Hoping for some MS/CIS solidarity here. After some time of coasting with this CIS diagnosis…Getting my head down, working hard, trying to stay healthy…I feel like I’ve hit a rough patch. I wake up utterly exhausted after plenty of sleep, my legs feel heavy and weak (but I can still walk and cycle ‘normally’) and I keep feeling a weird cold patch that comes and goes on my left foot. None of this feels like it warrants a call to the MS nurse. My left foot/leg has been weird for the past year with buzzing sensations coming and going. The definition of a relapse I’ve been given seems to be a lot more intense than any of this. I think every new sensation and the exhaustion just makes me feel scared, and that makes me panic and cry and then quickly ‘pull myself together’, stick my head in the sand, run faster, work harder and pretend everything is all just normal…until I get exhausted all over again.
I’ve only had the one relapse and it’s not left me with any visible, hugely recognisable issues, and it means I got the CIS diagnosis 1.5 years ago, with a high chance of MS conversion. But sometimes I feel like I’m falling to bits, like just doing the ‘normal’ everyday things is too much. I feel like stopping and screaming…or better still, dropping to the ground, toddler style, and having a meltdown and just saying ‘no! no! no!’ like toddlers do when they first learn the word. I try so hard to do everything and pretend to be ‘normal’, because to all extents and purposes I’m healthy and fine. I’m holding down a demanding job, I exercise regularly, I volunteer. Writing this is making me realise I’m probably deep down in denial…I thought I’d sunk into this new reality and was coasting into a ready acceptance. Clearly not…
So how do/did you deal with denial after first being diagnosed? How do you manage wanting to ‘do everything’ while you can, with the need to actually rest and stop sometimes?
Hi Achrida I find studying philosophy has helped - luckily I have always been a lover of books and ideas so I take refuge in them. There is a modern day Philosopher called Alain de Botton and he runs something called the School of Life which aims to help us with our emotional intelligence. I have recently bought a book by the school called Great Thinkers and in there he has assembled and made accessible the teachings and thoughts of the worlds greatest Philosophers, Psychologists, artists and writers. If you don’t like the sound of that then even a good novel will take you to wherever you want to go. In truth the universe really does only exist in each of our heads and therefore we can travel that universe whenever we want to.
It sounds like you are doing your best to maintain the life you have carved out for yourself so far which is great but as you are discovering eventually your body rules your head and makes you sit down. I think denial kind of goes in circles, like you have days where you’re feeling OK with it all and optimistic and then other days not so much, I think the circle is in fact a coil which eventually leads to some kind of acceptance without you noticing.
There are lots of things in the world we can’t change but there is one major thing that we can and that is how we react to and deal with issues, really focussing on that fact will help. I think sometimes a lot of the frustration/sadness/hopelessness from time to time comes from us believing that somehow we can change what has happened. We can’t, but we can choose how we deal with it.
Good luck on your journey.
Hi JuniperL,
Thank you so much for your reply. I’ve read some School of Life things, but haven’t yet come across the Great Thinkers. I’ll have a look at that. I spend a lot of time reading and thinking for my job, but for some reason it’s a lot harder to apply this kind of thinking to my own life! Your image of the coil of denial is really helpful, thank you, as is focusing on what can be changed/controlled and trying to let go that which can’t.
All the best
https://overcomingms.org/resources/overcoming-multiple-sclerosis-book I’ve just received this free book I ordered. I am cis also and currently feeling very much like you. Hoping this book brings some positivity. I’ve posted link if you scroll down and fill in form
Hi, thank you! I ordered the book too in the first months after holey-brain MRI and the CIS diagnosis. Been following dietary recommendations and exercise etc, and it’s definitely helpful to feel like I’m doing something. I’m possibly the fittest I’ve ever been, but fatigue and weak-feeling limbs hits me extra hard after exercise…but then doing none makes me feel a different kind of sleepy sluggish. Balance, balance, trying to find it! How have you coped with the limbo state?
@achrida I go between just getting on with life to being very frustrated with life. I have currently got reduced vision in left eye and dizziness so been referred back to ophthalmologist. My next appointment is August with neurologist but wether a definitive diagnosis is given who knows. I’m not holding my breath! Hope you are well x
I do think that denial is under-rated as a coping mechanism. It is still one of my best friends, and we have been chums for quite a while. But I have other coping strategy ‘friends’ too, and so will you.
You will grow your own coping style, sculpted by your temperament and your circumstances, but it will likely to an ever-evolving work-in-progress, as it is for most of us. And a healthy dose of denial might continue to be your friend too, when life makes a nonsense of your carefully-laid coping strategies - and it will, from time to time.
In the meantime, denial - particularly in the early days, as you digest one life-changing dx and face the likely prospect of another - can keep a person functioning rather than running screaming for the hills, and that is a good thing, not a bad one.
Finally, you will find, I promise, that you are more resilient than you think. I can say that with confidence.because people just are.
Good luck with it all.
Alison
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Hello Achrida
It sounds like in addition to all the other useful information you’ve been given (I agree that denial can be a positive reaction), you could do with some help managing your fatigue.
Fatigue is a strange symptom. It’s invisible, and is difficult to explain, but from your initial post, it screamed out FATIGUE to me.
You cant just keep pushing through fatigue, it just doesn’t work. Eventually you collapse and like that toddler shouting ‘no, no, no’, you actually have to take some time out to recoup.
This is quite a good booklet on fatigue and it’s management: https://support.mstrust.org.uk/file/living-with-fatigue.pdf
It’s really all about doing things bit by bit. Making sure you rest. Eating and sleeping right. Not pretending you’re ‘fine’, when actually you’re not.
Hopefully you’ll get to a point where you and MS/CIS can co-exist, acknowledging it, pretending it’s not there when necessary and giving it some houseroom when you have to as well.
Sue
I really understand the flipping between just getting on with stuff and feeling very frustrated. Dizziness and visual disturbance seems really hard, have you been able to call an MS nurse to update them on symptoms before your neurology appointment? I called the MS nurse for the first time the other week and found them incredibly helpful - just even to indicate what next steps are, and to give a sense that symptoms were noted so neurologist will get the update in next appointment.
Thank you. Can’t tell you how helpful it is to just hear your honest view and experience of all this. A part of me needs to hear that, because a huge part of me wants to embrace my denial and run with it and say “f it” to fears of the future, f it to restricting my life before it’s necessary. I want to start a family, make the most of my career and not let this stop me in my tracks. I guess the denial just sometimes needs to gently be taken to one side and told - hey it’s time for a rest - before it crashes me into the wall of fatigue!
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Hi Sue, I think you’re right, fatigue is the main symptom for me, and it’s the thing I’m most in denial about. the weird physical sensations are harder to dispute, but fatigue is one I don’t really admit until it’s too late. Especially cause it feels like there are different kinds…there’s one that feels like total mental/emotional overload. Like my brain just says - can’t compute, and I feel like any one little extra thing and I will burst into tears. Thanks for pointing it out and directing me to the booklet. Am incredibly grateful for this forum and the thoughts and advice given. Thanks.
Yea I’ve contacted ms nurse. Had bloods done to rule out infection as advised