“I am who I am and that’s all I got.” Beverly Lober
This was the last line of a blog I just read. This New Year I haven’t made any resolutions, but after reading that line I suddenly wanted to lean toward greater acceptance of what is. Yes, I’ve been talking about that for just about the entire time I’ve had this blog.
Believe it or not, talking about it has helped. But in the face of new symptoms or just spiraling health in general, I question how closely I’m heeding my own words. In essence, I’m talking the talk but not walking the walk. Do you remember that saying?
Lately my endurance has dwindled to nothing. The functionality of my fine motor skills in both hands is decreasing. This makes simple things like flipping on a light switch challenging. I believe something is happening with my speech. People are always asking me to repeat myself. Lastly, I can’t walk. I know somewhere out there is someone worse off, so I apologize if I offend you or come across poorly.
I find myself again entering a new normal. That transition part is the hardest every time. You have to redefine who you are all over again. That or either get to a point where you don’t define yourself by what you can or cannot do.
That’s it! I think I’ve stumbled upon something here.
Though I write a lot about Buddha, I pray to my heavenly Father. I have purpose just the way I am.
We all do.
I recently heard of a 50 yr study on one’s self -perception of change. People tend to “think” they do not change as much as they do over 10 year periods. Ten years is a long time in MS years. I am in warp-speed change. What’s normal to me is change. Ironically, I studied “social change theory” as part of preparing for a successful career in outreach, social marketing and advocacy. Also ironic, the worst of my personal MS has impacted my ability to use words and language. My interpersonal skills have faltered because my critical thinking skills are down. I do those brain training exercises. In the past 4 years I am sunk to lower than 25% of average. That’s one of the reasons I know this disease is progressing faster than I thought. Sometimes change is not good. However I try to practice what I once preached, you must recognize that change is always happening before something can be done. I enjoy your blog very much. Have you tried Acthar? That is my next line of defense.
Della, Change. They say its the nature of MS but really it’s the nature of life. No I haven’t heard of Acthar.
Thanks for reading.
Nicole, glad to have stumbled on your blog. I have been telling people for the past year that I am adjusting to my new normal after I waas rearended and it sent my MS haywire. I have a lot of trouble with fine motor skills especially writing, typing, buttoning buttons etc. It is always so helpful to find someone eho understands what MS is like. Thank you for sharing your new normal. Many blessings to you!
Isn’t it a shame that after living a life where you are always being pushed to achieve more and also set ever higher goals now we have to adjust the point of achievement ever lower. I totally understand what you’re saying, I also have PPMS which has been advancing very slowly for quite a few years. This past few months I have noticed things getting worse. My cognitive functioning is going fast, I can barely type this and keep my words straight, I have no short term memory, you know it’s bad when you try to get into the wrong car when your leaving 7-11. I was once a nuclear engineer, it is a quite different normal for me than it used to be.
Great post you always seem to put into words much better than I can – thoughts. The one thing I hope I never lose – my thoughts. Changes – by the time I get close to acknowledging or accepting them a new on appears.
I am working on the not define myself by what can or can not be done but still stubbornly hold onto the find a way to do it method – even if it takes all week or only ends up done in my head.
Kmilyun, it’s so nice to see your name! Acceptance is a naughty little hairy beast.
thank you Nicole. I am Dennis and that’s the gift of life.
Dennis, Thanks for reading and sharing your gift of life!
I’m sorry to hear this Nicole. Everyday it seems “we” experience something new. This week for me it was chest pains (heavy). I worked in the healthcare field so I know the symptoms of a heart attack. I called my doctor and he has put me on NTG and ordered a nuclear stress test. It scared the heck out of me. It makes me feel “old” that I have to take nitroglycerin in my purse like my grandmother. I hope it’s not the Tysabri that’s causing this. Chest pains could be a side effect, but the cardiologist I was sent to did not know anything about Tysabri to make a judgement. Anyhow, the bottom of my feet have started hurting constantly. I know this is pale in relation to your problems, but it helps to talk to others who understand what we go through. I pray that you and all of us feel better. Elaine
Elaine, Chest pain is scary and NTG are two whoppers that would scare any of us. I don’t know about it being a side effect of Tysabri, but I hope your stress test will give you some answers. Please don’t compare problems. I’m not sure what the winner gets! I hope you feel better too!
Nicole, I am so sorry you are declining. It has to be a scary abyss. My thoughts are with you. You help so many of us and I thank you for letting us into your head. You express what so many of us feel. I am glad you are still you. My cognitive changes make me wonder if I am still me.
Lisa, It’s a slow decline. Slow enough so I can steady myself so to speak.
Acceptance is something I’ve not come close to achieving. A large part of me looks at my MS and tries to pretend it’s just another obstacle to be ignored and denied until I can no longer do so. For what it’s worth, this attitude drives my wife nuts! I understand why, it’s just if I stop when I first feel signs of my body stressing, I may as well stay in bed.
Why define yourself by what you can and can not do? My first thought was “Well then how are we to define ourself?” The best I can come up with is “Why not define yourself by your dreams, what you attempt, and by whom you inspire?”
Remember, so much can be and is done by those who never stopped to consider why they couldn’t.
Well lived, I think that’s an excellent way to define ourselves! Thanks for sharing that one with us. As for acceptance I wish I had the magic pill for that one. The best thing I got is try not to drive your wife crazy!
U continue to inspire and encourage me.! Thanks so much
Gail, That makes me smile. Thank YOU for that!
I am always inspired and encouraged by your writings. Thank u so much.
Ha! My “normal” changes so much that I’m constantly redefining it! Yep, the walking is just about shot, hands can’t do too much, fatigue rules the day, and I now have bad days and worse ones! So, I totally get it.
Peace,
Muff
Muff, Yes, you sound like you get it!
Dear Nicole,
Thank you for sharing your journey. I must recommend the book by Linda Toble Nopf – You are Not Your Illness. It has been a godsend to me as I navigate through this MS journey, and I HIGHLY recommend it. PLEASE GET THIS BOOK ASAP! It has helped me put my experiences into context and continues to nudge me in a helpful way when I am heading in a non-productive direction, and helps me to get the value out of each opportunity with which I am presented — even the more challenging ones (of which there are many!)
All the best to you in 2013!
Linda, I think I’m going to get this one because you are so passionate about
it!
Talking about it, somehow helps me too….it is hard to find a new normal since normal keeps changing….not easy to think ‘it could be worse’ ….that is hard for me too
Kim, I guess its hard for most of us.
Constant change and, unfortunately, decline are the new normal. I am currently rereading Viktor Frankl’s Man’s Search for Meaning with a preface by Gordon W . Allport. If you have not read already this classic gem by the concentration camp survivor, you might want to try it. The situations are not perfect analogies for each other, but there are great lessons in how to cope with things out of one’s control.
Judy, I think a lot of us are turning to reading. Thanks for the heads up. I’ve heard that the only constant in MS is change.
love the comments the feeling of not being alone
dealing with difficult situations, which at times can be difficult
when living alone Thanyou Nicole x
Mary, Thanks for reading. I kinda love the comments too!
Nicole, I think that is why acceptance for MSers is so difficult…..constant change….can’t settle into or define a “new normal”. Doable, just difficult and can take a while.
Purpose? It is embedded in the “normal” whatever that is. Kim C
Kim, Great perspective. Yes it’s the constant change that keeps me spinning.
I totally get it and your blog has been very helpful with me dealing with my MS.
I wish my brain and my body would agree what i still can do and what i cant do.
Liza, I’m happy I’ve helped you deal with your MS. I’m honestly just dealing with my own in front of you guys! Yes my brain and body are at odds too!
Hey Nicole,
Great article and an even greater conclusion! You do have purpose just the way you are and you’ve blessed many of us MS’ers deal with our disease on a daily basis. I’m thankful that no matter what my limitations may become, I’ll always still be me. I belive this is true for you as well so be encouraged as the “light bulb moments” continue to be revealed to you.
Tim
Tim,
You are right, I did have a light bulb moment there! Thanks for catching it and thanks for reading.