New here and desperately need advice

[maxine23]

Have been diagnosed now for about 20 months and have found it to have been a real roller coaster of symptoms, emotions and no real answers! So I do hope you guys can shed some light.
I see a really good neurologist but find that most of my questions are answered with "we don't know" which makes me even more worried about the future.
Also the advice given all the time is think positively - this is so hard when one doesn't know how one will be the next day.
There are better days when things look brighter and then I feel guilty as though I am in denial.
Do hope I am making sense with this ramble but just so confused at the moment.

[JerryD]

You are in the right place. I have been on this board for about 5 years and your post is typical for someone who is newly diagnosed. There are a lot of unknowns and all of us with MS discover these unknowns, every day. Good luck

[Alicious]

I'm 3+ years into this, so still a newbie of sorts. I'm finding that I'm developing confidence in what tomorrow will bring. I know that everything could go to hell tomorrow, but it's not actually likely to. Every body and every person is different, of course, and it's scary, but there is nothing to be done for that.

I guess I'm just learning to accept that there are things that I can't have answers to. I don't like this fact, but it is a fact, and I have a life to live in the meantime. It is what it is, and I'm choosing (to the best of my ability) to let it go. Practicing this is very much a work in progress.

The "stay positive" talk isn't all that helpful to me, and it usually offered by people who don't have MS. It is meant kindly, and there is something to be said for not dwelling on it all the time, and in trying to stay upbeat. But psychologically, I don't think it is healthy to ignore our fears and the reality of life with MS. But you can't be in that headspace all the time, so those days of positive thinking aren't denial, as I see it. It is finding your own happiness and resetting what it means to be OK after your diagnosis. It's OK to have those days. Hopefully, those will be most of your days at some point.

I also went on antidepressants for awhile while I figured stuff out. I needed to not have to think about it 24/7, and those months on those meds really helped me to develop new thought patterns and to wor through a lot of my fears. I'm not saying this is the right path for everyone, but being diagnosed is a big thing, and it took me nearly 2 years to ask for help.

So, I guess this is a long winded post saying, "I get it."

[HobbitHead]

The thing is, that they don't know.

But quite frankly, any human who thinks that they do know what tomorrow will bring is fooling himself. Anything can happen to anyone at any time. And we are no different.

I can empathize with where you are coming from. There is a sort of grieving process at the beginning of a diagnosis.

But you must also realize that things can be better than what you are expecting. There isn't anything wrong with people thinking positive, but I like to think of it more as being grateful for what you do have.

[maxine23]

Thank you

I really do appreciate all your helpful comments and advice.
I am sure it takes many months if not years to accept this diagnosis.
I suppose that one has to expect the best and prepare for the worst. I certainly don't want to spend years worrying about what is going to happen to me tomorrow/next month or 10 years down the line. But on the other hand I cant see myself just getting on with life and not thinking about MS 24/7.

I think we have got so used to going to the Doctor and expecting a quick fix that it is quite a shock to realise that there is very little they can do apart from drugs that may or may not work and have so many side effects.
Would love to hear what strategies you may have formed to get you back to living a reasonably normal life !

[Fed Up]

In my case, it is probably patience and mmj. I certainly didn't accept my dx with glee. However, it made the last 30 years make more sense.

I was probably diagnosed about the same time as you. I no longer think about it, all the time. It seems I have been training myself well.

If it is too hot, I don't go out and really don't think about it and try to busy myself with other things and visiting on the internet.

My balance issues were constant and is what made me constantly aware that 'something was wrong.' Fortunately, my balance has improved a great deal.

It seems with the balance/dizziness issues, I don't seem to "think" about energy conservation and falling. So it is not a every minute consideration, I am getting a desperately needed break from the worry of it all.

In fact, I was able to attend an event about 20 miles from home this past week-end and am so excited, I made it thru. I did buy a 2 day pass ticket and wasn't able to go the next day, until way late.

Waiting to get into the event a few people I know from my mmj activism were there. We were visiting and having a good time. Just before the place opened a worker for the event came and asked me who I was with, I told her.

She said, "Follow me." we did and she let us in the unmarked handicap entrance. I was using my rollator so I wouldn't get so tired and people couldn't knock me over, so easy; and I would have a seat with me, at all times (i did need it).

Going to the front of the line made me pretty popular and one of the guys, stayed with me all day. It was really cool, for me. I had no clue they were going to be there. So, I had friends around to help me along. For once, using my walking devices actually helped me psychologically.

I pretty much quit fighting myself and turned more toward 'protecting' myself from the things I knew would be an issue. Plus, I have become more verbally direct and have less time to beat around the bush to make a point.

Now, I am resting and too tired to do anything else. It was so worth it for me, to allow myself to get so exhausted with my fatigue--always an issue.

The main thing that really bugs me now is, my impatience. I get tired quickly and it seems to come out with some anger and frustration.

Must admit, I am coping much better and I sure hope you Maxine, get to that point, soon. fed

[Marco]

Hi Maxine!

Unfortunately, each person with MS has a different, varied and sporadic disease course. The randomness of our lives is enough to drive some people bonkers. Doctors can only hope that individually their patients do better than average. Surgeons generally "fix" their patients, but MS doctors generally become coaches and prescription pads for their patients. They cannot tell us how we will be doing next week much less in two years. I am glad your neurologist is honest enough to say, "we don't know" instead of making something up to look smart or try and get rid of you.

It's maddening to say the least!!! Since the future is unknown we try to shift our perspective to the present and to make the most of our day-to-day or moment-to-moment activities. You can still plan for the future, but understand flexibility is essential coupled with a whole lot of "grace" for missed plans. My wife and I might celebrate a holiday a day late now and again and just realize the celebration is more important than the calendar date. In other words, our priorities have changed and shifted for the better.

In many ways, MS is like premature aging -- we have physical and mental difficulties that someone years older would have. When you ask senior citizens about their regrets in life, many will tell you they worried about what wasn't important and did not do "this or that" when they had a chance. Let MS be your excuse for doing the important things earlier in life and to not obsess about senseless things. The mental gymnastics of worrying/anxiety/stress makes MS symptoms worse so being able to relax and enjoy life is important. Focus on the things you can control to improve your situation; diet, sleep, exercise, stress management, medications or supplements, etc. The healthier you are to begin with the quicker you will rebound from the things you cannot control.

In time, I hope that MS becomes the catalyst for you to experience more of life and not less of it. It's not always easy, but pressing forward is so much better than letting uncertainty rob you of your opportunities. Hang in there as it does get easier.

Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present.