how to stop?

[Xvettech]

how to be able to give up control of everything? I just have to let it go. Problem is I let it go for a minute then I do it myself :/. Type A personality + MS = major dilemmas!

[falalalala]

I'll be following this one closely.

[DM0329]

Yep; I can relate to your post!

I'm a Type A personality too, who was dx with MS at age 25, in 1994. I was told that young women tend to do very well with MS and to go on and life my life.

Betaseron was dx via a lottery worldwide. Three years later, I go back to my dx neurologist and my follow up MRI (1994-97) shows SUBSTANTIAL SILENT PROGRESSION. UGH.

Additionally, he told me I was "lucky" THREE times. And, that scared the s*** out of me. He said start Avonex as soon as possible. What? Weekly intramuscular injections? I'm a huge needle phoebe too.

But, you will be surprised how much stronger you are than you think when having to fight this MonSter, for the rest of your life, yeah. MS: It's like a tattoo it's always with you!

That dx at age 25 was my wake up call; I wrapped up both my BS and my MEd, while working full time while studying part time at night. It was more of the "don't ask don't tell" situation. I knew I had only so long to "continue to look so good" and work full time.

So, the fear was a great motivator in a way. Unfortunately, my MRI's show tons of lesions and black holes, quite a progressive course, yet I started Avonex at age 29 and continued it until April 2022. I had a few mild flares, optic neuritis my second semester of grad school (Jan. 2004) and left-side numbness when my father had a stroke (July 2007).

Unforunately, after working more than twenty five years after my MS dx, I had to retire at age 45 due to the MS fatigue and cognitive dysfunction.

In 2022, I started menopause and wanted to switch txs. My MRI's had been stable for years and the weekly pokes were enough. I decided to switch to Aubagio. I remember my old neuro talking to me about it in 2012, the year I retired, but I was fine with Avonex.

But, I was tired of the weekly intramuscular injections and although Aubagio AND Menopause both cause hair loss, at this point, my hair is so overrated. LOL A baseball cap or hat is fine with me; paradigm shift. My priorities are different today.

Breathe. Knowledge is power. Pick your DMT (and switch, if you have to until you get it right!). Blessings. 🙏🙂🤞😇👍

[Xvettech in reply to DM0329]

the whole needle phobe thing made me laugh because I don’t like needles either! I’m still getting use to them. I’m on kesimpta and yesterday I had my shot. I covered my eyes and stabbed myself. Nervewraxking but I did itt!🙂

Thankyou for mentioning the menopause. Mine started at 45 also. I’ll be glad to be done with that! So that’s one good thing about MS 😂

I go to secialist next week - finally! I’ve been waiting 1 year for this appt! (Ok technically it’ll be 11 mths, but close enough). I have reg neurologist in May. If I have MRI-which I prob will-I so hope there are no more lesions!

Caps are good. Another idea is wraps kinda like turbans but not as tall. My mom had cancer so she lost a lot of hair :/

Thankyou and blessings to you also

[Tazmanian in reply to Xvettech]

Glad you didn't miss with your eyes closed

[Xvettech in reply to Tazmanian]

I lined it up several times before I stabbed. I’m happy I didn’t miss too!

[DM0329]

You got this girl! 😘

[Xvettech in reply to DM0329]

thanks, you do too!

[palomino27]

Yes, it's hard to let go,It's a process, do not expect to do it all at once. For now, turn one minute into two minutes. Then into three...

Reflect on your progress over time. You will likely be surprised.

[Xvettech in reply to palomino27]

I’ll try harder! Thank you!

[hairbrain4]

It's hard to let go but with practice ,& patience you will wake up one day & realize you finally did let go. Letting go doesn't mean giving up. It means change. We resist change even though we don't like the way things are. Changing your attitude or outlook in your life helps. What are some of the things you would like to do in your life. I wanted to have time to work in my garden & do some quilting. I get to do both now & it's awesome. It's almost like getting a whole new wardrobe. You look different but inside you are still you. So in simple terms lok at as a blessing rather than a curse & you will be amazed at how a who!e new world will open up for you. Blessings🤗

[Xvettech in reply to hairbrain4]

I try. I don’t have patience :(. It’s my nemesis. Now so is MS! It’s hard to navigate all these things changing! My pt was like bow you have to learn to walk. I told her I already learned! But now all is different :/

[Goldilockssearching]

it’s a daily struggle.

[Xvettech in reply to Goldilockssearching]

so true! I wish the people would understand but only yous do! So thank you!

[mrsmike9]

I once asked my internest how to stop being a Type A personality. He said that I couldn't change it but when I had a heart attack I would be more motivated to get better!

[Mollyabigail]

Bless your heart. Not Type A here, but driven to keep my house clean and in order like my mom always did. My legs say, "Sister, we are NOT vacuuming today. And probably not tomorrow either. Deal with it." It is hard to let the housework go... Let us know how the specialist appointment goes.

[Xvettech in reply to Mollyabigail]

thank you!

It is hard to let anything go. Lol! I sit on the walker and vacuum 😂

[agate]

You've asked one of THE big questions, IMO. Realizing that nothing is really under our control is very hard. Everything we think we can still do, everything we think we can depend on, can be swept away in an instant. Hard to live with that!

I like what hairbrain4 said, about thinking of things you've always wanted to do but never had time to do. Now you may have some time to work out ways of doing them even if you have to make some adjustments in the way you do them.

I'm a case in point. I probably would have just sat around reading if I'd been able to do what I wanted to do when I didn't have MS (ages birth to about mid-30s). Instead I was working at jobs, going to school, having kids, running a household. But I did manage to get a Ph.D. in there--and why? So I could get an academic job that would pay me to sit around reading.

That didn't happen. MS got in the way seriously shortly after I started looking for that dream job. But once I realized that Social Security disability was there for me (and so I was free of the need to hold down a job), I also realized that I could at last sit around just reading.

I've read many books over the last 40 years with MS. They've been listened to as recorded books but they were there for me.

[Xvettech in reply to agate]

it is very hard! I am having a hard time accepting things. I’m glad you can enjoy your books!

[agate]

Yes, I still enjoy them. I've seen the type of recorded book change from a cassette tape, sometimes even a disk, to a cartridge but the sound quality and narration are good and the books aren't changed in any way compared to the print versions.

[NorasMom]

Xvettech, I hope you don’t mind me saying this, but I think you’re dealing with too much right now. You have at least 2 major issues going on in your life, neither of which you have any control over, and I’m sure they both involve a whole lot of minor ones, too. You are obviously a strong person, but you’ll only stay that way if you have solid support.

Twenty years ago, I was you. My life was going full speed ahead, and then I hit some damaging roadblocks. Instead of taking a step back and working slowly and methodically to clear them up, I charged right into the fray headfirst. All that did was give me a concussion.

The mind can only hold so many thoughts at once. It took time, but I learned to compartmentalize the problems, basically putting them into a giant dresser in my head. Then I’d only take them out, one or two at a time, when I felt able to cope with them. It wasn’t easy, and the next few years were incredibly hard, but I realized that if I didn’t do this for myself then they’d wind up locking me in a psych ward.

To echo Royce’s daily pep talks, you need to find a way to slow down. A way to slow down the thoughts spinning around in your head. Find someone or some thing that can help you distance yourself from the stress and emotional pain. Whether that’s a daily bubble bath, a walk in the woods, or a trained counselor. Maybe a close friend or relative. A new activity. Whether you see it or not, you are fragile right now, and it’s important that you make the time to take care of yourself first. If you do that, then the rest of it will eventually fall into place.

[Xvettech]

thank you! You guys are my support! I am going full speed ahead. I do need to slow down. I really don’t know how to and that’s probably why I fall a lot 🥴. Thank you so much for your words! I broke down a little today but I have to stay strong and keep going. 💪

as for compartmentalism I have a “red door” in my head. We don’t go there😂. It’s like the red door Damon had in vampire diaries, if you watched that 🙂