Does this really ever get any easier??
 

I just need some reassurance that we eventually get used to this god awful diagnosis. I'm sitting here crying thinking it has been 9 months. Shouldn't things be a little easier by now? :frown::icon_cry:

Tonight I gave myself a copaxone shot and it hurt more than anything ever before--this was beyond the bee sting pain. I think I did it too far above my belly button and the pain shot up into my rib cage. Maybe there wasn't enough fat that high up? I could barely breath and it is still throbbing.

The shot is just a daily reminder that I have MS. Every single day. Day after day. It's like I can't escape it. Maybe if I could tolerate interferon I would only be reminded every other day, or 3x a week, or 1x a week. Wouldn't that be nice?

I'm sure the fact that I have a fever right now and feel cruddy isn't helping OR that my husband's two teenage kids came over and argued all night like teenagers will. The marriage, the move-in, and the step-parenting is so new and I only had 3 months to adjust before the diagnosis.

THANKS for listening. I think I just had to vent. But sometimes I'm just not sure I can handle this. It seems like just weeks ago I was posting the same thread. How do you all survive this???

hi natalie,

i'm sorry you're going thru this right now.
it sounds like you're having to make a lot of adjustments all at once.
that has to be energy draining.

i've been on copaxone for 5 yrs and it does get easier.
in the beginning my shots and site reactions used to be bad.
it's all gotten much better.
i used to call shared solutions quite a bit to get advice and tips.
it sounds like your pick for this injection didn't work out.
just avoid that area from now on.

i have plenty of fat but i think it's harder to inject if you don't.
i also had to experiement with the depth setting of my autoject.
i finally had to go to about 9. if you don't go deep enuf the site reactions will be worse, in my experience.

please hang in there.
venting is a good thing and we're here to help you get thru all this.
i've been very stable on the C and my disease activity is well controlled.
so try to think of the C as attacking your disease and that you are the person in control.

Natalie! Whatchu doing shooting above your navel? Baaaad girl! No wonder it hurt like heck!!! :(

Sounds like you've got plenty to deal with on top of your MS. Are you taking an antidepressant? The problems remain, but it seems you are more able to cope with a little "help."

Have you tried an MS support group?

I was dxd just a year ago. I took the plunge right away and attended everything I could. Tamiloo and Olhipie signed on with a support group, Common Ground, that takes them skiing and other fun stuff. It is free for MSers.

I've attended NMSS sponsored dinners that had great speakers and workshops free of charge. DH and I went rafting last year (also free) and attended a baseball game with the grandkids that was very inexpensive, thanks to NMSS. (Not counting the parking ticket I got, Lol!)

I was going to go on an MS walk this spring to pay back some of what I've received, but then I broke my ankle. Now I'm bicycling, trying to get in shape to participate in one of the fundraisers.

There's got to be something where you are! I recommend you get involved so you can meet other people like yourself. It really helps to know you are not alone.

Hugs to you, Natalie! I hope things get easier for you to handle. :hug:

Sheesh, Nat, it sounds like you're coping extremely well for all the changes you've had recently. I'd be bonkers.:D

I hope Dear New Hubby is supportive and his offspring, too. Don't be too easy on them. You need all their support to help you all cope with this #%#$#@ disease.

Keep coming here and whine all you want, 'cause we understand..:hug:

I hesitate to say it gets easier...but you will deal with it better over time.

You will get better and you will get worse, and sometimes you will do both, more than once, in the same day, hour, even minute...it is a curious way to live but it doesn't have to cancel out joy.

Sometimes it gets overwhelming...ok, most f the time it seems overwhelming...:rolleyes:

The first year after my dx I wondered how long the whole MS thing would consume my every thought and action...it seemed I would never get past that. All I could talk about was MS, how it affected me, what might happen to me, what research was being done, what new treatments were available, etc.

You do get used to it and adjust, then some new sx will pop up and you will have to do it again. Eventually I just started taking it as it comes, doing what I can when I can and dealing with it if I can't. I don't always deal with it well, but I deal with it. :lol:

Sorry you are having a rough time with it right now.

Natalie - Thanks for venting. I am glad that you are comfortable enough to do that with us so we can support you and help you through this.

You have had a lot of changes this year. Some good, some not so good (teenagers - LOL).

I think most would agree that the 1st year is the worst. During that year you are trying to cope with not only the symptoms but the emotional garbage that goes with any diagnosis. My 1st year was spent with serial exacerbations. I'd get over 1 and then have another. My life just turned upside down.

My 2nd year was better with less exacerbations and now 3 months in to my 3rd year I am far better than I was when this all started. In the past several months I have only had 1 exacerbation and 1 questionable one. Both occurred after being sick. The time between exacerbations is getting further apart, every 6 weeks in the beginning and now down to every 4+ months. For me personally, I truly believe it was the Copaxone and am thankful for the medication. I don't get mad anymore when I take my shot. I see it as a helper in fighting this disease.

As time goes on you will get used to everything. The shots become a mindless task like brushing your hair or teeth. It becomes that routine.

Hang in there and vent all you want.

:hug: This first year is rough on us, isn't it? I'm in my 10th month since dx. The emotional rollar coaster has calmed down a bit, but I still sometimes get an unexpected plunge.

Hang in there. :hug:

To me, it's not a matter of it getting easier, it's really just a matter of getting used to it. Since the MS is here all the time, I just assume it will be here tomorrow, so I just expect it to be this way.

Time will be your friend in coping, all of life's trials and blessings will still be there too. I don't have the energy or the desire to worry about all that either. Today, I need to concentrate on what must be done today.

I'll tell you the truth, though, gray hair is way harder to accept than MS!

So are fine lines and wrinkles, weight gain, more doctors visits, and of course, teenagers. LOL.

It took me about 2 years to be ok with it and not panic all the time. Getting a counselor is a good step in learning how to deal with it.

Natalie, I am sorry you are feeling badly! Maybe it is just an emotional day. I am starting copaxone on Monday and hope that it doesn't remind me daily of the MS. I take weekly shots of B12 now, and just say it is to help keep me healthy. I hope that is the attitude I can use for the copaxone.

We all have to find out way of dealing with the grief and stress of this disease. I work in addiction, and have worked in hospice, and because of that have gotten a pretty positive attitude. I look forward to my life and days, and just don't let things get me down very much. Don't get me wrong, I DO have my bad days also.

I look at it like this. Life happens. At least with this disease I can plan a bit, regarding this disease. I could have an accident tomorrow that would make this disease a moot point. Healthy people can become invalids in a moment.

I was watching a hockey game either yesterday or the day before (I think it was the stars game, so the day before), and they had a young man on there that was 28. He has terminal cancer. A friend of mine lost her 33 year old friend to cancer just last week. My 3 year old niece has leukemia. They found out the day before Christmas. She is on chemo, in the hopsital most of the time, and has no hair left. All this, to me, puts MY disease into perspective.

When I am having a bad day, I let myself have it, cause just because we don't have the worst thing out there, doesn't mean we want to live with this thing we do have... and live with the uncertainty that it brings. BUT, most days I give myself a good dose of perspective, and I find living with this a bit easier.

I am not trying to put you or anyone down, and hope you don't take it that way. I am just trying to put out there what helps me on some days... not all, but most!

I hope you are feeling better soon! Put your head up and say we can take this!! It is doable!

:hug:

I dare say it does get a bit easier mentally. At least the shock wears off and you will witness life going on.

I doubt only having a shot once a week will really take this off your mind. It has been several years for me and still not a day goes by without MS crossing my mind. Not in the panic way as early on though.

I'm on Copaxone and view the daily shot as my fight against this stinking disease. Hang in there, write to us and definitely consider speaking to a professional as depression can also go hand in hand with MS.

Thanks everyone for being so supportive and encouraging. It makes it more bearable that is for sure. I am just overwhelmed sometimes by how nice and caring everyone is on Neurotalk. I was almost afraid that no one would respond--silly me!

I think I may still be in shock mode. I'm glad Jules you (and others) think it wears off over time. I just read on some MS website that people tend to be over the shock after 6-9 months and of course I'm at that 9 month mark. Okay now...time for this to be emotionally manageable! Now where did they get this figure from?!

I have been in therapy for 16 years now. I'm a big believer in talk therapy and anti-depressants if you have to use them. I made GREAT strides and thought for sure I would have all of the skills to deal with this MS monster. But it is throwing me for a loop. I have recently switched to a psychologist where 80% of her clients have MS. She has helped significantly. But she has been out of town for the past 3 weeks. Hmmm...maybe that's why I have been struggling? I see her tomorrow which is good.

Good luck with the copaxone!! I'm sure for both of us over time it will become routine like brushing our teeth. That's what everyone says!

I will say that my DH thought I might have had a brain tumor from the O.N., headache, and dizziness that first came on. So we were relieved it wasn't that and just plain old MS! It's hard for me to think of the MS as a "life happens" sort of thing, though. Not to go into huge detail but I spent years in therapy sorting through all sorts of terrible "life happens events" from my childhood, including abuse from 2 different people when I was in grade school, an unnuturing mother who didn't plan to have me, a schizophrenic father who never got meds and whom my mother divorced, and then my father ultimately committing suicide when I was in high school. So right before I got diagnosed I was 4 months away from being 40 years old. I was on top of the world emotionally after years of hard therapy work. I even took a break from therapy and did fine! I had just gotten married for the first time in my life and my career was taking off after long years in graduate school. I thought -- jeez, the first 40 years were REALLY REALLY hard but I made it through. Pat yourself on the back and get ready for the next and best phase of your life to come. You deserve it. And then this MS thing gets dropped on me completely out of the blue. I think...what? You mean the next 40 years are going to be another &*$!# life trial that involves courage and strength too? Doesn't the universe owe me some kind of break? :confused: Do I have bad karma or something? Incidentally, I always find the cliche "God never gives you more than you can handle" so so so unhelpful. It makes me mad I guess. But I am sure I will keep soldiering on.

Thanks for listening to me vent, yet again. :)

Natalie8,

It sounds like you are processing everything and trying to reason about what was and what is. I think we all do that. I think it is part of the process we all go through when we have something terrible happening in our lives.

A local support group is good because you will meet folks who have been where you are and survived it.

This space is good because you will get some great advice from people experienced with your medicine.

One day is filled with so many adjustments for you. I hope the "C' works for you.

At least you have a few people with you, who can help with everyday chores when you are not up to it. Learn to ask for help and don't be a hero. Stress makes this disease worse.

Find some ways to be good to yourself. For me that is soaking my feet in a foot solution and giving myself a little pedicure.

Thank you for sharing this. I understand your feelings. After surviving a pretty crappy childhood also it was a challenge for me not to be too bitter when MS suddenly showed up in my late 30s.

By the time I was diagnosed I had a great marriage, stable finances and was ready to breathe a sigh of relief. For the first time in my life I didn't regret being born. Sometimes I'm pretty discouraged by the hand I have been dealt and while its not too much of a consolation I know there are people who have it worse. I continue to move forward while I can. Hang in there. Jules

Thanks for sharing your story too and the positive thoughts. I guess every once in awhile I just want to scream at the world "why me?" But you are right that there are people who have it even worse. I have a loving husband, I'm financially stable, my job makes me very happy. And I'm trying to convince the DH to get a dog (can't have cats any more since I developed allergies). I once read an article about "balance dogs" for people with MS. I thought that was so cool, particularly since they suggested Great Danes which I have always been enamored with. I should be thankful that balance isn't a problem and that I can walk. But somehow getting a dog like that feels like a security blanket!! :)

Oh definitely look into getting a pooch! All pity parties aside, lol, I can not imagine a life without my critters. I promise you there is no way to remain sad when you have a silly puppy bouncing around your feet.

While neither of my dogs would be even slightly helpful with my balance they are the best kind of therapy for the soul. Please keep us posted.

Hi Natalie8 - I am remembering from my daughter that it is best to take it one day at a time always remembering that tomorrow might be better - not to sound like Pollyanna but it's just good for one's mental health. Barbo

Adjusting to a new marriage, especially when there are teenage kids, can be hard on anyone . . . let alone with MS being in the picture.

I was married, had a difficult teenaged step son and two little ones when the MS took a turn. I adored my husband (still do), but we did not handle most things well together. We had a very active lifestyle, and things changed a lot when I got sick. He was also extremely over-protective of me, and I was struggling hard to keep my independance through that time. The stress of it all was too much for me, and I ended my marriage just so that I could have less to deal with.

I thrived on stress at one time, and prided myself on multi-tasking. When the MS got bad, I just couldn't do that any more, and had to "simplify" my life as much as possible to cope. I wish I could have found a way to do it while still maintaining my marriage, but I couldn't.

Since our break-up, my ex takes the kids 2 nights a week, and has the youngest at least one night every weekend. He feeds and entertains them with movies, plays, swimming, camping, fairs, vacations, etc., and he balances out their live's in a way that he never would have done if we were still together.

He is still my best friend too.

Obviously I don't have the answers :rolleyes:, but I would suggest you try to find a way to stay on the fringe of your husband's relationship with his kids. Ask him to take them out sometimes when they come to visit, so you can maintain as much "status quo" in the house as possible, especially when you are not feeling well.

Cherie

Thanks for sharing Cherie. That is great advice. The kids are here every other weekend and one weeknight each week. I have asked DH to take the kids out without me several times because it just got overwhelming. Even without the MS diagnosis it was going to be difficult, largely because I was living by myself for many years and had my own routine going on before I moved in. I like spending time by myself -- in fact I need silence to recharge. In the past 2 years I've developed a very low tolerance for loud noise, stimulation, busyness etc. I always wondered if this was MS related. I can't have the radio too loud in the car, or the television on, or I get annoyed with too many people talking at me. The kids always have to have the TV on, even when they leave the room, and it drives me crazy. But I've set my foot down several times. Oh yeah, and did I mention there is a "crazy" ex-wife in the picture? She was fine before we got married and then she snapped. Now she is another added stressor. And she is re-married with another child yet she is still acting out! Anyhow, I digress......thanks again for your story.