, sorry. I honestly don’t know what I’m talking about!

Thank you for your reply. I know what does help me at the moment is feeling like there are other people who ‘get’ this stuff.

SCx

That’s really really good advice. Thank you. I’ve said similar things to people in the context of other situations, but now I need to apply it to myself. If only that was as easily done as said eh?!

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Hi, well yeah, kind of. My lack of mobility never escapes my waking thoughts. But when I dream, I am NEVER in a wheelchair! Plus I am always slim!

I’ve been disabled (but not by MS) for 17 years, so it is hard to think otherwise, as it is always obvious to myself and others when looking at me in a wheelchair.

As you are ‘new-ish’ to this palaver, your MS is bound to be at the forefront of your thinking. I hope it becomes easier hun.

Love Polly x

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Hey S.C !!! Love the name. Better than Maurice. … ditto to all the above. Unconscious I have played both Wembley for Norwich and headlined Donnington !!! Then I woke up and thought Bugger ! Also won quarter of a million on lotto. Even remembered the numbers… (they’ve still not come up) Thing is dude, I’ve had this gig for 19 years, and I’m still standing. I forgot I had it for a decade. Just keep doing your stuff till you can’t. May be tomorrow, may be in years… I’m off to whistle the littlest hobo theme from my misunderstood youth… Andy.

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Allison the wise !!! You need a cloak and a white beard. I worry about the price of cheese…

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Given you an extra L too…

I do wish that a bit of this alleged ‘wisdom’ (flattering as the allegation is…) would manifest itself in my real life! Not a chance, alas.

A

I cannot remember ever feeling “carefree” when I was well - I’m not naturally that sort of person, and will always find something to worry about, so if it wasn’t MS, it would be something else (big or small!)

For someone naturally given to worry, I’ve taken “big” things - like MS - surprisingly well. Maybe that’s because I accept it’s out of my control, and what will be will be, and I don’t have to fuss about whether I’m doing it right, or meeting expectations, or whatever. There’s no right or wrong way to be ill!

I think I get more stressed about things that - intellectually at least - I recognise as “silly”, but generally speaking, they are things I have control over, so a lot of it is worrying about whether I’ve done stuff, or whether I’ve done it well enough. Now that I’m no longer working, there’s not so much of that, as there are relatively few things anybody expects me to have done - and certainly not many I’ve made a formal commitment to.

But I still get anxious about quite minor things - like today I was anxious about my mum phoning (she has hypochondria, so her calls are always a bit of an ordeal - especially for anyone living with genuine illness), and I am anxious about going to college tomorrow, because last week I had severe transport problems on the way home, and got home in a distressed state.

I suppose the latter one is about MS, but more about the day-to-day challenges of living with it (“What if I get stuck standing up again, on a packed train for an hour, because of a signal failure?”) - not so much about where I’ll be in five years, or ten, or 20.

It did take two or three years (yes, really that long) before I woke up without feeling somehow shocked that I actually had MS. I would forget about it in my sleep, and wake up wondering why I didn’t feel too great - then the explanation would suddenly hit me: “Oh no, I’ve got MS!”

I still wake up with an immediate reminder in the form of pain that I’m not very well, but I’m no longer so shocked and surprised by it. It’s become part of life - albeit an unpleasant one. I no longer think: “OMG, what the heck happened to me?”

Tina

x

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In a word “yes”. I do understand how you’re feeling just now. It took me probably the first year to stop fretting that every little ache and pain, or dizzy spell, was going to manifest as another relapse but I did get there in the end.

I still work, still drive, still have lots of fun, still take holidays. Sure, some of those things take a little more planning and I have to have contingency plans sometimes but I don’t let MS rule my life any more.

If I go to our local free music festival, I will take my chair now and I stand for the songs I can’t sit still for and sit down for the ones I’m not so bothered about. If I know I have a major event coming up, I will make sure I rest up for a few days beforehand. I try to do as much as possible to limit the after effects of having a good time but I still have good times.

Give it time and be patient. It will take you a while to adjust to it but I am sure you will learn to live with MS. It’s easier to work round it than to fight it all the time.

I wish I could have put it as eloquently as Alison did

Best wishes

Tracey x

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The original post reminds me of when growing up, the day after breaking up with a girlfriend. You wake up to another glorious days in the 1980s… what ripped jeans adventure awaits today…? and then you think “hang on… something isn’t quite right… oh yeah… bugger.”

Fact is, if you are care free in life, then you lack ambition and that in itself is something to be anxious about! Consequently this isn’t something limited to those with MS, but MS is most certainly an addition to this little aspect of humanoid neuroses.

For me personally, i wake up with a sense of relief instead of foreboding. The relapse which provoked my diagnosis saw a new symptom, or an increase in severity every morning for the better part of six weeks. However, subsequent to that, every morning was met with symptoms improving or melting away entirely. Nowadays when i awaken with no suggestion of a relapse, i am profoundly grateful.

Those who worry about the future fail to appreciate the joys of the present. I may be in my forties and diagnosed as having MS. But in the news last week, someone in their 20s was hit and killed by a jeep as they waited for a bus. Do you see my point?

We all need balance in life and i am not saying we shouldn’t bitch and moan about what ails us, but we MUST make an equal amount of effort to revel and celebrate all that is good.

My jeans are still ripped Paolo !! It is 1989 though. And I have crossed to the dark side and got a puppy.

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Yes. Every waking moment was taken up with fear based thoughts when I was first diagnosed. At the time I could not imagine ever feeling different. The fear consumed me.

These days its still there, but no longer does it dominate my thoughts. Its took a long time and I still have the occasional emotional “relapse” but its nowhere near as strong. In someways I do feel carefree. Having to face my fears but coming out the other side has made me pretty fearless. Its hard to explain, what I can say is the diagnosis brought me to my knees, it broke me, but two years on I’m more grounded and content than I was before the diagnosis.

Don’t allow it to take more away from you than it needs.

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