Taking MS seriously

[Corriel]

Hi all, I am struggling with a lack or urgency in taking my April RRMS dx seriously.  I have started DMD therapy and other than fatigue that can be severe and occasional vision issues and muscle twitches I feel fine.

Since I learned that I didn't have a stroke (my initial dx), my attempts to exercise and lose more weight are non-existent.  

I know that any day my disease could worsen but I can't seem to feel the urgency for better health that I had been feeling prior to the MS dx.

Is this denial? Something that is typical?

Any thoughts or words of wisdom would be greatly appreciated.

Thanks!
Corrie

[Corriel]

I joined Simply For Life last July and even without exercise I was losing weight steadily so I quit smoking.  Then my MS symptoms hit and I foolishly started smoking again and I haven't been ableto stay on track with the eating so even though I am not gaining I stopped losing.

My SFL consultant has been patient but he is frustrated that I am not trying harder. Thanks for the tip about the naturopath. I'll look into that this week.

[aspen2]

I've been gluten free for 12 years -- it completely reversed a bunch of symptoms I had after my son was born.  I'm wondering now if it was the beginnings of ms stuff.  I was also casein free ... but added that back, and KNOW I have a problem with it.  At the moment I don't care lol.

Cann, I'm going to message you with my mfp name -- if you'd like to add me I could use some motivation.   Just let me know who the request is coming from with a message, please.  I'm finding the fitness thing going two steps forward, three steps back (knee problems, then I catch back up, then I'm out with hemiparesis, then I catch up again, then I go on meds that make me gain wait, then I lose it, then my knee acts up  ... ugh, exhausting and disheartening.

[Cann1980]

Corrie,
I feel the same as you at times... I am a bit like ghost though.. The roller coaster of emotions.  
I was all about gluten free when I first started down this road now i am just like ... Meh... I just ate a handful of m and m peanuts ... That's not the road I want at the moment but I just can't find the motivation.

There is a place called healthy path close to me .. I think there is one in your area too... They do naturopath testing to see what you body does and does not like .. Allergies etc ... I plan to go that route instead of full in gluten free.

What where you doing before? Food wise and excercise wise? Maybe you just need aomething new!!
I am very unmotivated at this moment. But if you want someone to start with I will team up with you!! :) we can get our motivation in numbers!

And fitness pal is great an I did not know there was a ms board in there.. I will check that out :)

I love Lisa's advice too! The middle raod is where we should all be :)

[LisaJF]

I for one, would need time to adjust going through what you have been through and in such a quick time.  As you said, there are others that wait years until they get an answer to their issues and not all are MS diagnoses.

I think the best thing about whatever you may have is taking that control over your life and how you decide to deal with it.  You can take the high road, low road or take the level road.  To me the high road is shot out of the gun running start and constantly trying to go go go, which in the end, you end up burned out. The low road to me is more of a passive route, not caring too much about this or that, just enough to make things in life easier for you.  The level road...well easy to visualize, you walk with purpose and knowing that while you're on this even plane, there may be potholes or bumps in the road along the way, but what do you do when you get to that point? You pick yourself up and continue onward.  At least that is how I look at it.  

I'm not perfect nor do I follow half my advice sometimes.  I too get anxious at times and have the need to come here and express my thoughts and worries in hopes people can allay them because I'm doing a horrible job myself. LOL

You take care of yourself you hear?  And don't be a stranger!

Lisa

[cubbiesfan918]

Thinking of you Corrie and sending well wishes your way!

[Corriel]

Thanks so much! I think thatmaybe it is time to step back a bit. So much has happened in a short time. I am one of the "fortunate" ones who had a dx in six months. All of that pushing doctors and dealing with the symptoms that were atypcial in MS may have taken a bigger toll than I thought. I decided to splurge and order a Fitbit. It counts distance, steps, acts as a food log, and measures your sleep quality/quantity. I should have it in a few days. That's awesome about myfitnesspal.  I will check it out.

Take care!

[Corriel]

Thank you Lisa! I am feeling determined about the DMD regime so I hope I don't feel the need to slip up on that side of things. I think maybe I just need a break from trying so hard to incorporate everything at once. As you know, a lot of life changes come with our disease and I have been running myself ragged trying to find a way to slow down a bit, so it's kind of a vicious cycle right now.

[Corriel]

Thanks Alex! I think I need to settle down a bit and stop trying to pressure myself. You are so right that doing everything "right" does not guarantee a good outcome with health. I hope you get the trial you are trying for!

[Corriel]

Thanks! My symptoms for dx were a weird vision loss in  both eyes (not ON) and cognitive issues. When the vision loss occurred again thankfully in only one eye and they ruled out tons with blood tests I had a spinal tap showing a lot of obands and inflammation.

You're definitely right about the roller coaster of emtions though. Maybe I just need more time to adjust.

[aspen2]

I think the diagnostic process is exhausting.  I know I've been pretty much obsessing over NOT having any sort of diagnosis, and trying to figure out the best way to present info to specialists -- it is all-consuming.  I could totally see getting a diagnosis and just wanting to escape from it from a little while.  Perhaps you're in the same boat!

Glad you're feeling pretty good.  I don't think I'd worry to much about taking a mental break from all things ms related.

I'm still committed to the health and losing weight thing no matter what happens -- that predated my symptoms and I'm not doing it for reactionary health reasons -- I'm done with being "generous" (in the weight sense, not in the character sense lol).  But Lisa is right -- you will want to at some point again, I'm sure.  I've found www.myfitnesspal.com very helpful for this -- and they do have an ms community if in time you are done your mental break!

[LisaJF]

Great advice from everyone.  

I would think that it is normal to feel the way you do and to be in somewhat of denial, yet know in the back of your mind you hear the diagnosis uttered from your doctor's mouth.

I think the one thing that is most important priority is to adhere to the DMD regimen and take it no matter how tired you are doing it for such a length of time or if you're start feeling better and your MRI's are beginning to show no advancement of lesions.

I realize it may be easier said than done, but know this, if you begin to miss doses either by accident or on purpose (DMD), or stopping it for awhile to give yourself a break, you are giving the disease a chance to do what it does best - demyelinate.

As far as finding the motivation to lose weight or exercise at this time, don't fret over it because when the day comes when YOU will want to, YOU will do so.  And if you don't, that is fine too.  

My words of wisdom isn't always the best nor does it come out right at times either. LOL.

But I did my best.

Lisa

[HVAC]

You do what you want to when you want to. I have MS and cancer and people keep telling me what I need to do for my health. Mostly stuff like eating seaweed and coffee enemas.

I cleaned up my diet and started exercising when I was ready to years ago. I started off making changes slowly. Do things at your own pace.

I do not drink, smoke, I eat a healthy diet and exercise but I still have MS and Cancer. Now I do what I want and smile at everyone giving me advice.

I feel much better with the weight off and when I exercise so I do those things. I feel lousy when I drink or smoke so I don't. Be true to yourself.

I eat all the ice cream I want.

Alex

[ghost39]

What were the symptoms which led to your diagnoses? Sounds like you are in denial. I was diagnosed end of May with RRMS and felt like that too. I have some bladder issues and I think its beginning to sink in. My emotions are all over the place, happy, sad, denial, happy. I'm guessing its going to take time to sink in.