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.
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.
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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
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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.
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.
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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.
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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!
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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.
Morning Cracowian, we all deal with our own stuff our own way.
I haven’t got time to be angry what is the point, wasted energy isn’t it. What I cant change I don’t worry about, but what I can do is learn to live with the poop i have been given and find a way to make it easier for me.
Oh boy don’t worry when I talk to my neuro or MS nurse I tell them straight I am not stupid actually very informed and over the years I have learnt to live with my MS my way.
So to make it easier for me i have changed my diet I eat super healthy, I take 1400iu OF VITAMIN D a day as my bloods showed i was a bit low, now my levels are good, i have good levels of B12, and every other nutrient to support me, also liver, heart and kidney good and GP said i can tell you drink enough water just looking at your sample lol.
I even bought myself URINARY urinalysis sticks. If i feel i am coming down with a UTI i use one if its ok, i chalk it down to overactive bladder, if it is showing leucocytes and nitrates i ring my surgery and its agreed to send a sample down its always positive. By doing this i am protecting myself from devastating affects of a hidden urinary tract infection. I always find an infection stirs up my MS anyway.
I try to keep cool in bed, i only wear cotton as heat exacerbates my symptoms. I try to walk everyday to keep a bit active, and i rest when i am tired.
I treat myself with RESPECT and therefore as MS is part of me, it is given respect too. I neither asked for it, or welcomed it, but over the years for my own sanity and well being I have accepted it.
STAY SAFE. HANDS. FACE. SPACE and VENTILATION.
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Thanks for sharing the quote greengiant. I’ll say it again alison100, thank you for posting something that’s really provoked wide ranging comments.
Uncertainty, perspective, living in the moment… one of my children said to me today that living through Covid was difficult, but she’d rather live through this than the 2nd world war. She likened soldiers to like being on the frontline in healthcare, but that soldiers didn’t often get to sleep in their own bed at night like doctors and nurses do. She said online shopping was a pain and you couldn’t always get a slot, but at least people could buy a wide range of things rather than have to make rations last for days and days and do without. She said she was worried about family and friends getting Covid, but at least their homes wouldn’t be bombed in the night. She is happy she can still do home learning with her school rather than be sent to live with a strange family in the country. She’s 7. That’s perspective and managing uncertainty. If she can do it, so can we xx
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