I am only a 3, and about half the time 3.5, and my neuro. is also telling me that maybe I am SPMS. I'm not really sure at this point that I care if it's RR or SP. I have never had symptoms (real ones) go away after they rear their head. I have some transient tingling and numbness that comes and goes, but for the bladder, bowels, eyes, balance, and vertigo, once they showed up they were here to stay. I really don't know if that makes me SP, but like I said I don't really care since it would be futile and counter productive to agonize over that.
We sound very much alike in the things we are trying to "do". I am also figuring out how I am going to remain the joyful spirit I've always been while my body deteriorates. I'm not finding any easy answers, but I must try incredibly hard because I don't want to transfer my struggles to my 11 year old daughter. I can still laugh and crack a joke and be a good time, but figuring out a way to obtain peace of mind with MS is going to be an enormous challenge. I am a Christian but have never been one of those that could just put everything in that basket and suddenly be ok with it all. I feel like I have a much bigger role in it all.
On those good days I think I have it figured out, but then a real shite day happens and it's back to the drawing board. I think I need to forgive myself for having MS. That sounds odd, but there is a feeling of guilt that accompanies all this for me since "I look so normal" except when I'm walking into walls and furniture. It's almost like I can't accept it all until it really puts me down. In other words it's like I expect myself to be able to do more even when I can't. I really need to take stock and forgive myself for not being able to do what I cannot do.
Thanks for being there. I really relate to your posts.