new member

[runner4860]

Hello, I was diagnosed in 2005 and over the past year I have had to adjust my lifestyle quite a bit and wonder if it is a shared experience.

I used to run or workout 6 or 7 days a week now I am lucky if I can force myself to do so on Saturday and Sunday. I can't run anymore (after 35 years and 12 or 13 marathons) so I still cycle and walk and do a little bit of yoga.

The other night I had a fairly terrifying experience...at three a.m. I woke up to what seemed to be a hypothermic state...lasted about an hour...teeth chattering and body essentially convulsing or excessively shivering...has anyone else experienced that? I read that it is rare for MS patients to have such an episode.

Anyway, it is hard to make the adjustments and to be so thoroughly exhausted day in and day out...just wondered how other people deal w/ it...

I work full-time and commute so I have very long days...like 15 hours from time I leave my house to when I get home at night...but it is the change in being able to find energy to workout and the hypothermic episode which is most difficult to deal w/...any feedback is appreciated!

[hunterd]

HI RUNNER AND WELCOME!!!!!!The other night I had a fairly terrifying experience...at three a.m. I woke up to what seemed to be a hypothermic state...lasted about an hour...teeth chattering and body essentially convulsing or excessively shivering...has anyone else experienced that? I read that it is rare for MS patients to have such an episode? i`ve never had that one but i do get others!!!
i`ve had ms for 10 years(dec 2000).
Anyway, it is hard to make the adjustments and to be so thoroughly exhausted day in and day out...just wondered how other people deal w/ it...
i don`t know if there is any one way to deal with it. i just roll with the punches. deal with it as it happens. i, too was active, and still am(just in a different way). no longer work, i retired on dec 31, 2010. the hours would be difficul;t though. i do take provigil for fatigue, if that is any help,

dave

[JoanFrances]

Welcome4860

My oh my you are a very busy person

Just reading about your day had me worn out.

Napping when needed is the only way I can get through the day. Accepting that there new norms for me fairly often is the only way that I have been able to have any joy at all.

I no longer get stuck on "but I used to be able to do ........(what ever it is I am trying to do)" helps me a lot. That doesn't mean that I don't occasionally have a pity party, but not often anyway.

Don't know if I have ever experienced the incident that you described, bu I have had a fair share of strange happenings for sure.

Hope you are having a better day today.

Be sure to come back and visit often. There probably someone here that can relate to what you have described.

[FutureHope]

Not sure how to answer

Part of what you describe- MS effect on energy I understand. When I was dxed October 2008 I worked full time as a teacher of young children.At the time I needed no mobility device and had some fatigue. As time progressed I went from needing a cane occasionally when away from home to by 12/2009 needing a wheelchair at all times when away from home and being on Medical Disability Retirement.

Your long work days very likely impact your energy and health, and can lead to some of the issues you described. Is it possible to modify your work schedule?

The thing that helps me hold on is my Faith. I know God cares about us as 1 Peter 5:6,7 explains; I know he is not the cause of our health, or any other, problems. He does not try us with evil things
(James 1:13). I also know very soon there will be no more pain or illness, all of which will be healed (Revelation 21:4; Isaiah 33:24).

[runner4860]

thanks

I appreciate the feedback for sure. I think I have been a bit taken by surprise by the fact that MS has changed my lifestyle because for four years I was able to just push myself so hard despite the diagnosis. I don't think I feel sorry for myself, atleast I try to refrain from it...but it is remarkable to look over the last year and see what I have had to change...alot of what I experience people around me cannot notice...balance issues (but not falling), inability to grasp coins out of my change purse, changing form of exercise, exhaustion (that everyone chalks up to my work day which really isn't likely since I now sit at a computer all day)...but no longer running that was a big one for me bc it was part of my identity...in any case, I have much to be grateful for and appreciate the feedback...hopefully I can be of help to others as I read other members posts...thanks again! If you hear of anyone that had the "shivering/hypothermia" experience pass it on that I would really appreciate their thoughts on it...again,many thanks!

[KoKo]

Hello runner

Welcome to the MS World Forums!

I have a feeling that you miss running in the same way that I miss playing tennis

I recently had to move and gave my tennis rackets to a family that could use them. They've been sitting in my closet for a few years now. I told myself if by some chance there is a myelin repair drug in my lifetime - I'll buy some new rackets to celebrate

I can also relate to the little things that others don't really know about us because they don't see. Here are some little things in my day just today: couldn't get a key on the key ring, couldn't tear up a cardboard box, took quite awhile to get the cap off of a new tube of lip balm, had to get rid of my heavy duty self-propelled vacuum sweeper as I can't control it anymore - there's more, but you get the idea!

This is what makes this site so valuable to it's members - the understanding of living life with the challenges of MS. Anyone who doesn't have MS and it's symptoms really can't understand fully.

Glad you came aboard - hope to see more of your posts

Take care,
KoKo

[sprinkles]

Hi Runner,

You didn't mention what, if any medicines you are on? What you described happened to me every Sunday night after I would take my Avonex shot.


I quit the Avonex a few weeks ago, but I had been on it for 5 months. If I took it before bed and tried to go to sleep, I would wake up going through exactly what you described. It got better, if I took my shot earlier during the day and stayed WELL HYDRATED.

Anyway, welcome, to MS World. Like others said, I have long since tried to take out of my vocabulary "I used to be able", instead, I try to focus on what I CAN do.

Tammy

[joyjoyw]

I used to run six miles, six days a week...and when I couldn't run anymore, it was very frustrating. I forgot about it for the most part until recently when lots of people I know "found running" and started training for 5k, 12k, half marathons...I have bilateral foot drop and can't run and I am sooooooooo jealous that it is very depressing right now.