I often say that losing control is one of the worse things about MS. I’m not just talking about bladder control, although that is a demoralizing demon all by itself. I am talking about control of my daily routines and affairs. I’m very fortunate to have a helpful husband to be going through this with and I have an excellent collaborative medical team.
But the raw control I have over my life is diminuative at best. My husband gets the brunt of my temper tantrums. He sees me at my most vulnerable times. He usually talks me into doing what’s best for all involved. When sometimes I just want to do what I want to do! Since I am a permanent passenger sometimes it’s as mundane as wanting to take a different route. Or maybe go and visit my parents or a girlfriend.
But I’ve got to give it to him, he never asks me to wait in the car while he “runs” in a store real quick. Often friends and family do that. But I understand it and I don’t fault them. After all, nothing involving me is “real quick”. Hubby simply said he doesn’t ask me to wait in the car, because he enjoys my company. That was sweet. Plus, I guess since he is a young man, hauling around my scooter or wheelchair isn’t really a deal breaker. I don’t mention to folks that I do mind waiting in the car. I’m usually just so grateful for the outing. But boy do I wish I had a bit more control of the situation. Wow, I hope now I haven’t already offended someone.
That’s why it was interesting when I read somewhere that giving up control can be a bit freeing.
I never considered that. Letting go is a new concept. I’ve been beating myself up over the control I thought I needed.
Well, I just may have to let go of that control wish, because it doesn’t look like it’s gonna happen anytime soon.
Now, if it’s actually freeing….stay tuned, I’ll let you know.
Blunt is the Way to Go to get your message heard–bring it, Nicole –!! I have been housebound so long, 4 years, that just going out for a ride in the car is The THING TO DO–!! I love waiting in the car and watching people go in and out of the stores. Sometimes I say a prayer for them and sometimes and talk to them and tell them to count their blessings.
Deb, I love your perspective. Sounds like I just may take it on.
I think part of this beast is accepting a loss of control. It has forced me to go inward. I guess that is why meditation and yoga help alot with all of this. It’s funny though I have been super organizing and labeling everything in my home, getting prepared in my mind for the next “attack”. It also gives me a sense of control, but I don’t think we are ever able to really control anything. It’s cool that your husband “digs” you and wants to get you out….that is really way cool. He is by your side and concerned. That is really cool too.
Thanks for your voice.
Olivia
Nicole, don’t underestimate the love your friends have for you! Sometimes they want to hear you VENT! Other times you should have a temper tantrum while in their company. They’ll get over it! And last, as long as you CAN get out the car to shop, they WILL understand if you want to come so you should just say ” GET ME OUT THIS DAMN CAR! I’M SURE ALL THEY WILL DO IS TO SMILE and get YOU OUT THE DAMN CAR QUICKLY !!! They may feel your to fragile to do all that moving so YOU need to show them your not so fragile at THAT TIME!
With all my love Auntie Gail!!
Aunt you are so right.
Being a former control freak, MS has made me change and adapt. I don’t drive due to cognitive problems and that single act completely changed my life. I live in L.A. and a car is a necessity. I have to rely on others and I hate it. My style has been cramped. I can’t do anything about it so I do spend too much time alone. I miss my old way of life.
Lisa, I miss mine too.
Control? How loud and hard can I laugh without scaring the neighbors? The definition of MS is giving up control. You don’t have to be a previous control freak to get bent out of shape about it. This is abnormal loss! And I know there are coping tools, which you and I both use. And I know we do pretty well considering the mess handed us. But sometimes it makes sense to call things as they are. And what they are, post-MS, excuse me, is sucko, at least physically. Okay, I got that off my chest. Thanks for the opportunity and sorry if my shouts blasted you across the room.
Judy, You didn’t blast me anywhere! I never thought about the sheer nature of MS means giving up control. I guess you are right.
Hi Nicole,
i am new to your website and to my MS diagnosis and i am overjoyed by the information i am receiving. I am wondering if anyone is suffering from extreme and constant pain.
LaTonya, I’m glad you’ve found us! I was at a convention. I have to accept each response before it appears, that’s why there was a lag there. But yes I have heard of people who experience pain. I don’t have it but maybe some body will read this and chime in. I publish new posts on Tuesdays.
Latonya..
I have very little pain, mostly my lower back fr sitting all day but it’s not constant & nor extreme. Mention it to your neuro. is age a factor, weight, lack of movement?
Kim. thanks for the feedback.
Well Nicole, you’ve hit another nerve. I know exactly what you’re saying. And I do not have a patient husband or a good medical team that I feel I can trust. You are VERY lucky in those regards.
At least in my electric wheelchair I’ve been able to regain a bit of control. That is, until 2 weeks ago when I had a bad fall while transferring from the pool to the wheelchair – something I’ve done every morning for years and years without incident. My foot swelled up so it was unrecognizable as a foot, and I had pain like you would not believe. It was 8 days before the husband “found time” to take me for an X-ray, and then he only dropped me on the street outside the hospital and drove off. Of course the foot is not broken and it was all a big waste of time any way. My GP has referred me to a surgeon for the torn ligament, but I don’t know if surgery would be worth it, since I haven’t been able to walk for 5 years any way.
Doctors have not prescribed pain meds or a brace or anything.Our bathroom is up 2 steps, so no matter how much pain I am in, I must hobble up those steps every couple of hours. Either that, or wet my pants.
My GP is right next to the grocery store. The other day my husband promised me a trip to the grocery store after I went to the doctor to find out the results of my X-rays. I was unduly excited about the grocery store and spent hours making meal plans and getting my e-coupons ready. I hadn’t been to the store in over a month and my kids had been clamoring for all their favorite foods that we were out of. So I came out of the doctor’s office all excited to roll next door to the grocery store. My husband put my wheelchair in the car and told me he’s NOT going to let me go shopping, he needed to get to work. I understand that he needs to work, since I cannot. We’d be homeless if it weren’t for him. But that trip to the store, in spite of my foot being swollen up like a balloon, meant EVERYTHING to me. I cried and cried and cried, at the same time feeling stupid for making such a big deal.
It wasn’t about needing groceries, because my husband always picks up what we need at Costco. We aren’t going hungry. It was about CONTROL. I wanted to go up and down the aisles and pick whatever looked good. I wanted to decide what I was going to make for dinner according to some new recipes I’d seen online. And I did not want someone telling me I couldn’t go into the store, when I was a few feet from the door.
I know from my Buddhist studies how non-attachment brings happiness. I guess I have a few things I need to work on.
Laurie, Sounds like you know exactly what I’m talking about. I need to meet the person that would not have gotten upset with that one.
Do you chant?
I’ve drawn the line at chanting, at least the Buddhist kind. I’m Jewish and I stick to Hebrew chanting.
LAURIE…
i am so sorry to hear of your difficulties. Our children are grown & married (I’m soon to be 59, dx 12 yrs ago) so it’s just my husband & I here. We do have enough groceries probably to live off of for 4-5 months, but we go grocery shopping once a month & I let him know at least 1 week in advance o he can plan. Same w/DR appts & such. I find advance notification works great. I no longer work, drive, cook, clean & my husband has picked up the slack, but I don’t overload him. He works FT & still does all the outside chores. I have outtside help do all the cleaning & laundry and have even considered ne of my old neighbors to do groc shopping, but then I wouldn’t get out at all! I’d be lying if I didn’t say that I DO get jealous of what he can & I can’t do, but I can’t chg it! We just finf=d a way to overcome it & move on. Hang in there….KIM
Kim, I’m 54 and my two youngest are 11 and 16. It’s so hard to keep up with them, their needs, and their demands. They’re rarely helpful. I’m sure it’s no fun for them having a mom who can’t do anything with them. My husband doesn’t believe in advance planning. When I believe we’ve planned something, it only leads to great disappointment. I get way to excited over something as simple as a trip to the grocery store, and when he backs out of the plan I’m devastated. I do have help with housework and laundry, but hubby has to do everything else – plus make a living. I know it’s hard on him, but he’s very bitter about it all. I obviously made his life way too easy when I was still able.
Nicole,
MS has also taught me alot about the issue of control in my own life. It has helped me learn that the only thing I have any real control over is my attitude about this journey we are all taking. For me, controlling my ego has been the most challenging part of this. Remembering that this journey is – at its core – the way that I am destined to learn about myself and my reason for being here can be helpful (or irritating, depending on my attitude!)
Please take care, keep writing, and keep appreciating that good man you are blessed to have in your life!
Linda, I feel like you just sat me down and gave me “a good talkn to.”
And yes I try very hard to show him how much I appreciate him.
Please, please don’t give up Heather!! I know living with MS is awfull depressing and the whole intimacy thing can be frustrating as well.
A while back I went to a MS meet and the sex issue was raised. Did you ever hear of the EROS device? It is designed for women that can’t get aroused. Some insurances may even help pay for it!
I totally will ask my gyno about it next time. Maybe you want to do the same?
I hope she gets your comment. Thanks for leaving it.
Nicole- thank you for this post. I was dx’d in 1985, at age 25 w/MS. I lived in DENIAL for the next 25 yrs… and then at the beginning of summer 2010- I finally realized that I was barely functioning. Went to 2nd neurologist (a rockstar@ UTSouthwestern) & dx’d w/SPMS, my brain was “on fire” w/active disease… After oral steroids & then oral IV steroids (mixed at a specialty pharm)… It was finally the 8 rounds of APHERESIS that put out the forest fire!
My doc wanted me to start the just approved Gilenya, which was formulated to treat RRMS- but she & Novartis thought it could be helpful/experimental(?) in stopping the progression. That was Nov. 2010… and latest MRI April 2010 showed no new or active dz.
However, the report did read: “innumerable foci” present basically everywhere on the brain. With all this said, my “NEW NORMAL” has been an ongoing education about this dz & finally understanding that all the “brain farts” and ” senior moments” I’ve laughed through, ACTUALLY make sense now! I never knew (probably because I DID NOT even acknowledge it) that MS could be so cognitively devastating.
Yes, I’ve got plenty of irritating physical limitations. I’m still walking & getting around – but for very limited amounts of time. Lots of other stuff also, but I would feel arrogant to even complain about any physical problems – when there are SO MANY fellow MS’ers (like you) who are seriously disabled.
What I do mourn the loss of is that I used to be somewhat intellectual, creative, & motivated! I actually cared about how my house looked & enjoyed changing paint colors, rearranging furniture & decorating w/seasonal decor. I was well-read & could actually REMEMBER what I’d read! Now I’ll pick up a book to read – and one quarter through it – I’ll see highlighting & notes I’ve made! I constantly forget the answer to a question that I just asked & am forever looking for my keys, glasses, purse, cup of coffee I just made, etc… Thank God it is not like Alzheimer’s! Supposedly all of my extreme genius is still there… but the signals just don’t fire like they should. The scariest time(s) are suddenly losing situational awareness, i.e., Why am I here? Where was I going (while driving!)? What was the purpose for my attendance at this meeting?
So LOSING CONTROL for me, is actually acceptance and understanding A LITTLE BETTER what used to FRUSTRATE the heck out of me, and why. And like you, I am blessed with the most incredibly helpful & loving husband ( of 31 yrs!) who still loves me despite myself. :).
Stacy, Thanks for leaving such an insighthul
comment.We may be at different points on this MS journey but I still hear and understand ya.
CONTROL… That as MS’S is something we definitely lack. But is it really CONTROL we lack? When I hear the word CONTOL I automatically think of a CONTROLLING PERSON; not a word that describes my inability to do something I want to do. I feel that UNABLE may best describe what we can’t do. I am unable to drive, walk, shower myself, etc. I can still CONTROL my feelings, sometimes even physically showing them! I know how you feel abt “waiting” in the car. I hate it also. I can’t do a thing but WAIT! Something else I can’t stand is when my husband gets me on the sofa to lie down & then goes outside (always to do something quick!) & leaves me. I can’t do anything on the sofa, not even move, and besides I’m in the house alone. At least on my scooter I can go within the house on my own. I am also very blessed (as you are also) to have a wonderful & patient husband who also bears the brunt of a foul mood of mine occasionally. I always look forward to your new posts & comments made by others. Wouldn’t be wonderful if we all lived close by & could get together and vent? Have a great day Nicole.
Hi Nicole! After just writing my own thoughts about losing control – I read your post.
Wow. I am SO VERY SORRY you’re so terribly disabled… but, I AM SO IMPRESSED & INSPIRED by your great attitude & sense of humor!!!
Thank you for blessing my day. And I’d love to host a VENT & BITCH party at my home… but then I’d have to BITCH about how flipping HOT IT IS here in Dallas… and then I’d forget how I even got on that subject.. :). Oh brother.
Sorry… My last “reply” was “replying” to KIM! Sorry Nicole that I addressed it to you!!! But hey, that’s just the way I roll these days.
Stacy, I’m not even sure I know what you are apologizing for! So, it’s all okay.
Kim, I know. At this point you guys are my friends. I should embrace my scooter more. I’m happy you get the waiting thing, but just to let you know, I had to prepare
a few folks for this post. I didn’t want bite the hands that feed me so to speak!
Hi Nicole, I wrote to you a while ago. Still like following your comments about your life and how you are learning to cope living with MS.
I don’t have MS but did work with clients years ago now. I can relate only by my experiences with the people I helped live as independently as possible in the MS Society owned units.
I am full of admiration for you and your honest writing of how you feel and the struggles you have in every day life. Love your lovely caring spirit for others in the same struggle. Please stay strong and healthy.
I will pray that there is a cure found soon, would be great if they could also reverse the damage done but if not, at the very least a cure and a stop in the progression of this horrible thing that robs people of so much.
Take care and keep writing. You are an inspiration.
I hope you don’t mind me writing.
Nina, Of course I don’t mine. I think it’s great that I’m reaching caregivers as well. You may one of those who ran in the store “real quick”
No Nicole, you are wrong.
I would be one of those who would ‘drag’ you inside the store with me. I hate shopping for others cos I always get the wrong thing.
No, honestly, perhaps because I understand the frustration of not being involved, again only via ex clients, I would take the time to take you in with me.
It would take a much longer time for the excercise but I am also trained to encourage independence as much as possible. I am no saint, but I hope I have empathy.
I go to the shops, I NEVER ONLY come out with what I had intended to buy, I always come out with extra and take it that you would like to have that choice also.
Cheers.
Nina, I figured that. I was just kidding!
Control is an illusion. We all think we have it. We all plan for ways to get what we think we want, but how often do things work according to plan? Exactly according to plan? I tend to think the moment our plans involve another living creature, the odds of things working as we thought they would go way down.
I think of the old joke: “A man marries a woman thinking she will never change. A woman marries a man thinking she can change him. Both are wrong.” It’s funny because it gets right to the heart of ability to match fate to plans. Planning is necessary because without it, we doom ourselves to never be prepared to achieve or good outcomes leaving only lesser outcomes possible. Still, on the biggest things, success seems to rarely look like it did in my imagination
Well Lived, I like that last sentence “Success never seems to look like it did in my imagination.” Boy is that true. I never would have dreamed of have of the things that I find myself successful in now.
Hi Nicole.
I love reading your blogs and they always touch my heart. I am so glad you have great support system.
I sometimes wish I could do more so my children(young adults and teenagers) didn’t have to do so much for me. But I am grateful to have them around.
Thanks for helping me to reflect.
Arletha, You. are so welcome and it helps me too!
I love your posts. Thank you. You inspire and I hope prepare me for the days ahead, which are an unknown entity. I like the small doses versus sitting down and reading an entire book of this type of wisdom.
Lollie, I’m humbled that you can get a little
comfort here. I glad you see that this can be different for everbody
who has it. Plus our truth doesn’t necessarily have to be yours.
I find it hard.to even be sexually to my husband..excuse me if I’m being too blunt too. I give up
Heather, No,you were not being too blunt, I think Yvonne left you a tip in her comment, I hope that helps. You may just be saying what others are thinking! Sorry, it took me so long to reply.