I understand. My cognitive thing is severe but I try to do what I can on my own terms to stay active and also augment my income. Even my closest MS buddy sometimes doesn't get it. After 20 years of going down hill I've had to learn to let go (not easy) and always a bit of an issue. I hope you can also let go to ease the stress.
I re-read your note and thought I would mention one of my "work arounds", I have gotten pretty good at voice control of my computer so I'm able to do some of my IT stuff since I can no longer type well. I use Wix to create Websites which can be done at your own speed and get paid for. Again just a thought on my part. But please give yourself a perfect day, you deserve it!!
Frankly , most things he does “triggers” me. It’s really gotten to the point I have to let it all go for my sake. When I say trigger I mean outrage that turns into seething resentment and it takes takes days for me to recover! Thank you to MS for that volatility!
He likely says things off the cuff, and promptly forgets!
I’m the one that pays for the anger- I have a lot right now, and I suspect I’m really mad at my MS! And that’s really grieving loss of control!
I don’t want to live like this-so I have to choose my attitude and reframe it (for my sake!)
I so feel for you!!! I know how you feel. Thats what friends say- you would feel better if you would get out. Or as one of my daughters said, when I couldn't go with my husband to her retirement, "you should have come; I would have you out of that bed, laughing, and running around with me." I was furious!!! I didn't say a word. They just don't "get it." No one gets us but fellow MSers. I have been very angry for awhile, but my other daughter bought me the movie, "Frozen," so I go around singing, "let it go, let it go!" They are ignorant, do not listen to us, do not understand us, and one neurologist even denied some of my symptoms were due to MS. I actually printed off an explanation of MS and all the symptoms straight from the MSAA sight and mailed it to her (a MS neurologist!). she, of course, wrote me off as a patient and I wrote her off as a doctor. After several years of their stupidity and ignorance, I just let it go straight through me, like so much fog, and go away and walk in my own sunshine of understanding and empathy I receive from this forum. The people here make my symptoms real. Even MS neurologists dont "get MS." Dont bother to explain. As one wise therapist told me, "don't let their wind get in your sails." So, I don't. I like the wind I feel on this forum; it keeps me sailing in peace and acceptance (which helps MS not progress, by the way). Loving this forum!
You are so right...no one gets it, except someone who HAS it...sad, but true. I had a close friend this week tell me that I needed to go see my Dr. and find out why I was so tired all the time!!!!! Yeah, I know.
bischaar Your anger is both understandable and unfortunate. The trustee spoke without thinking and certainly without understanding. This means he is either willfully cruel or impossibly stupid. If I recall correctly, you have a trustee because you need assistance with the business affairs necessary to maintain independence (bills, receipts, taxes, etc.) Since your cognitive fog complicates your life in the way you've described, you are well aware of why you cannot resume your previous skilled career. The trustee obviously was not thinking.
Of course you will have to let the anger go: it is unproductive, creates stress hormones, and harms your health (to say nothing of spoiling many a beautiful day). Here in your posts, your writing is organized, thoughtful, and easy to understand: when you are calm enough to write about this situation, write to the person appointed as trustee, copy to his supervisor(s), and your family. Explain how MS affects you, the triggers for your righteous anger, the frustration you feel at your position. No one of us wants to be viewed as helpless, incompetent, or unable to cope with the responsibilities of life. Think of this letter as your mission to educate, to help them see you are you are. Yes, you suffer from a neurological condition that impacts you in myriad ways, BUT, more importantly, you are the person you have always been: your essential self (the way you see the world, your values) is unchanged and worthy of respect. You don't write in anger, or as a plea for kindness, but in explication with a desire to inform and improve the relationship between trustee and client. For this relationship to work as intended, there must be clear communication and trust for both parties. If you are seething with resentment, and if he cannot hear and see you, respond to you in an appropriate and thoughtful manner, this will continue to add to the burdens you already carry and is doomed to failure.
My heart goes out to you. I left a consulting position two years ago because I recognized the cognitive fog I experience at times, found myself searching for the right words to convey my thoughts, and knew that I was no longer able to commit intellectually and physically as I was accustomed to. The lack of meaningful work creates a void in my intellectual life which I struggle to fill in other ways. I suppose this comes to everyone with advanced age, but age and MS make the negotiations even more difficult. The trick seems to be in learning how to manage life as it currently presents itself, remain upright and courageous, and go forward. I know you have the strength and courage to go on. Linda
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One week later
How to Forget Stress and MS!
