3 years in, still not accepting - My MSAA Community

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3 years in, still not accepting

Mcoryea
Mcoryea

so I was diagnosed Dec 2015. To me, my mobility and symptoms have gotten worse but I've only had one MRI show worsening, with larger brain stem lesions. I've tried Tecfidera, and my body hated it. Now been on Aubagio about 1 1/2 years. Considering trying Ocrevus but scared I'll make the wrong decision and have more damage. I turn 40 in December and so tired of feeling 100 and not being able to keep up with my family/kids. I work full time, have 2 kids still in elementary so I know I'm blessed that I'm not even worse. I broke my foot Memorial weekend and just now healed and out of cast/boot so this summer was even more of a struggle. How did you get to a point where every time you were reminded you weren't going to get better... you didn't have a pity party. My coworker just turned 40 as well and the difference is night and day and a constant reminder of this horrible disease that has latched on.

33 Replies

I don’t think you ever do accept it. I was dx in 2010 with PPMS and it’s hard when everyone around you is doing things you know you used to be able to do. Seeing your independence go slowly is hard, but you have to make the most of it. When you look at the devastation around us, fires, hurricanes and floods, I am just thankful I am where I am. Having 2 children takes a lot of energy, be honest with them about your illness and they will grow up helping you and finding things that you can still do together. Don’t despair, do what you can and have fun, but don’t spread yourself too thin. Blessings Jimeka 🦋 🌈

Mcoryea
Mcoryea in reply to jimeka

Thank you

I am so sorry that you are having a hard time BUT that's kind of the way it goes. I was 41 when I was Dx, I had several things happen over the first couple of years mostly in eyes & 1 case of going numb from my underarms down to the soles of my feet. Then my body settled down for a while. I had a mother-in-law I would have liked to strangled about that time BUT life goes on so as my good friend says time to put your big girl panties on & get on with it. sweetie have a pity party & a good cry, I do every few months it does help to clear the air. Then come here ask all the questions you want HERES A BIG HUG!! to help to get you back on track. Mary

Mcoryea
Mcoryea in reply to kycmary

Thank you

kycmary
kycmary in reply to Mcoryea

How R U doing Mcoryea I am praying that you can find a way to live with your 'NEW' life. It will change now & again I usually just find a different way to do something.

Mcoryea
Mcoryea in reply to kycmary

I am a little better thanks to everyone here and the support! Working on a plan to make a few changes and learn how to adapt better to my situation. I appreciate you checking on me! Hugs!

kycmary
kycmary in reply to Mcoryea

I'm so glad your feeling better learning how to cope is harder for some than for others I will continue to pray for you. How old are your children? I was helping to raise grandkids & they love to help. So what if they don't fold the clothes like you take a step back give them a hug & thank them they are helping. My oldest grand son helped fold his papaws underwear he rolled them up we put them in his drawer. They folded the undies & washcloths, hand towels small things. I let them dust BUT you hang on to the can of spray.

I certainly attend occasional pity parties 😢 but I try not to stay at those parties very long. I have found that negative thinking and negative self talk results in worse outcomes. It is tough staying positive when MS constantly reminds you of what you can’t do.

Mcoryea you have an awful lot going on b/w work and kids and injuries. Be sure to make time for yourself, be kind to yourself.🌈

Mcoryea
Mcoryea in reply to erash

Thank you

MS is a roller coaster, and I think the acceptance part is like that, too. We can't exactly celebrate MS, but for many of us, we have appreciated what we have learned because of it. We try to remind ourselves of what we CAN do. Comparison is killer in every situation. Someone will always seem to have it better than we do, but we have to keep balance by remembering that there are many who have it much worse. We learn to adapt, rather than collapse in a heap. (Well, we do collapse in heaps on occasion, but we try to pick ourselves back up again!)

You certainly have a lot of demands on you, so I hope you have lots of support. Coming here to vent helps me a lot since everyone here understands so well. I hope you can take stock of the abilities you still have and savor them, and then come here to get support when you need it.

Mcoryea
Mcoryea in reply to greaterexp

Thank you! I do try to remind myself of my blessings and what I havent lost. Losing independence has always been one of my biggest fears and learning to accept let alone ask for help has been a hard journey. But trying to stay positive

Jesmcd2
Jesmcd2CommunityAmbassador

How in the world did you break your foot?🤔 Mcoryea I hope it's doing better now!

I'm glad your here. This roller coaster is a tough one! And so different for everyone. And everyone handles it differently.

I tend to look at what I CAN do, on any given day. Not every day is good, but not everyday is bad either. It just is.☺️ And it's always confusing, and challenging. But life in itself is confusing and challenging.

So believe in yourself that today, your going to be ok! And let tomorrow, be tomorrow, and that's going to be ok to!

🤗💕

J🎃

PS we have books to help little ones understand your MS, perfect for elm. School age.☺️ Let me know if your interested.

Mcoryea
Mcoryea in reply to Jesmcd2

Jesmcd2, I was coming out our camper and lost my balance and missed the step and cane crashing down. I am trying to keep positive and be glad that I am not worse. Yesterday I went to Neuro and she had reminded me that this is as good as it gets, I wont get any better. Hard to hear

I was dx in march 2014 and told i cudnt work anymore. Vertigo and cog difficulties. Its very hard to hear. I was 43 and so not ready to retire.

But it is what is and thankfully i now have a psych nurse that comes to my house and she reminds me of the good things. She doesnt sugar coat my bad things in life but she has taught me how to balance it out.

If u can perhaps a therapist may help u? Coming here helps me a lot. Everyone here listens to u and understands. And they know how to help lift u back up. It may be something small someone says to u, but it will turn ur day right around again. Especially Jesmcd2. She has the best sense of humor out of all of us! 🤗🤗

Thank you! Yes I was told yesterday to consider quitting my job. Not ready for that, but trying to understand and accept.

Can u do part time maybe?

Financially it would be really hard. And id lose my insurance etc. so just a lot to consider.

Ya and u have to be outta work 6 months before filing for ss. Or it used to be. If u try for disability def hire a lawyer! They dont get paid unless u get paid!

Thank you!

My MRI's have been stable for the past 4 years but I've had things slide away. I don't understand why.

I also am on Aubagio. I've had my days of grief but for the most part I've decided to figure out how to soldier on. I REFUSE the "MS doesn't have me" stuff because platitudes don't suit me. When I wake up in the morning I just put one foot in front of the other and consider that my victory. Anything I can get accomplished, I do. And if I don't, I don't.

Yes I dont understand the doctor telling me I am stable but my symptoms get worse. Frustrating but trying to focus on the good.

MRI’s show lesions on white matter on the brain but dont show gray matter. So there cud be more lesions the doctors cant see

Exactly! I've brought that up to my dr. and he just changes the subject!

My neuro is the one that told me about it! He is eccentric but seems to know a LOT!

Your post hit me hard, I can relate. I hope you don't mind this lengthy reply. I'll be 40 soon (too soon!) and was diagnosed just over 6 years ago. It was very difficult for me at first; like you, I really struggled with acceptance. But here's my advice - resolve to making some life changes, big and small. I mean it, write a list if you have to and check them off as you go. We all have healthy friends and family who want to lose weight, hate their jobs, don't read enough, always wanted to start a new hobby, but don't. For whatever reason we continue in our routines and our habits, and accept life as is. I was that person before MS, and at first, I thought MS was the thing that would keep me from chasing dreams or being happy. But I can tell you, honestly, the opposite is true. I changed my perspective, and at some point I started thinking, if I only have ten good years left, then I'm not going to waste them feeling sorry for myself. F*** it, right? What else do we have lose?

There was no big epiphany of acceptance, I just forced myself to make some life changes, to focus more on what I could do, rather than what I couldn't. I changed my diet, not huge, but it made a major difference. I travel more. I started yoga and meditation. I resolved to read as many books as I could, alternating fiction and non-fiction, and I found a new love for music - I began learning the guitar. I've always gone to concerts, but now I'm not embarrassed to dance or sing along. I got married, and scheduled family walks everyday after work, just to connect and avoid TV. I started a new career and moved away from the snowy east coast winters I always hated. Maybe it was just that I was keeping busy, but one day it hit me that I hadn't seen that dark MS cloud in a long time. It still creeps in occasionally, but I was now appreciating the time I had, and wasn't worrying about the time I was losing.

I know it sounds like a cheesy internet meme, but through this little journey I had mapped out for myself, I learned to accept this stupid disease. You'll find peace with it but it won't just come to you, you have to pursue it. I get it, MS sucks, but get up, get out, live and love, and you'll figure it out soon enough. We don't have any time to waste.

Midgey_Midge06
Midgey_Midge06 in reply to IAS12

Awesome post! Makes me want to go sit down and make that list! Great advice

Mcoryea
Mcoryea in reply to IAS12

Thank you so much! I will certainly try this. I had issues with trying to change too many things at once and then get more frustrated. I will try this and maybe get my family involved! I

IAS12
IAS12 in reply to Mcoryea

Absolutely, having family come along with you is a big help. I can't say enough about how much better I felt by cutting a few things out of my diet, but I doubt I could have stuck with it without family support (though I still cheat sometimes). And yes, the big changes are especially frustrating (I still have days of wondering what the hell I'm doing all this for). But I'll tell you, every moment of frustration I feel for thinking I'm too old to start a new career, or for being judged by my siblings for "changing," all of that is much easier to stomach than those days after diagnosis thinking my life was over. That and, remember its about the journey, enjoy the change process and don't worry so much about the result. We're allowed to screw up - we're sick!

Mcoryea
Mcoryea in reply to IAS12

Can I ask what things you have cut from your diet? Ive been interested in making some changes based on studies I have read but I just try to take on too much at a time so it hasnt worked

IAS12
IAS12 in reply to Mcoryea

Yeah it can be overwhelming. I've read them all, and one doctor I see has begged me to cut out all meat, gluten and dairy. Bleh, too much. But for me, the big ones are that I eat no red meat whatsoever (which is tough because I miss a good burger), and other than weekly family pizza night, I don't eat dairy. I cut out all processed and canned foods, and anything fried (which limits takeout options). I cheat sometimes and I'm sure I could do better, but it has really helped.

It's probably less of an MS thing and more of a general quality of life thing, and it's not like cutting out cheeseburgers is the big MS cure we've been looking for. But it makes me feel like I'm taking control of something, rather than MS running the show, if that makes sense.

Start small. Pick one thing. For me, I knew red meat was an issue. Cutting that one thing out immediately gave me more energy everyday. Just find yours, and I think it'll work wonders.

Mcoryea
Mcoryea in reply to IAS12

Thank you so much!

I keep recalling that there are better lives - but worse ones too. Cope with yours the best you can.

Acceptance is not easy. I am an outlier I'm afraid, because my MS Dx was not a big surprise. My grandmother and 2nd cousins were and are living with MS.

we inherit eye and hair color as well as predisposition to diseases like diabetes. This is my rational mind talking. In challenging times I rant and rave, "this SUCKS". In the long run, I consider myself fortunate to have MS during a time there are Disease Modifying Therapies (DMTs) I can use to slow the progression of my MS. My Dx was in 2000. Since that time I've benefited from Avonex, Tysabi, Tecfidera and now Abagio. Because I have only changed DMTs when they were not holding back disease progression (clinical and MRI changes) or I tested positive for the JC Virus. I've been on Aubagio for a couple of years. My recent blood work and MRI indicated Aubagio is doing it's job...slowing the progression. I have no experience with Ocrevus other than a woman I know had her first dose. She felt good about it. Then they had her do a test for the JC Virus and have told her she can't continue with Ocrevus because of the risk of PML. I am probably chatting too much, but I will suggest you consider any side effects, clinical changes, MRI outcome and new DMT risks before changing your DMT. There are some symptoms the DMTs don't seem to change significantly or cure. I send you the best of luck in your decision. Take care :)

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