I've had MS for almost 15 yrs and for 12-13yrs I'd been fine. Then came 2014. I would never believe that I won't get better...saying that would be crazy talk to me. However,due to my difficulty walking lingering, I find myself crying more often because when I wake up, it lt's the same. I've just started Rituximab in April, my MD says it's working...told me we have to give it more time. I feel isolated, and...well! Too many emotions to NOT be confused about what I'm supposed to even do. Just turned 35! I'm an RN, haven't worked in going on 2 yrs. I just can't quite wrap all of this around my mind...
How do I continue to deal with this...
Can anyone relate?
#imploding
Written by
Kj9681
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It's hard that's were support/support groups come in, especially with others dealing with the same things. Being a RN I know you seen a lot worst than MS. Just enjoy life and your family. Good luck
Hya Kj9681 has your GP / Consultants ever checked your vitamin levels, particularly B12? Or are you on B12 injections already. Your body sounds very compromised which of course it is!
B12 can be an amazing support for your whole body and mind but often dismissed by docs or not even talked about.
I had a myriad of symptoms that gradually got worse and worse over probably 30 years. Was checked for all sorts and saw a million consultants - slight over exaggeration there but in the end it was my B12 that had dwindled to hardly anything and it affects your whole body.
I don't often check this site but you sound so 'trapped' and overwhelmed I felt I had to try and help. Hope I'm not telling you anything you don't already know about though.
Keep going, you've got friends and support on this site xx
I was actually prescribed b12. It was hard for me to get because my levels are always normal. You see, my diet gives me dreamy blood work. I'm not even Vit D deficient.
I suppose I do feel a bit trapped. I do get out however, I'm in this house way too much! Walking is something I won't stop doing...my leg, my body! I'm stubborn, and If MS where a person I'd flatten her!!
I have less than a hand full of people I call friends. Just learned about how my family would most likely leave me in a nursing home and NOT visit! That was hard ☹️.
No mom, dad, or granny. All passed. I've no spouse. I'm raising 3 girls.
I ask God to throw me a bone... I'm just waiting, and fighting.
I share some of your feelings, but I've lived a long life and still figuring out how to deal with going into Secondary Progressive which is my recent diagnosis.
I've no suggestions about physically improving (or I'd take my own advice). The most important lesson I've learned in my 71 years is get your depression under control and figure out something to give you enjoyment.
About 40 years ago I battled serious depression. Bad place to be. Had no one, felt awful, raising 2 small kids alone. I didn't know what to do, but a military doctor got me on anti-depressants (tried several different ones) and insisted I join group therapy. Took a few more months and eventually I found some small joys in life. Never before had I envisioned myself in group therapy, but it works. The moral of my story, be more afraid of the sinkhole of depression than the disease we mutually share.
When I feel depression targeting me, I grab Suduko, my Kindle, go to this website and read about others' who are struggling. Nothing as strengthening as living to a BEYONCE song/video. This may sound silly, but we've used lots of cheerful colors in our home. You can't help smiling when you walk into bright, pretty colors. I go to websites that are kind of interesting that pander to my likes. It's the little, tiny joys I've found that add up and give me some strength.
PLEASE, don't give in, seek a doctors' help, join a support group. I have many friends who have MS since we all go to water aerobics (thanks to MS Society). We communicate via email and texts. Usually one of them can help 'drag' us back to a reprieve.
I'll stop rattling on and tell you many, many of us feel for you and will follow you on this site.
I missed your response. Forgive me😊. I'm on the edge however, I just can't envision jumping/ quitting. I chose to fight. I chose to win. With God leading me, I can't lose. I'm simply uncomfortable...I'm feel awkward. I don't know how to do this. That's my issue...
I did look at the MS society page. I was able to find 3 groups near by. I feel like I need to take a class for the newly diagnosed... Things are so different between then, and now. I'm having a hard time "getting a grip"...how terrible.
Thank you for your response. I feel as though when I meet more people, "like me", that I'll be more able to find more comfort.
Hya it's me again. B12 levels can be 'normal' in the doctors eyes but you can still be deficient. It's a basic test they do and your body may not be able to convert the b12 in your body to active b12 which is what you need to have. My level was classed as normal but they lowered the goalposts in the UK sometime in the last few years. In the end I bypassed the GP and NHS for it and it's the best thing I've done. In Europe it's freely prescribed.
Check out the Pernicious Anaemia Society. They also have a site on this here too.
Thank you!! Will do! Crazy thing is, I have some in vials w/ syringes... 🤔 Just didn't think I needed it. I'm going to look in to this up and down!! Thanks a bunch!! Blessings
How have you been surviving for two years? Are you on disability? I would recommend applying for it - the sooner the better.
Do you have someone that can help you with the stress and confusion - a friend, partner or family member? Do you go to any support groups? I haven't made it to many of them but I understand that they can be very helpful for getting much-needed feedback and support.
I hope your situation improves soon - hang in there!
Thanks to the good Lord for leading, and guiding me to make earlier(life) decisions that would set a comfortable tone in my (future) financial life.
I was diagnosed while active duty Navy. It was a disaster however, little did I know, I was one of the best decisions I've ever made in my life.
Got a tissue? I've a few (3) great friends that would run across the ocean for me! Love those chicks! No mom, dad, or granny...all passed. My (remaining) family proved to me during the worse I've been in years(2015) that they'd put me in a nursing home and NOT visit. One of my younger sisters even said I was "playing the victim." Go figure. I know it's ignorance. People don't really read to understand MS. I mean, after all, I look amazing, right? 🙄
No spouse, boyfriend...nada! I have Jesus. I'm still just a human who has human moments.
I often ask God to throw me a bone, and He does. I always admit how extremely blessed I am.
I can totally relate. I just KNEW MS would never be a big deal to me...I just KNEW I would not exhibit any of these symptoms other people had talked about. Unfortunately, not everything we KNOW is true. In hind site, I wish I'd exercised more all along. Maybe I could have extended my time without physical disability. However, with MS, that's not a given, either. And, everybody is different so following an identical routine won't necessarily lead to an identical outcome. Share what you are feeling with your doctor...everything...and, if you don't feel like you are being heard, look for another doctor. You will need one who truly understands you. How you feel is important and sometimes you may find people with good intentions don't even understand but you aren't alone and there is help. Personally, I try to count each day as a blessing...sometimes a blessing VERY much in disguise...and just do the best I can. Please, please don't bottle it all up, though. Talk to your doctor. And, us fellow MSers are here as well...for additional support. Best wishes to you, my friend. I'm so sorry you are going through this.
Who are you telling. I fell on the Noland Trail 4 yrs ago. After surgery (1 plate, 6 pins), I still knew I'd return to my A1 status.
Even as a nurse, I believed only in diet and exercise for medication. Worked for the longest of times...just look at me now. I am or "was" a runner...6 miles a day ❤️. I wish I could run 20 miles now...what a high! Loved it!
Oh, I'm extremely blessed, and do my best to stay positive. I guess I'm starting to have human moments!
I've decided to go to a support group or 5! Lol...is that where my husband is?? Kidding!!
Ah, we are all human. Don't beat yourself up when you are. MS has a way of messing with our minds. It can result in so many different feelings: anger, confusion, humility, fear, depression... It can also, believe it or not, bring joy. You will find some very compassionate and understanding folks on your way...and some, not so much. Again, best wishes.
@Kj9681, reading over what you wrote, I wonder if you're expecting too much of yourself. Of course you're going to feel disoriented, angry, and confused. MS is getting in the way of your life and plans and you're only 35! You probably were looking forward to doing all kinds of things you now find difficult or impossible to do--and on top of that you're probably having to reorganize your daily activities around what MS will let you do. That's a tall order--for anyone. Why not tell yourself that mental turmoil is going to be part of the picture for a while, naturally enough, and sooner or later things will sort themselves out better for you? I'm sure that that will happen. You sound like a take-charge person, and I think you'll find ways of rearranging your life that will work well for you.
Thank you for your insight. I'm positive that you're right. I'm following advice and am planning to attend a few support groups. I think it'll help me if I can meet others like me. We'll see how it goes.
Hi, kj9681. As you know, MS affects everyone in different ways, and symptoms come and go and often change. When I got dx'ed with MS, I cried like a baby! I had survived liver cancer at age 19 and thought that G-d was through with me, but I guess he wasn't. I got back up and just tried to live in the "new normal" until I finally had to give up a highly successful legal career. Back down in the dumps until my husband and I left the whole thing behind (he's also disabled from a stroke which happened 5 yrs prior to my MS diagnosis) and moved across the country to start our new lives! We love life together; we travel as best we can, go sightseeing around home; go to community and neighborhood social events to make new friends; and soak up being with one another! I am so sorry that you have, as we say, "hit the wall" but it happens to all of us. Just pick up your head, raise your fist, and break on through! You are allowed to feel sorry for yourself--there is no shame in it. But don't let it ruin your life or your will to live! MS is a monster, no doubt, but you are a thinking, intelligent person and you can learn to live with it and even defy it and do things with your life you've always wanted despite having this miserable disease! As my therapist taught me: eliminate the word "try" from your vocabulary. Just do! Good luck!
Blessings to you as well. Life with MS is a journey, just like life without MS is a journey. The journey may be a bit rockier, but there's no reason that you cannot make it! Keep your head high and just go with it, and may the good Lord help you along!
I so feel the pain not physical but mental. I keep remembering how I use to be..Being in the medical area we always helped people and I find it hard to ask for help. Prayers with you
I was a nurses aid, and I look back and see all I use to do...now I try TRY to see a new life of what is ahead because of this fine group of people..Life changes..Each day now Im trying to point out positives even if I sit and look out the window.On some days, I cant get out of bed, a little girl will paint my toes all different colors her choice.I have given permission to my self to be a hermit and than know when too long is too long.Call out for help.You help others and let others help you.
I’m several years after y’all ran these posts but my first thoughts while reading them are that i know I’ve heard some people say that God doesn’t give you/me more than we can handle
I was a R.N., as well, had to quit, because my MS made my legs like jelly. I learned to make peace with my MS, by accepting what I can do, and staying as active as physically possible and laugh a lot! We will live life either way, but it’s up to us, to live positive in our thoughts, don’t look back, keep pushing forward, and maybe you can inspire someone newly diagnosed, Once I found a DMT ( Ocrevus) and Ampyra, life changing drugs that allowed me to be more active! Physical therapy every year, by a PT that understands MS is also quite helpful! Stay positive, our struggle is our strength 🧡🧡🧡🧡🧡🧡🎗🎗🎗💪💪💪
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