mormiles wrote:Thanks too for the reminder about realistic expectations. It's the same advice I would give some other progressive MSer or their caregiver, but at times like these, you need to hear it yourself.
I don't know if you read my blog or not, but the expectations portion of it has really taken me this long to really come to grips with. Now I must admit to being a bit more impatient than the average bear, but I've kind of been chronicling my journey and coming to what I call "calm acceptance" of all of this. What I've come to realize is that there is a distinct possibility that NONE of what I got will get better. Dr. Dake and my neuro. both could not show my a specific, dead nuts, there it is, lesion on my last MRI. There were just abnormalities in the gray or white matter (I don't remember which) and some 'uneven lines' in the one area right in the center where you have like a clearly defined arc. Boy that sounded scientific. But at any rate, what has helped me mentally is to realize that maybe we just stopped progression. That's awesome. Now the only way I can get better is to work it out. I don't know if it's what it's going to take, but that's where I'm at now and it has really helped my angst. It is going to be a mighty struggle. I have 0 energy at the end of the day, yet I still need to exercise.
We just had surgery. It's simply human nature to put a stimulus /response' dynamic on it. We had A done, now it's time to expect B. But this one maybe just stopped the bleeding and didn't 'fix' anything broken like a bone or something. I feel like I'm failing in explaining this, but I know right where Steve is at mentally.
Take yesterday for instance. When I got home from shoulder PT, I had to blow leaves. Well I was just going to do a little bit (this isn't like rototillling!) and it turned into more. By the end of it I could literally barely keep myself upright my left leg was so weak. So that kind of stuff is still there in all its' glory. But then not 45 minutes later, I was recovered enough to do what I had to to finish up the night including a number of trips up the stairs. So while the MS weakness and all of that is still there, the recovery time is not only quicker, it sticks. By that I mean once I was recovered, I was recovered. It used to be I would recover enough to function, but I dare not do too many trips up the stairs of walk much at all since the recovery was very 'fragile' and I could get flared up again way easy. I think that is the kind of stuff Marie talks about. It's so subtle, but there's a difference. It's not worse and you don't get all down in the dumps.
Plus "F" Coumadin. I supported my leaf blower with my right thigh to take some weight off of it. Well you should see the damn bruise on my freakin' leg this morning. It's monumental! I hate that shit, but it was just a reminder that the stuff is nothing to brush off. I mean it wasn't banging against my leg or anything. I know that we all had what we thought were realistic expectations about this just stopping things from getting worse and all of that. But I also know in our hearts we yearn for improvement. My gut feel is that it's on us. That will also be a long road for all of us since just getting to the point where we can exercise to any meaningful degree (gaining ground on conditioning) could take forever. I mean I can't hardly ride a damn stationary bike for 15 minutes without needing to sit on it for about 15 minutes more to make sure I just don't fall over when I get off.
It's a weird deal. We just really have to be patient. Prod Steve to do what he can. I don't know you guys so I don't know if you need to do that. But all I know is now that I've started exercising again, albeit very lightly, I feel better.