Recently I am feeling like I am simultaneously going in two mutually incompatible directions. On the one hand, I am embarking on big and exciting new projects at work that are longish-term commitments and that would suffer if I dropped out in the middle. We are spending money like we are going to continue to have the income from my job. On the other hand, my body is continuing to deteriorate. The distance I can walk seems to decrease every day. I seem to again be falling down the rabbit hole of fatigue and cog fog, increasingly sleepwalking through my life.
I feel like the responsible thing to do would be to make more realistic plans and yet I continue to plow ahead in some kind of weird denial. On the one hand, it seems self-defeating to prematurely surrender. On the other hand, when I have finally made certain capitulations, such as buying a scooter, I find that I wish that I had made them much sooner.
Although I am at an earlier stage of the disease, I do understand how you feel. This past August I entered graduate school, which is a two-year academic commitment, but also a lifetime commitment to a new career. I am taking out considerable loans to afford grad school, and cannot help but wonder how many years i will be able to use the degree I am earning. 10? 15? 20? I'd prefer to use it for 30 or more.
Just after my semester began, I posted abut my uncertainties and many here provided moral support. I know you will receive the same response. The only thing I can add is that we take on these projects because we know we have something to contribute and we must trust ourselves based on the successes we have had in the past. We cannot give up prematurely. The world still needs us. We may not be perfect, but there is still much work to be done, and who better to do it? Don't waste your remaining potential out of fear or what you may lose someday. You are amazing, unique, and special, in spite of a few so-called imperfections. I happen to know that you are brilliant, too - please don't let that go to waste.
I hope that helps at least a little. I will be thinking of you as I continue on my path.
I do not remember your exact diagnosis, sho - but your description sounds like you may have had a recent swift decline in walking abilities, cog fog, and fatigue? Could you be experiencing a relapse? Perhaps a conversation with your neurologist might help you decide? Maybe around of steroids would be useful to see if that brings you back to baseline? Just thoughts I had upon reading your post a second time. Best wishes.
I get where your coming from, um not sure schizophrenic is the right description of it though. :o) For me it seems to be a rather common theme, swings and roundabouts of life as it is now i'm thinking. Its when i'm feeling more human, that i embark on projects that i wouldn't even consider when i'm struggling to function and then the inevitable happens, I take on too much and over do it. Pay backs a &itch!
My theory is to go for it whilst i can, steeling the moments in little blocks, knowing i'm going to pay but needing those moments way to much to not go for it anyway. I think its highly probable that i will totally loose my legs one day, maybe not the next relapse but i'd have to be brainless to not see the direction i'm heading. Its just getting harder and taking longer to claw my way back now, lol but when i do (like now) i can't help the joy i feel from the simple things, lol like driving my car.
I dont know why it is, maybe chasing normal is more a necessary personality trait, that helps to keep us from curling into little defeated balls of woe, when the going gets tough, lol i'll like to think it is.
ps finding your tipping point might help to keep the fatigue less brutal and minimise the payback.
No one knows what the future holds. We with MS get an idea. It is not denial to keep living as normal a life as you can while you can. My life is very uncertain. I have PPMS which usually becomes debilitating in one's 50's, I have a dangerous form of cancer with a short survival rate and an 85% chance of developing breast cancer in both breasts. Genetics are stacked against me.
A month ago I had a choice of giving up or, waiting and worrying about what could happen with each scenario, or living my life like most of it is normal. I chose the last option. My Cancer Doctor thinks I am nuts. He says I am not in reality. I was looking at reality so hard it scared the snot out of me. I looked at all my options and realized I needed to live as much of my life as I can while I can.
I have known about the MS and chose to not have MRIs or watch the progression closely. I will know its there when it happens. I have done all the treatments for Ovarian Cancer that are known to work. If I had not been BRCA tested I would not be looking at breast cancer at all. I do not have breast cancer now.
I am the biggest obstacle in my way. I think I can't do things then I find I can if I try. Two weeks ago I was in bed 22 hours a day. Yesterday I rode a horse and went to a party later. Two weeks ago I was taking in less than 500 calories a day, this week I am eating all the Thanksgiving food I can get my hands on. Two weeks ago I thought I would never enjoy anything again, now I am happy.
I am planning on starting my business again. Yes I am fatigued and can't stand for long but I need to plan a future.
Thanks, everybody, for the helpful feedback. As Alex points out, no one knows the future. Nevertheless, it can be hard to ignore the effect of MS on the odds. However, as JJ said, we seem to be hardwired to chase normal.
Jane: I have a more progressive course and have been more declining than stable for the past year. I am continually feeling like I am about to reach some sort of breaking point, but thus far have managed to adapt around my lost capacity without a major change.
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