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Dealing with uncertainty - thoughts, please?

Dear Friends, when responding to a post on the Limboland forum, I was reminded of something I heard Sharon Salzburg, the US meditation guru, say on a podcast yesterday, and I thought I would air it on here and ask for your thoughts.  It concerned our attitudes to uncertainty, something that we are all very accustomed to dealing with, in MS as in life. 

Salzburg said that we think we're afraid of uncertainty, but actually we're wrong about that: uncertainty isn't so bad.  What we're really afraid of, and rightly so, is the terrifying, apocalyptic narratives we weave for ourselves in the absence of certainty.   If we could find a way of reminding ourselves that these stories we weave are just make-believe, and settle into a comfy relationship with good old, plain uncertainty, we would all be happier!  Happier, and also more prepared to deal skilfully with the real trouble that actually does come along. 

Does that sound like sappy nonsense?  Or might there be something in it, do you think?

Alison   

I have MS

Hi Alison

If we knew for definite that when diagnosed with MS, we'd inevitably become severely disabled. If we knew, absolutely without doubt, that within a couple of years we'd be incapable of work. If we knew for certain that we'd be wheelchair users. Then we'd be right to be scared stupid of the diagnosis.

And some are, because they aren't aware that it's really only a relative few of us who are 100% wheelchair users. That actually some of us soldier on (with decent employers) in work. And that severe disability doesn't affect everyone. Disease Modifying Drugs ward off the relapses that cause increasing disability (for many of us). It is likely to take years, if ever, to become disabled. Yes, there are people who are diagnosed and disabled very quickly (there is one person in particular who has become seriously disabled within 5 years of diagnosis), but that's unlikely for most.

So, yes, I agreed living with uncertainty is dreadful, but it's actually better than living with certain severe disability, carers, wheelchairs, loss of driving license and independence.

Those of us who've had MS for years have learned to live with uncertainty. I must say, from a personal perspective I'm relatively comfortable with that. I've been unable to take DMDs and am now progressive (although still relapsing). I am one of those unfortunate people who have ended up seriously disabled, a wheelchair user and in need of a certain amount of personal care.

If I'd known this 20 years ago, I'd have been shlt scared. But I didn't, I assumed none of these things would happen to me. I learned to live with the terrible uncertainty of this bl00dy disease. I made accommodations in my life for uncertainty. I'm certain this has made my life happier than if I'd guessed that the worst case scenario would apply to me. (By no means do I believe I'm  in that 'worst case' scenario group. I'm still OK in many respects. I take my hat off to the people who've had to live their lives very much more disabled than me.)

When you say you came across this thought when replying to a Limboland post, I suspect you've found yourself saying (typing) much the same as many of us have written in the past: 'it may not be MS, but if it is then it may not be too bad - there are DMDs, don't panic, try not to worry ...' Again it's the uncertainty that so many people are frightened of. Teaching the newbies where to look for answers that will help them to live with the uncertainty is the most valuable thing we can do. I think.

Sue

Yep - I can relate to all that, for sure.  And yes, having MS for 20+ years is a  kind of compulsory advanced course in dealing with uncertainty, isn't it?  I don't remember signing up for that course either, but there you go, and here we are, Sue. :-) 

I think there is something in it.

What a fantastic reply Ssssue. If only every newbie could read this post. It captures so much. 

Uncertainty is fine. Living in the moment takes a lot of pressure off. If I was certain of my life tapestry at birth, I'd have been tempted to press fast forward to get to the fantastic bits, then pushed pause. The bumps and uncertainty along life's journey help to make the great bits sparkle even more. Uncertainty isn't a bad thing. 

Living in the moment does indeed take the pressure off, when one can manage it.  And yes, without the bumps and uncertainty, we wouldn't have the same capacity to recognise and appreciate the good bits.  I love the idea of making the good bits sparkle - that's a lovely image and I'll hold on to that one.

I have MS

Thank you t2bs (if you don't object to abbreviations).

I just logged in again because I thought there was something to add to my post. It's that many people, when diagnosed with MS, are relieved. In some ways, their fear of the uncertainty is over. Instead of mysterious, odd, frightening, symptoms, they have a diagnosis to hang their weird ill health on. No longer will they feel like 'frauds' or think that they aren't believed.

It's an end to the uncertainty of limbo. Later of course, the uncertainty of the diagnosis may rear up together with the accompanying fear!!

Meanwhile, the idea of fast forwarding to the fantastic bits and pressing pause!!! Oh I so wish that were possible. Meanwhile it's a case of living in the moment. Sucking every bit of joy out of life we can. Just in case...

Sue

I agree with everything above, and Ssssue certainly put it well.  My diagnosis was a relief, but it made Mum and the kids cry, because their thoughts immediately went to the worst-case scenarios.  I'm still having trouble explaining to all the relatives that I'm okay with the way things are.  Yes, bad things may happen in the future, but those bad things might also NOT happen. I have enough to deal with on a daily basis that I just can't worry about the maybes down the road.  Life is for living, and while I might be living rather slowly and methodically these days, I'm not giving up and not letting the possibilities drag me down.

That's the attitude I aspire to as well - sometimes with more success than other times!  But remembering, as you say, that life is for living is really the only show in town, isn't it? 

I have MS

There is a lot of wisdom in the posts above, derived from many years of experience. As with so may things related to chronic illness the boundaries and goalposts keep shifting. One day the uncertainties (in any life) worry the hell out of me and then on other days, I see nothing but good stuff. I reckon that provided we are aware when we are constructing our visions of what MIGHT be, we have to option to add NOT as well.

Have a great day. Best wishes to one and all.

Mick

Yes, such thought-provoking replies.  I think you've hit the nail on the head about agency: if we see clearly that the grisly stories about the future are self-constructed, that gives us a chink of light, and reminds us that maybe we could choose to construct some nicer ones.  And that's hard, when worn down by worry and illness and low mood and when our circumstance, objectively viewed, are very difficult.  But even that glimpse of the chink of light can brighten a dark moment, I think.

 

An interesting post indeed!

In my own case, the uncertainties kept changing. 23 years ago, I went from being a very busy woman, running a home, working full time, bringing kids and grandkids up, the usual stuff of a regular life.

I had been a yo-yo dieter and thought weight gain was causing my fatigue and falls...but no..this sneaky uninvited guest was gate crashing my life.

PPMS was suspected but not detected on a myriad of tests.....I learned all about the condition and joined this group. I accepted life with a disability as the new me. I needed a wheelchair part time for a while then moved on to full time.

Suddenly, after about 7 years, a new neuro told me I had HSP...hereditary spastic paraplegia....a condition similar to MS in it`s symptoms, but devastatingly carried a 50% chance of being passed to my daughters and grandchildren.

Only 1 in 100k people get it.......what terrifying news to be given and yet somehow, I was in such a rare group. I felt dirty, disgusting and hated myself.

I apologised to everyone in the family and keenly watched them walk...looking for tell tale signs. Uncertainty for sure!

A year or so later, I took genetic testing and yeh, you guessed it..negative. I didnt have it all! That basxxxx neuro was my all time enemy! More uncertainity!

For some following years I had no clue what was wrong with me. My regular neuro discharged me saying `What`s happened has happened and there`s nothing we can do for you`. Cheers!!!

So life was then a definite uncertainty. I spent 2 years wearing a big fat ? on my forehead. Where would this take me? I already needed so much help with all personal care, needed my meals cooked for me, needed a driver to take me out, etc.

Last year, my daughter changed jobs and became PA to a neuro in a Centre of Excellence Neurology hospital. She told her boss about me and he wanted to see me. I got referred and hey presto! Spinal PPMS was definitely diagnosed!

Uncertainties about what was doing all the bad things to me was known! And boy! did it make a massive difference to my thinking! I wasnt going to get any cure or treatment..but that didnt matter....I didnt expect it.

So what uncertaincies haunt me now? The very worst one is who will pop their clogs first..me or hubby? I truly hope it is me first...cos things would certainly go pear shaped if it`s not me!

My hubby is my rock, my main carer, my sanity, 50 years together means such a lot.

The general population say things like`You never know what`s round the corner`, but for folk like us, it is different....we are already round that corner, arent we?

Have the best day you can folks!

Boudsx

 

My goodness, what a time you have had.  Yours is a very vivid illustration of how a bit of certainty for a change can be a life-changing relief, at least in terms of how you feel about your life, even if it doesn't shift the day-to-day much.  And, of course, because a secure PPMS dx lifts the heavy burden of the HSP dx from your shoulders - that must have been a tough time indeed.   

I agree that in one sense we do, to some degree, know already what is round the corner, or at least we are more aware that there are corners around which bad stuff lurks, so we're not so surprised when we round the bend and there it is.  Trouble is, life never runs out of corners, does it?  But I do think that the difficulties we all face - and you face and have faced more than most - makes us more resilient and more prepared to deal with stuff as it comes along.  It's a hard school to learn in, alas!

Just to add to the above, i have read a similar post before (maybe on this forum) and there was a recommendation to read 'embracing uncertainty' by Susan Jeffers. I've not read it myself so cant vouch but thought i would share the tip

I have MS

I’ve been asked to contribute to this thread on behalf of chocorange, aka Ellie.

 

Ellie/chocorange has plenty of experience in the uncertain world of MS. She had RRMS and following a horrible relapse in 2012 became much more disabled than previously. Since then her MS became secondary progressive, and her disability has increased. In particular, her eyesight is badly affected as well as one side of her body. As a result, she finds it difficult to write so sends texts and these often have spelling mistakes.

 

It’s a great shame that Ellie has been prevented from writing. I know that she is bright, eloquent and a terrific communicator. She makes friends wherever she goes and has always been very popular on the Forum. This is what she sent to me, I’ve corrected some spelling and made it read a bit better. The thoughts are Ellie’s; any mistakes are mine. Sue

 

Alison

 

I agree 100 % for me.  Physically I am very poor but mentally I am currently strong. I would have tried to answer to this post myself but it wouldn’t make sense to most and would unsettle newbies, hence I have asked Sue for help.

 

A reply mentions Susan Jeffers. I have read her books in the past, her writing makes total sense to me. Thoughts words action. Everything starts with a thought so it’s essential to start there.

 

Hi to all who remember me. I read the forum sometimes but can’t post. I had to share my reply to this! 

Thanks Sue for typing and thanks Alison for posting this thread.

 

Ellie x

Ellie, what a pleasure to hear from you.  I think you were a Forum old-timer even when I joined, and that was a little while ago! It was always good to read that your inspirational, matter-of-fact ability to get on with it and make the most of things, and it still is.  I am sorry that MS continues to make life so difficult, but your appearance on here shows that you haven't lost your ability to navigate the difficulties and find a way through.   Mind you, I find myself falling into the trap of wanting to congratulate you on how well you are coping.  As if you had other options!  When people tell me how well I'm coping, I always reply that I'm only coping until I have a better idea.  And that's the thing, isn't it?  None of us asked for any of this.  Making as good a life as we can is really the only show in town.

Great to hear from you, Ellie, and thanks too to your Gorgeous Assistant, Ssssue.  :-)  

Val

And from me too, how lovely to hear from you Ellie. You always had my admiration, if I remember rightly, four children helped you to deal with what life was throwing at you?  And I remember that awful relapse that changed things so much....

Thank you Sue for being message board PA.

I remember Ellie!  So sorry to hear of your progression but so happy to hear you are strong mentally.  Sometimes I think this is more important. Xx

This post is such an interesting read. Very thought provoking. I often think how important it is to re-frame things in life, so our existence isn't dominated by fear and negativity. Easier said than done at times.
 

Ssssue, I don't mind the abbreviation at all. S4ue doesn't seem very respectful so I'll stick with the former!

Norasmum - I get the bit about explaining things are ok. I remember telling my kids that my diagnosis was exciting, as we wouldn't know what would crop up from one day to the next. I wanted them to see that uncertainty can be a positive thing if we re-frame how we look at it. It's really helped them.
 

Mogace - Such a good way to approach life. 

I'm pretty new to this game, but am learning so much from the more experienced members. Thank you for sharing. I'm definitely living in the moment and those of you that contribute so constructively to this site have helped me get to that point. Uncertainty can be our friend if we let it. 
 

 

What a wonderful way to share the news with your children.  That must be such a tough, tough conversation to have, and to have set the emotional scene in that way is amazing.  I don't have children, and I'm not sure I have your sense of perspective and flexibility of mind either, but it is lucky for your children that you do!  I wonder whether that re-framing exercise has had some spin-off benefits for you as the person with MS as well?  It is so easy to slip into despond after dx - I was a teary mess for months, I remember - and I could have jolly well done with a bit of perspective-shifting myself then.  Now too, sometimes.  That's a refreshing perspective you have - thank you.

 

Thank you. You are right, the approach with my kids had certainly helped me too. Personally, I try not to feel angry or self absorbed about my diagnosis as it doesn't get me anywhere. I fully appreciate we are all different and I am only early on in the journey. Perspective helps me to move forward through each day. There's always a positive. They are sometimes hard to find, but focusing purely on the negative would just drag me and everyone around me down. I don't want that life. Thanks for the original post. It's drawn lots of interesting comments.

I have MS

Really sorry to hear that Ellie/chocorange is having such a naff time, I loved your writing and admire the way you are still communicating via Sssue. Nice one Sssue. I hope things can be less crap for everybody soon.

Mick

I remember Ellie/chocorange/cinderellie on here when i first joined  many years ago.I remember she used to arrange a lot of meet ups.

I also remember Ellie.

Ellie sorry that you're in poor shape physically.

When i first arrived at this forum I used to read lots of posts.

Some sad, some happy.

However your sheer positivity had a huge impact and ever since I have tried very hard to keep my positivity.

Thank you Ellie

Carole (formerly Pigpen) xxheart

why is everyone so * polite about this * awful condition we have.  It * people's lives up - our work/our social lives.

The ever present uncertainty is a * curse - I have never 'accepted' it - I remain * angry about it.

I rail against being sort of compliant with the medics - I long to tell the neuro to sort things out and find a * cure - to tell the m.s. nurse to stop * patronising me.

I'll bet there isn't a day when not one of us doesn't have to think about our * m.s. and what * vagaries it may decide to visit upon us that day. 

We're an amazing lot - but lets not treat our m.s. with 'respect' - it's basically a crock of * and we've to get on with things as best we can.

 

 

 

 

Yes, I think that getting on with things as best we can, as you put it, is a real achievement for all of us.  Particularly those most severely affected, and whose families are most severely affected, directly or indirectly, certainly, but even those of us who get off relatively lightly have their work cut out.  So yes, I agree, we're all pretty amazing.  And I personally find it really helpful to come on here and share experiences  because, varied as our individual experiences are and various are our ways of coping with it, there's somethig shared that we all just 'get' because we've got MS. 

I was buddies with Ellie too!

So sorry you cant write here now Ellie. But I`m glad you can read the post sometimes.

I love the camaraderie we build up here.

Love you guys...my 2nd family.

Keep safe all.

Boudsxx

Lab

Being a CBT therapist and having a diagnosis of MS. I am often quite good at telling myself and patients to sit with uncertainty and that life is very uncertain so why are we worrying about something that does not yet exist or may never happen. It's human nature to worry about things e.g. what life will be like in the future with MS. But what we should be doing is living in the present moment rather than in the future with our worries. People generally tend to worry as they are trying to make sense of things and also trying to seek certainty, however by worrying it onto fuels anxiety. I tend to always try to be present focused. Mindfulness can really help. 

Yep.  And worry turns into one of those unhelpful habit loops that become self-reinforcing, doesn't it?  Goodness knows, I've spent enough time in the darkness of the wee, small hours demonstrating this effect!

 

I'm in the limbo zone as well at the moment.  I do agree that thinking the worst, certainly doesn't help my symptoms. 

As William Shakespear wrote "There is nothing either good or bad but thinking makes it so".  I think mostly that is true.  Not always easy to follow that frame of mind though!

 

He did have a way with words, that bloke.  :-)   And yes, I think it comes back to trying2beserene's (and others') point about how we frame things in our minds, doesn't it?  We cannot change our circs, but we can maybe shift the angle from which we choose to view them, and that little perspective shift can make a real difference to how we feel.   

I am sorry that you are languishing in limboland and living all this stuff in real time.  I wish you well.