Last reply 4 years ago
Wrongly complacent?

I’m diagnosed just over a year and so far the demon has stayed quite-ish thanks to DMT’s and an unwaivering spirit of defiance against attacks!
I wonder sometimes if I’m a) being dramatic in my head when I fear what my happen b) am one of the lucky ones who’ll get away with it?
I’m fearful of being too optimistic and complacent and think should I brace myself for a whole loada MS fun in future years. It doesn’t take up too much of my daily life but I prefer to be prepared.
Would appreciate some incite for those who have lived with it longer.
Dels x

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4 years ago

OK, I’ll put my hand up and acknowledge that next year sees the 30th anniversary of my first MS symptom.

So, how am I? Well, I have to admit that my lady-chasing days are over. It’s my mobility that has always been a problem. So, what do I use to get around the house and up the stairs to bed? Nothing. OK, sometimes, the stairs are a struggle, but I get up them.

I have a pair of walking sticks for very short distances, like to the car and from the car to the swimming pool. I have a wheelchair for longer distances and functions.

I had no treatment, no DMD until the 20th anniversary of that first episode. Talk about shutting the stable door after the horse had bolted!

I’m also considered to be Secondary Progressive now, so no treatment since 2010.

But, I’m sure that my outcome would have been different if I’d been told to avoid stress all those years ago. I can look at a couple of very stressful situations which lead to severe relapses.

So, @cailindeas, how can you view the future? I’d like to think that you could look forward with some optimism. Both the experience and advances of the medical profession are available to you, as are the experiences of other MSers through the wonders of the interweb.

But, who can look forward with total optimism? No-one knows what’s round the corner. Us MSers know a bit more about living a balanced life and monitoring ourselves.

So, all-in-all, live for the day (in a balanced sort of way), keeping plans for the future……. 😉

4 years ago

Fear is your worst enemy. If you feel good, then enjoy it, listen to your body and do all the things you planned, this is your life and have fun with every minute of it !!

4 years ago

I don’t think it is ever wrong to live your life the way you want for as long as you can :-). But make sure the odds are in your favour ( medicines, life/work balance etc)

@stumbler Any wise thoughts on how to reduce/avoid stress? anything you regret doing/not doing?

4 years ago

@caterpillar , now that is a good question.

The answer is to have a true set of values in life. Understand the things that are really important to you. Then apply the following rule:-

“God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference” (Reinhold Niebuhr).

And, what do I regret? Well, I regret busting my butt at work. Was it really appreciated, or are you just another bit of office equipment that gets thrown out when it’s knackered?

So, always consider yourself first and foremost, and what you mean to your family. Work is just a passing phase, family are there forever.

4 years ago

@stumbler 🙂 That was powerful.

I feel like framing your mail and hanging it on the wall in front of me.

It kind of helps to make THAT important decision, if you know what I mean…

4 years ago

I’m 11 years in. I was diagnosed at 19 so it didn’t so much change the life that I had but altered the path of the life that I was going to have. Because of this, I never really had stuff that I can regret as a lot of what happened after just wasn’t within my control. I think that all we can do is live and enjoy things in the moment – even if that means just putting your feet up or having a pint. This thing is unpredictable, so of course blind optimism can be a set up for heartbreak, but being miserable and scared about it doesn’t help, either. Though we can’t take it for granted that we are always going to be as good as we are on our best days, it would be a waste to let them pass because we’re worrying about our worst.

4 years ago

I have literally wondered and worried so much about what life will bring so I’m glad uv asked the question @cailindeas, I can imagine were not the only ones thinking everyday about this. I like urself kinda think well I’m fine and am I being to optimistic and on the other hand I scare my self witless thinking the worst. My worst is when I see someone who has ms at my work place who have it bad and I then find myself fighting my anxiety (again never had this until diagnosed).

I shut myself away from it, I tell no one and do not discuss it. I dread seeing people who know i have ms as they then ask about it, I keep myself sane by coming on here. I’m glad you’ve asked this thank you, and happy others are willing to discuss x

4 years ago

Hi cailindeas that’s great news that your demon has kept quiet-ish. I have only recently been diagnosed (April 2014) with RRMS but had my first episode in Australia 20 years ago and as I had no medical insurance I returned home to the UK and waited to see a neurologist. That relapse (as I now know it’s called) lasted over a year all in all but although investigations were happening I was never told I had MS. Recovered from the first relapse and then went on blissfully with my travels over several more years before falling pregnant with my son. I have gone on to have another child and brought them both up as a single parent (lots of stressful situations but ay hoe) again blissfully unaware I have MS. I have had very little support in my life and I am a very independent woman, so everything that life tried to throw at me I just tackled it. Sometimes crumbled under a blanket, sobbing about my shitty life but then dusted myself off and carried on with being a strong independent single parent with a child with special needs to boot. I am sort of glad that I didn’t know about my MS back 20 years ago as it may have made me not follow the path I was due to follow and maybe I wouldn’t be where I am now (with 2 fantastic kids). So now I know I have MS (possibly SPMS as thought by the boss neurologist a month after my diagnosis which possibly explains a few things..!!) I can inform myself about many aspects of MS and yes the future is a massive worry because of my situation but I will try my best not to stress about what may or may not happen tomorrow (even though I am still under my blanket blubbing like a scared child at times.. I’m only human..). So all the best to you and long may your “demon” keep quiet or better still when they can find a cure he could bugger off completely 🙂

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