How do you do it? How do you keep going?

[0lala0]

I'm newly diagnosed, (last year) and despite the title of this, I'm not depressed or anything, but I don't know how anyone does this for 20 or 30 years.
Spasticity. RLS. Numbness. Pins and needles. Temperature sensitivity. Itching for no reason. Brain fog. Insomnia. The pain. Oh the pain of all of these these things. Then pile on doctors that don't listen and friends who pull away, spouses that just literally give all the have until they have no choice but to retreat.

How do you keep going? How do you push through?
I'm in pain now, but in a generally happy place in life, but how does anyone do this for so long? How can anyone feel like this, and worse, for 20+ years?

[Vicfreeze]

What keeps me going is faith and all that it includes. Life with MS can sometimes feel like a non-stop uphill battle, but there's always faith and the hope that tomorrow may be better. I know during the first year following my diagnosis (after a rather severe exacerbation) it was more than a little difficult and was complicated by a combination of grieving over the functions I had lost and the constant frustration of having to explain the disease repeatedly to people only to be dismissed with "but you look fine to me" but I didn't give up. It also helps tremendously to find others with the disease that can genuinely relate, even if its just one person who "gets it".

[Thinkimjob]

Well, that's the thing with RRMS - it is not unrelentingly terrible.
I've had it for 18 years. Time just passes. My 93 year-old Grandma says, "I can't believe I am so old. I don't feel any different. I am still the same person, but all that time has gone."

There are plenty of good weeks, months, years with MS where you truly do feel pretty much normal. You can go out, do stuff, party hearty; you just feel tired.

You get used to tingling fingers, numb feet, fatigue, because unless you are lucky, none of it is going away for good.

Where it goes pear-shaped is when your flares start to leave lasting damage, and over time you start to notice you're almost continually getting a little bit worse from day to day. No more remitting. Plenty of progressing.
This started with me about five years ago.

All the symptoms you listed sound kind of like my good old days. Not that I enjoyed it much at the time.

You find a reason to keep going, even if it is only pure stubbornness.

[DonnaD]

0lala0 - I was diagnosed 30 years ago right before my wedding and I keep going. I have 5 kids and a great husband. I don't work (collect more disability than I'm actually entitled to the way I am now). So you can look at the positive side - I never would have been a SAHM but have been for 20 years since disability covers enough (not tons but enough to not take a part time job instead). My kids who now are 14 - 26 yo are the nicest most giving compassionate kids/grown ups. I always tried to not put too much on them but as they grew up they came to understand that the whole world is not out to serve them and they have to give and not only take.

0lala0, you were just diagnosed last year and you have so many symptoms? I started with much less and just slowly got more. Do you go to a good neuro preferably in a MS center? There are more and more drugs available these days to slow down the progression of the disease. Make sure you have an MS neuro.

I heard my teenage daughter tell her friend how lucky her mother is cause I touch hot things without it hurting me . I told her that's not exactly true - My hands are a little numb but they can still get burnt.


0lala0, there are people out there with so many illnesses. Some are a lot worse than MS (though it may not seem that way).

You learn to adjust and take things day by day. But make sure you go to an MS neuro so that you're always getting the best/latest treatments. For example - I haven't had a single exacerbation since I started taking tysabri (3 years ago). Provigil really helps my fatigue (doesn't totally cure but helps). Ampyra really helps my walking. Many people get good results from PT and swimming.

I won't lie, MS is a big part of my life but the important things are still good

[MSW1963]

I chalk it up to shear stubbornness. Considering the alternative which would cause more pain and grief to loved ones. Hope that doesn't sound too dramatic, just a straightforward honest response.

[mercadies25]

Just Went T Neuro Tuesday Thinks I Have Progressed To Spms, But Wants To Wait Till On Tysabri For AFull Year. 5 More Months.

There Are Many Days That I Ask Myself The Same question. My Answer, Hubby, Kids, A Few Close Friends And My Pups. If I Give in Who Will Keep Them In Line?

It Ain't Easy, Good Luck!

[Sir-Voor]

Embracing YOUR path and have faith!

I was lucky and got DX with RRMS in 2002 with such mild symptoms, I just thought I was a little clumsy, lazy and the three brief 30sec muscle spasms were from a pinched nerve.

I never had much physical pain, but over the years I had Spasticity, Numbness, Tingling, Brain fog, Drunk walk, Heat sensitivity, slurred speech, and such, and like you said I just pushed through it, working hard to stay physically and mentally active.
But I had not word hard enough to stay physically healthily because by 2007 I was 218bls and had to go on High-blood-presser meds. So I regrouped and lose 35bls and got off the BP meds by 2009, and that help me keep going

The brain-fog actually helped, for with those thought-blinders on I was able to look inward (focusing on meaning of life type stuff) and grow spiritually.
I had faith, in my life’s path.

Each symptom seemed to have a spiritual growth and once I figured it out the symptom eased. Call it what you want but in 2010 I got lucky, blessed, or I finish the lessens I need a lot of my MS symptoms for and started Ampyra and I started on a new path.

As each symptom lifted I started growing, I improved my diet even more, (bye, bye sodas hello more fish and spices) I started be active in the TED talk community to stay mentally active, and never liking gym workouts I’m now doing what I call productive workouts. (Landscaping, gardening, and normal stuff but with attitude. Like walk the dog with ankle weights)

I has not been easy but now I’m back to mild symptoms.
By no means back to normal; in fact, I now feel stuck in between the health community and the MS community.

Anyway that has been my path so far and based on that I would recommend embracing YOUR path as lessons, keep pushing to stay physically, mentally and spiritually healthy and active. And have faith!

[0lala0]

You guys are amazing. You give so much hope and I thank you for that.
The symptoms I listed I have experienced, but have come and gone in the three flair ups I've had in the last few years. (Some prior to diagnosis) Yesterday when I finally gave up on the painful spasticity I was feeling, I started praying. It didn't heal me or anything but I instantly felt less pain and shortly after, finally had to bright idea to take a billion Advil and apply a heating pad, so I'm doing better today. :-)
My doc did say that if Tec doesn't do what it should she's going straight to Tysabri next. I was too afraid of it for her to start me on it right out of the gate.
I'm pretty stubborn myself. Sounds like that might help in this area of my life. Just keep swimming.

[JerryD]

To paraphrase a friend, 'you just have to believe, just have faith'! Good luck

[KitOP]

I was diagnosed in 2000 and am still RRMS. You have good days and you have not so good days.

If you find that you can't do something anymore, or is difficult to do, you figure out a new way to do it. I don't concentrate on the things that I can't do, but rather the things that I can do.

You have this precious 8 yr old - that is reason enough to keep going and fight the fight. There are so many reasons to keep moving. Life is for living, no matter how you can do it, do it!

We find strength in places that we never knew existed. I have discovered that people with MS are among the strongest people that I've ever met. We are determined!

Good luck with everything - hang in there! You will find many friends here that are here to help.

[J-Bo]

I chalk it up to shear stubbornness. Considering the alternative which would cause more pain and grief to loved ones. Hope that doesn't sound too dramatic, just a straightforward honest response.

Yep, what MSW said.

[Seasha]

We find strength in places that we never knew existed. I have discovered that people with MS are among the strongest people that I've ever met. We are determined!

This is so right on and I agree! We are warriors and survivors. I also agree that if there is something we can't do anymore, we find ways around it or do things differently. We adapt. After living with MS for 26 years I have only made it this far by adapting and staying relatively positive in spite of it all. I don't even like to label myself as disabled and instead use differently-abled.

I also believe that staying on a treatment plan, eating good healthy foods and exercising (adapted to your abilities), and taking essential supplements all add up to a healthier you and a healthier outlook! Hold onto true friendships and family as they are our lifelines for support - just like our MS family here on MSWorld!

0lala0 - You keep that stubbornness - it will serve you well

[KSeraSera]

I laugh. A lot. And I laugh at my symptoms, a lot. I know it makes my friends and family uncomfortable sometimes, but eventually, they laugh with me. And I look at all my blessings each day, especially the bad days. And I'm talking about little blessings and things that could easily be taken for granted. And I have pets, lots of pets, who need to have someone take care of them, so I keep going for their sake. And they give a great deal back to me in the form of comfort and love.

[poppydarling]

I'm in pain now, but in a generally happy place in life, but how does anyone do this for so long? How can anyone feel like this, and worse, for 20+ years?

Since we don't know what the next minute will hold, let alone the next day, month, year or 20 years, I've learned to not worry about it (at least not much :-) My therapist recommended mindfulness training, and it is been so helpful in becoming more present in the now (which is really all we have) and less anxious about what hasn't even happened yet or likely won't.

Doesn't mean that with every emotional or physical change or loss that you don't become a bit anxious again, but I think all of life is a bit anxiety provoking on some level. And I know for sure I'd rather have my problems than most other people's!

[kathyj1]

keep seeing your glass half full

No not a Pollyanna. I was bitter the first few years but glad to finally have diagnosis after years of weird problems off and on. Diagnosed in 1991 & dr then advised not telling many people but have found much family & friends support since finally 'fessing up & not being afraid to discuss. I try to remind myself EVERY day that there's always someone worse off than me. You have to try to find joy and feel grateful for something every day or it can totally overwhelm you. Sometimes you can't look further than the next few minutes. You touched a lot of people by your thread!