Last reply 2 weeks ago
Running and MS

Hi. I’ve only recently been googling for MS info. Honestly I dont know if i want to be here (bec what that would say about me accepting that I have MS – I’m a mess). But I’m really struggling with pain and mobility and worse is i don’t feel i am getting the support I need from mu neuro.

Anyway. There’s lots online about how people still manage to run with MS. I used to run 3-4 times a week, about 4-6km a go, but now I can barely run two before my arms and legs pain, feel numb and I get terrible aches in the days afterwards. Or sometimes I’m completely fine and post-run I am like I used to be enjoying a recovery. my psychiatrist says I should stop running as I am destroying my body. i know I am in a form of denial (if i can run then it means my MS isnt a thing) which we’re working on but I honestly love the feeling that running gives me (I also have chronic major depression and recently battled suicide ideation, again!). I’m also a terrible swimmer so I don’t get the cardio workout I want from that.

Anyone with similar experiences? Any insights? And how people with MS cope with office work, esp in senior leadership roles. I am a head of department and I’ve been thinking alot about quitting. The emotional, physical and psychological demand, along with the MS fatigue, is too much for me to cope nevermind thrive.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


jen1973g
2 weeks ago

I’m the same but with swimming absolutely love it makes me feel alive but as you it’s counterproductive if I have a decent run of health and go back to swimming I’m left hurrendos .
I have had to admit defeat to a certain point and I’ve stopped working too with defined me I was a very successful self employed hairdresser.
I too feel shit angry and it’s knocking my confidence.
There’s no easy way out I’ve asked for help from ms nurses to help my emotional state I’m all over the place


itsmewithms
2 weeks ago

Good for you to push yourself to stay active. I do the PT that is listed for me but really don’t do much for cardio or get my pulse racing. I had a hip replaced a couple of years ago due to destroying my labrum so that pretty much shut down that type of activity! one thing on the “can’t do” list for a hip replacement is running due to the constant hammering on the joint.

I have switched over to a stationary bike as a road bike would be challenging where I live (rural life with no shoulders) and potentially balance issues. I set up the bike in front of a TV and ride away. I also do the strength and balance exercises from my PT guy and some good yoga and stretching.

This physical activity is also good for us cognitively. I can sometimes feel cog fog creep up on me and want to stay sharp. I work with accounting and systems, data management and ERP system implementations (Oracle and SAP). Hard to get the nurse types to understand the level of concentration and reasoning needed for that type of BA work ;-/

I also keep in mind that the #1 and #2 factors in MS advancement according to some studies are stress and sleep. So – factor that in and your long term health and mobility. What I thought I wanted once I don’t think would be good for me. I am now interviewing for a position in managing “Master Data” which are kind of the gears that are needed for transactions to process but shouldn’t be as stressful as working with the actual transactions or the people entering them.

Maybe there are other ways to get your cardio than running? like biking? and make sure you don’t elevate your core temp to trigger anything (hasn’t been my issue in past but is for others and stuff like cooling vests help?). I think it helps when I bike in cool temperature controlled environment. In our new house I also make sure there was a spot for me to have a little personal tub and I can quickly fill with hot or cold water if I need to immerse myself quickly to adjust my temp.

I’ve switched up my work a bit to remove what I found most stressful (managing conversion of transactions or working with users regarding transactions) to something more in the “back office”…managing the master data, the “gears” to get transactions to process correctly. I still find it very rewarding and can do the type of data grinding that few people can do. See if there is something else you can do by “stepping sideways” that you don’t consider stepping backwards 😉 and take care of yourself first.


stumbler
2 weeks ago

Hi in Capetown, a lovely part of the world (I was there around the turn of the century).

Now, first off, stop Googling. You need to stick with reputable websites. to avoid the out-of-context horror stories.

It’s not easy when you aren’t confident in your relationship with your Neuro. There are better Disease Modifying Therapies (DMTs) available, which might suit you better.

Living with MS is all about acknowledging the MS and then managing yourself accordingly. Exercise is good for the body and soul, but we have to be sensible with ourselves. So, practice moderation in all things, especially the exercise. Raising our core body temperature can lead to problems, check out Uhthoff’s Phenomenon (https://www.mstrust.org.uk/a-z/uhthoffs-phenomenon).

I’m surprised by your psychiatrist’s attitude to your running. It makes you feel good and you enjoy doing it, so why not! And, isn’t that what’s life all about? Just remember moderation and Uhthoff.

Working life is also somewhere that you need to manage yourself. If you can manage financially, then why not quit. But, what else would you do with all that time? See if you can remove some of the responsibility. Delegate. You’re the boss, so what you say goes!

You need to ensure that you get regular breaks, to relax and manage the fatigue. And, really importantly, you need to manage your stress levels. Stress is a major protagonist (or should that be antagonist, I always get confused!) of MS.


stephz
2 weeks ago

Hi @ayesha_fakie Check out #MSRunner or #RunWithMS on Twitter and Instagram – exercise is good for you – you might have to change how you train and maybe your expectations but it’s doable…I’m training for my first ultra and my friend Sarah is going a Good For Age for the London Marathon…I recommend getting a good sports physio to help with recovery and to add strength and stretching to your routine…if running makes you happy adapt so you can keep running – there’s also a great supportive FB group for Parkrunners with MS


ayesha_fakie
2 weeks ago

@jen1973g @stumbler @stephz @itsmewithms
thank you for taking the time to comment on my post. i truly appreciate it and its a welcome change to just be heard. funny, i’ve been thinking of cycling so that’s more food for thought. and i definitely need to recalibrate my relationship with work – many have told me this, even bosses – so i can stand to ease off the gas a bit. its just a challenge bec it means changing the way of me being in the professional world, esp as a woman and WoC.


jen1973g
2 weeks ago

Yeah it must be difficult to get to the top of your game then make the decision yourself to side step.
I’d look it has a brave step acknowledging your limitations and then putting your health first.
We are all lead to believe a achievement at work defines us especially when your on the top of the ladder and you worked your arse of to be there but consider who’s ideaology is it societies your upbringing maybe it’s a false sense of living maybe doing just enough is enough.


jen1973g
2 weeks ago

Yeah it must be difficult to get to the top of your game then make the decision yourself to side step.
I’d look it has a brave step acknowledging your limitations and then putting your health first.
We are all lead to believe a achievement at work defines us especially when your on the top of the ladder and you worked your arse of to be there but consider who’s ideaology is it societies your upbringing maybe it’s a false sense of living maybe doing just enough is enough.


itsmewithms
2 weeks ago

Good for you…do all you can but not beyond what you can 😉 sometimes we need to think about ourselves first and what we need for our longterm health.

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.