Multiple Sclerosis (MS) Support Group

Whoa deep. At least these harsh words were said by someone who loves you. I don't have too many people in that category and those who supposedly "love" me just ignore my disease like it doesn't exist or get disgusted and say things like "Well guess it is an MS day because it looks like you are having a problem with blah." I have been diagnosed for 11 years but knew I had it many years prior and NO I don't think you ever accept the fact you have this monster. This denial is a good thing but unfortunately MS reminds you on a daily basis so denial doesn't last too long. Readjust - now that is the ticket I guess. I have been trying to be more accepting of my limitations (although others are not so kind) but I think you have to forgive yourself for having this disease, know you are not going to get better, not necessarily terribly worse for a bit, but never "all better" as we tell our kids. I guess you should be thankful you have someone in your life you truly loves you and is honest enough to tell you to let yourself off the hook and go with the new norm and not try to strive for the impossible. Who knows, perhaps in your lifetime they will come up with a new treatment or a cure. Keep good thoughts, do what you can and be grateful you are still able to do that and I guess try this readjusting to the new norm. May your doctors find something to take away your pain and make this journey as "easy" as possible.

Hi, what a friend!! Sooo true ,once we accept is not giving up ,is the realisation that a good day is not our old self, but the new one,once we realize this is it, it doesn't mean we abandon treatment, meds, hope or goals, it means you wake up without feeling a prisoner of ms or your body. You can be happy. Lynne always says ,pain comes to all, but,,,,, and its so true.
When something is happening to one of us ( daugther or me) we just look the other and say ms. This doesn't ruin our day, let it pass or readjust, and continue. This reduces the tears and negative feelings.
Example. When I get a bout of diarrhea, I go out, but everybody knows when I need to go everything stops, run to a bathroom, ahhh, then life continues as planned, no big deal, just ms, continue. I Remember when I breasted my kids, a cry, I stopped, did it continue. Same thing. Backs then I didn't have the option of doing something different , and I don't have it now. I'm happy, mostly stress free, I don't fight daily with ms, I readjust according to the days challenges.

Hope this makes sense
Love, Alma

I think its human nature to hope to feel better and be in pain

Although it can hurt to hear those things, It is brave of someone who cares for you to really say it, with good intentions, and so I respect that.

As for accepting vs giving up... Accepting is not giving up. At some point you have to realize that this is your new reality and accept that so that you are not internally fighting and berating yourself every step of the way. However, you do NOT have to give up once you have found that acceptance. Keep trying new things, keep testing yourself. Just like this pain is your new normal, next week/month/year with the right treatment/exercise/luck/whatever you might find a less painful new normal.

So I guess my statement is that you should accept yourself as you are, but don't give up working to improve yourself and hope for better days. Plan for the worst but hope for the best.

Very often people say things like, "I (or you) are JUST going to have to accept this." It sounds negative to begin with. If you say, "I want to accept this," much different outlook.

"Just" accepting is like shrugging your shoulders and saying, "oh well." It's like being defeated, it is like giving in, it is like giving up. It implies that what it leaves with, or where it leaves you, is somewhere you haven't chosen, it is like saying, "I have no choice," or "There is nothing I can do." It makes the result feel unhappy and uncomfortable and it makes is seem rather final, a finish, or the start of a finish.

If you choose to accept where you are, you can then choose what it will look like and where you will go as you continue to make choices.

I don't know what you did before you got to this point, but for me, I worked several years after dx, and was being affected by MS long before dx. Before dx, I had no choice but to go to work, I did not see an option, so I got up and went and just pushed through. It got harder. When I was finally dx'd, in the back of my mind was the thought that at some point, SSDI might be a possible answer if things got too hard, but I chose to not accept it as an option at that time. When it finally became the reality, I still tried, and actually even now 3 years after approval, to come up with something to do even if only part time. But the point is that no matter how bad I felt, when I thought there was no option, I just did it. And I did not accept the option for a long time and just did it.

Accepting going on SSDI was very hard for me, as it is for many people. It is really still a process that I am going through. Some days I feel like if I push myself, if I feel better, if I can do more things, should I call and say that I am no longer as disabled? It is a constant thing and unfortunately it sometimes means that I have to remind myself that being able to do things in my home, at my speed and with the systems I have created is not the same as getting to work on time, working in a temperature I would not control, not being able to go to the bathroom at the exact right moment...etc, etc. But moving forward within this environment is still moving forward, and that is important.

What would you do if you were a little more pain-free? How would your days change? What do you do now to prove to yourself that you have the option of accepting that you will have pain everyday but that will not define your life? If you say, "Okay, I will have pain everyday, now what can I do in spite of that?" you are accepting the reality of the pain, but not giving up. You can tell yourself you have the option of doing things knowing going in that there will be some pain, or you can tell yourself not to try...either way, you will be in pain.

Accepting what MS has done, and what it keeps throwing at us is hard, we shouldn't have to deal with this, we all wish the other didn't have to. But here we are...these are old, but never worn out and can't be said enough:

You don't get MS until you get MS.

I may have MS but MS does not have me.

The fact that this is not like many things, it isn't "just get through this or that and you will be well," makes it hard. But sometimes I think of it like I have to keep fighting, not denying, but striving to avoid falling into a place where I am simply existing.

It is really hard when often the goals that we have to set for ourselves seem so sad, so basic...things we learned to do almost from the beginning of our lives and that we then never had to think about. And it is also very hard when it is really us setting goals for ourselves and being our own cheering section, that is something MS depends, the isolation. But that's okay...just keep trying.

Accept where you are, this is where you are starting, and decide where you will go from here. Good luck!

Wow, you guys amaze me. Some amazing words you all have. You helped me see things differently.

My friend knows me all to well and while I say I have accepted the fact that I have MS, the truth is I have not accepted my limitations and am WAY too hard on myself.

I blame myself for all I cannot do. I blame myself for not being able to walk with my kids as they bike, or not keeping up with the house as much as I like.

If I ever saw any of you treat yourself the way i treat myself, I would be furious with you. I think it is ok and necessary for you to take it easy and pace yourself. But not for myself. I call myself lazy, a wimp, a baby. I should be able to work through the pain, to will my legs to work, and when I can't I see it as nothing but failure.

I think I have a lot of soul searching to do.

Thank you all for you insights. I must admit, your responses astounded me. All very well said.

Tara, I could have written your last reply myself. I think most of us are harsher on ourselves then we deserve, and expect more of ourselves then it truly fair. I imagine that the world is disappointed in me, but my husband reassures me that the only one frustrated/disappointed with me is me.

I don't know how to let all that go, but if you find out how, I'd love to hear it! Meanwhile, just remind yourself that you are only human, and no human is more or less perfect then another. We are all simply unique.

I think it's all about focus. If all I focus on is getting better then I can't appreciate anything until I am better. If I focus on doing today the best that I can (and some days are way better than others) then I can at least take what I can from that day and feel good about it. As they say, if you have one foot in yesterday and one foot in tomorrow then you are pi**ing on today :-)

I had to clean people like that out of my life forever. It became painfully apparent when I almost died in 2009. One guy called me up and wanted to know why was I not dead yet.

Stand your ground and live your life, with the pain that goes with it.

I believe the pain is but a symptom of the pain of the earth manifesting itself in those that have been chosen.

Sounds strange I know, but you have to believe in something in this life.

Don't let what others say hurt you. You can't.

well Hopeforacure doesn't that just say it all! Kudos!