No they haven't. I can't say they've gotten drastically worse like I've had a massive attack or anything, but I do not feel like any improvement at all is happening. I'm in a real bad spot as I write this. I took the entire week off to keep an eye on things since everything is feeling very precarious right now. When I say that I mean it takes almost no effort at all for me to need a rest. We take a camping trip every year on the 4th weekend. Just going up and down my basement steps twice today to try and prepare has absolutely tapped me out. It's so frustrating. I don't know if I'm getting worse or not. It's just that I can hardly do anything without it making my legs go to rubber, my eyes turn to fog and, as always, make me have to pee. And my constipation has gotten worse over the last couple of weeks.
I just don't know. It could be mental I guess because I think we can feel markedly worse when our attitude sucks. Mine sucks right now, but I'm not so sure it's not because I can hardly do shit right now. I mean I'll get up from reading for about an hour and my legs aren't feeling too bad, so I'll decide I'm going to do something that requires walking. I'll go down the stairs loaded for bear, ready to actually maybe do a load of laundry. By the time I barely even get started I'm totally worn out, falling into every GD thing, holding on to everything to keep from going down, confused, legs have turned back to rubber like they were before I sat down to read. I mean fucking take my ability to be mobile or kiss my ass. Don't make me think I can get around but make it hurt like hell in five minutes to where I have to sit right back down and take another huge break, I just don't know how much more of this I can take.
Somethings got to give. I'm on the razor's edge of major life changes. I mean it's like Robbie's version of the EDSS the other week. There are days you think maybe you can beat it, but lately those have been coming few and far between. The amount of shit that has to be dealt with to get to work now demands that I have to get up 2 hours before I'm due in. That's what I mean about being on the razor's edge. One more thing to have to deal with and the scale will have tipped to where I can't function without serious accomodation. I mean I would even take a cane right now, but my problem, although stronger in the left leg, is bilateral and after a little walking now, both legs don't want to go.
I'm sorry I sound like I'm having a huge pity party on this post. It's just that I know I'm getting the goods now, but stuff keeps happening. I try to look the other way at it because I want it to work so badly, but I just can't ignore the fact that I'm functioning at a lower level than I was a month ago. I mean I can still use all the things I could a month ago, but the line I have to cross before a good rest is required is getting closer and closer. Pretty soon I'll feel like this without effort because that's the way this whole thing has gone for me. OK at rest, but after effort it all shows up. It used to take a full day and a 5 mile run. Then a 3 mile run, then 2, then none, and now it's just going down the stairs. The line keeps getting closer and closer. I use denial in a way that helps me get through the day, every day. Using it right now may be more destructive as I have a huge decsion to make about staying in this trial or not.
I'm going freaking camping in the morning. It's 5:30 right now and after an entire day, I've gotten absolutely jack shit done. My wife has to do it all and that just kills me. This shit is getting ready to turn my life completely on it's ear post haste and I haven't been quite to this point yet. I've always managed to just get enough done. Well now it's not like that. I am going to have to ask for serious amounts of help to do everything from my family and friends. I know this is something everyone who has MS that gets to this point has to deal with. Now I have arrived here, and I don't like it, not one bit. No one does/can, but you just aren't equipped to deal with it no matter how much you think you've prepared. You read about it, try to imagine it, but it 'ain't real 'till it gets here. It's almost on me now.
I've decided my litmus test is this weekend. If I do as well as I did last camping trip, I'll stay in for a while longer. If I feel I did not do as well, then it's time for me to just admit that Tovaxin doesn't work for me becasue I've had four shots now. Then I'll guess I'll get my shit together and go to Johns Hopkins. I'm right at that point where it's getting ready to take so much extra accomodation that I won't be able to handle it all every day. I'm so fucking scared. Take this post for what it's worth since I did already state I'm in a bad way right now. But wishful thinking is only going to go so for and I have to start looking at this completely pragmatically. It's working or it's not. If the answer is no, I have to accept it and try something else, but sitting around hoping and not getting any relief at all is just going to make me worse. It's not working for everyone, and I guess I just have to accept the fact that maybe I'm one of them. I'm not giving up without a fight. I will go to the ends of my finanacial earth to get rid of this and I suppose I still might strike out, but it won't be for lack of trying.