Last reply 2 weeks ago
Lost

I’m gonna give this a try..I was diagnosed with MS 13 years ago, and I almost never talk about it to anyone. I rarely talk to my husband about symptoms, relapses…except to say, ” when this gets bad enough just throw me a party, bop me over the head, and throw me over the side of the boat”…(we live on a sailboat) I have always been an active person,..sailing, snowmobiling, back of the motorcycle..yadayada…you get it…Well. I’m slowing down..more and more….My husband and I have plans in a couple of years to go back out cruising on our sailboat. I’m not sure whether I’m going to make it. That most likely will be the end…How do you reinvent yourself when your whole life involves activity? Today was a really awful morning, and I thought to myself, if I feel like this all the time..forget it…How do you deal? Sorry for the vent.

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mavisdavies
2 weeks ago

Hi @oopsie, I’m undiagnosed and very new to here but wanted to say hi and that I’m so sorry to hear you are feeling this way especially as it sounds like you have an amazing hubby and share a great life together. I’m sorry I can’t offer any advice on on your MS but I can on feeling lost for whatever reason and that is reaching out to people for support (family and friends but especially here) I’ve only been here a short while and it took me while to pluck up the courage and I’m so glad I did as I feel so much better being supported by others who know where I’m coming from. Sorry if I couldn’t have been more help but I know there will be plenty of people here who can help. Good luck and take care.


edmontonalberta
2 weeks ago

“How do you reinvent yourself when your whole life involves activity?”

It is difficult; seriously… My life revolved around sports – the good news is that I am in my 60’s. I played baseball & wallyball my whole life; climbed volcano’s & been in a few jungles. That part of my life is over; non-negotiable. So Plan B it is…

Combing through my past, I realize there are sedentary things I enjoy. Card games, fishing from shore, coaching teams, helping children. This will be my new life since I have no choice.

You just need to figure your “Plan B”. And ensure you treat your partner well; so they stick with you on your journey through life…


stumbler
2 weeks ago

@oopsie , living with MS is wildly different from waking up disable after an accident. With MS, it’s a (hopefully!) slow process. So, you slowly adapt over time.

You almost grow into your new self.

Everybody looks into the future with some trepidation. The future could be good, it could be not so good. Who knows…….

So, prepare for the worst and hope for the best. And keep wearing a smile. 😊


itsmewithms
2 weeks ago

@oopsie, What you are experiencing is a pretty normal course of MS. I was Dx in 2005, so 14 years ago, at the U of M in Minneapolis neurology Dept. I was put on Copaxone as it was what was available. That held me for 11 years with a few flares that were quickly stomped out with massive prednisone treatments administered over 5 days.

I had active lesions at the time of those flares but also had a few more lesions that had no noticeable physical symptoms. This and the indentations at my injection sites resulted in my Neuro (the third one in the course of my disease) to move me to Rebif. That gave me initial flu like symptoms but no new lesions in the last 3 years.

That sounds like good news but I feel a gradual decline. My neuro said that I have likely transitioned into SPMS which there is no definitive blood test or anything but just a review of symptoms. To get a second opinion I spent most of a week at the Mayo hospital in Rochester, MN to see their Neuro Dept. I had several appointments through the week with specialists and hung out at a friend’s house. They agreed with my Neuro’s assessment and recommendation to switch to Ocrevus. I had my first infusion last Wednesday and moved off Rebif.

Over time and the course of MS it may be necessary to switch up our DMTs. If you have transitioned to SPMS it may be time to discuss with your neuro
https://www.healthline.com/health/ms/ms-and-age#4

I’ve been a very physical person as well but my addiction is more land based 😉 I’m into horses and riding like dressage and eventing/jumping. When I had my daughter 17 yrs ago that was pretty much shut down due to work demands on top of parenting. Now that she is more independent I’d like to start it back up but don’t have the mobility or strength I once had. I rode her pony last week and hope to do more as the weather (in WI) allows but have switched more over to the management of shows and photography of the horses. So still involved in a fashion but not jumping myself- also a transition I see many of the people I competed with and against as we all age together…I just have additional complications…think of it that way 😉


itsmewithms
2 weeks ago

It looks like there is a Mayo in Seattle but apparently they aren’t as specialized in Neurology and MS as they are in Rochester or Jacksonville. I see a “Swedish Medical Center” that pops up. Not sure where you go-


oopsie
2 weeks ago

Thanks so much for all your comments! Yesterday was a dark day for me as I am usually pretty up beat. I have an appt with my MS Doc in January. I will talk to him about alternate meds. I’ve been on Copaxone for a long time, do he probably will tell me to stay the course. I also have to make alternate plans where I can still be involved.


julie_conway
2 weeks ago

Hi @oopsie! This is my first day here. I to, have been very active. I have remitting relapsing MS, diagnosed in 1996. I had several hospitalizations early on but not since 2013 now. I’ve had smaller exacerbations and stayed home on oral prednisone over the years but not too many. I am very blessed. I was a rappel and zip line instructor for The Girl Scouts for 10 years after my diagnosis. After, I became an outdoor trainer for the Girl Scouts for another 10 years. I currently have the flu since Tuesday, today is Friday. I’ve talked with my neurologist nurse and she called it a pseudo exacerbation that I’m having and should improve as I recover from the flu. Lots of numbness and tingling, weakness, fatigue and some cognitive problems. UGG! Hope you’re doing well today and hope for you better tomorrow’s…


karlsohare
2 weeks ago

[email protected] iv felt like this too. But I decided to let this ms know that ms has to learn to live with me!! And not the other way round.. in reality I still do all my things I want to do but I pick an choose which ones to conquer.. it may take me longer to do things. I like hiking but I just take my time now and sit down and have a little rest as an when I need to.. save your good days for your adventures and your bad days resting it’s all about finding the balance x

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