Do I cut my mom out of my life?

[Daisycat]

Pennstater

I have lost everything though. My life is 100% different and it will never be the same. I can never just relax after work and take a day off from the gym. I have to give 1000% to fighting this hell because I would prefer to not have to go to Switzerland in the near future (or ever). I am not going to sit back and let this disease cripple me. I enjoy my few hours a night I have to relax. I wish I had more time , but it is what it is.


As for going out of town… I just can’t. If I have an issue at home I am fine staying home until I decide if it is time for Switzerland or if the issue is something that will go away. Out of town I do not have my home , my things , and the familiarity of knowing where I am. I am going to a couple of concerts coming up soon and that is the most I can do. I have a friend driving us so I don’t have to worry about that. Worst case If anything happens, I suffer for a few hours until I am back home.

I want my OLD life back, the one where I had hope and happiness and was able to plan for a future. That is gone forever though.

Mamabug ,

Just because some people have it worse does not mean having this disease sucks any less. I am happy my friends are healthy, but I resent that they are able to have a life and a future. I do not wish this torture on anyone, but it doesn’t make me resent the normal people any less or wonder what I did that was so terrible that I deserve this amount of unhappiness.

[Temagami]

DC,

I am not a dr. and don´t play one on TV. With that out of the way...

It is normal to have situational depression when given a dx like MS. It is clinical depression when it lasts for as long as you have been in this state. While clinical depression is not a choice, it is a choice to not seek help for it.

Two years ago I went to one of those MS informational dinners- this one was to push ampyra. While there I met a woman in her late 30´s/early 40´s with MS in a scooter. We told her about a free MS yoga program that had two locations that was phenomenal. She responded to every suggestion with vehement negativity. She was wallowing in a pit of woe is me. Fast forward a year and she now comes to the MS yoga group. I said I was glad to see her and was glad that whatever in her life had allowed her to reach a more joyous state had happened. She laughed and said, "Oh, I was depressed and got back on my antidepressants." The transformation has been phenomenal and yet, she is still in a scooter. What changed was her attitude.

[Mamabug]

Mamabug ,

I am happy my friends are healthy, but I resent that they are able to have a life and a future.

Those two are opportunities. They can't both be true.

[Daisycat]

Temagami

I know I am depressed. How could I not be with this disease? It is depressing to know you have planned out how you are going to die, but you just don’t know when. It depresses me that I can never have another puppy and that I might not even make it until my one dog I have now passes away. I take great care of her so she should live a long and healthy life.



I have tried many different anti depressants and they all have had the same effect on me. (Rapid heart rate, trouble breathing, terrible insomnia, etc ) I just can’t take a few weeks to adjust to it. Only sleeping 2-3 hours a night is not fun and I refuse to take any medicine that can do this to me.

I have talked to therapists on the phone and all it has done is make me feel worse. They don’t get it and I can’t explain it to them any other way. They always end up suggesting medicine, but as I have said above I cannot take anti depressants.



I am glad the woman you talked about seems to be doing better. For me going anywhere in public and letting it be know I have this disease is not ever going to happen. I can’t even say the name of the disease to the people I order my medicine from on the phone on the rare occasion they ask. I have found things that have made my days bearable for me. Extreme exercise, dieting, Netflix binges , and seeing how many different tattoos I can get help me get through the day.

[Daisycat]

Those two are opportunities. They can't both be true.

It is possible to be happy for someone , but to resent them for what they have. Resentment doesn't always mean you hate someone and wish that they explode in a fiery crash. I am resentful of all the things they have that I never will and never can. It is not just something I can accept and be fine with.

[Temagami]

If George Bush can get a dog in his 90´s, I think you´re ok adopting a puppy. If that feels too extreme, there are many adult dogs in need of a loving home.

If antidepressants are off the table, you can still rewire your brain- CBT, Dialectical Behavioral Therapy, electrical stimulation- not shock therapy, though that is promising to be a therapy, mindfulness, yoga. The yoga would kill two birds with one stone- exercise with meditation releases anxiety and builds strength and flexibility.

You seem to be missing the boat in that MS just happens to be the burden you were dealt. If not MS, sooner or later some crap would invade your life- no matter how much you have planned otherwise. Folks on this forum are not glad, pleased or happy to have MS. Most seem to have addressed the fact that we all have something to deal with or adjust to. Ours is in some ways a solo task as so much of it is hidden. Yes, it sucks to have it. You are allowing it to be worse than it has to be. The overcomingms group has done research and people with MS in wheelchairs who meditate often have a higher quality of life than walking MSers who don´t mediate. These are journal worthy studies. MS is bad enough as it is, why let yourself make it even worse. If, when, it gets really bad, you´ll be the first to know.

I wonder if you are a person who prefers to just rip off the band-aid and get the pain over with and in this situation if you are going to end up with a decrepit physical state want to know now to get it over with. You have more control over the outcome than you think via lifestyle choices and attitudinal choices. There are people on this forum with much higher EDSS scores than you who live a more joyful life. Instead of spinning on the negativity, why not seek out what the secret to their contentment is?

[Jules A]

If George Bush can get a dog in his 90´s, I think you´re ok adopting a puppy. If that feels too extreme, there are many adult dogs in need of a loving home.

If antidepressants are off the table, you can still rewire your brain- CBT, Dialectical Behavioral Therapy, electrical stimulation- not shock therapy, though that is promising to be a therapy, mindfulness, yoga. The yoga would kill two birds with one stone- exercise with meditation releases anxiety and builds strength and flexibility.

You seem to be missing the boat in that MS just happens to be the burden you were dealt. If not MS, sooner or later some crap would invade your life- no matter how much you have planned otherwise. Folks on this forum are not glad, pleased or happy to have MS. Most seem to have addressed the fact that we all have something to deal with or adjust to. Ours is in some ways a solo task as so much of it is hidden. Yes, it sucks to have it. You are allowing it to be worse than it has to be. The overcomingms group has done research and people with MS in wheelchairs who meditate often have a higher quality of life than walking MSers who don´t mediate. These are journal worthy studies. MS is bad enough as it is, why let yourself make it even worse. If, when, it gets really bad, you´ll be the first to know.

I wonder if you are a person who prefers to just rip off the band-aid and get the pain over with and in this situation if you are going to end up with a decrepit physical state want to know now to get it over with. You have more control over the outcome than you think via lifestyle choices and attitudinal choices. There are people on this forum with much higher EDSS scores than you who live a more joyful life. Instead of spinning on the negativity, why not seek out what the secret to their contentment is?

I love all of this except the Bush part.
Adopting an animal when someone is in their 90s seems very irresponsible to me except in the rare case of a family like that with unlimited resources. One of the most important things for me is to outlive my animal babies.

[Daisycat]

I am pretty sure George Bush had more people to care for him and to take care of his dog than any of us ever will. (Because ex president). If I remember right wasn’t his dog also a service dog that was trained to assist him with health issues?



I actually do Yoga a couple of days a week. I just find it incredibly boring so I have a very hard time doing it for more than 10-15 minutes at a time. I have been trying though… it just the most mind numbing boring exercise ever. I get much more stress relief from running or taking my dog for a walk. I had to look up what CBT was… I would be willing to give that a try assuming it wasn’t expensive. I wouldn’t be expecting much because I am the first to admit I am very stubborn and it is very hard to change my mind once it is made up about something.



I have adjusted the fact that I have this dreaded disease. I have planned for my end game and I am doing everything off my bucket list in the next 5 years. I am doing everything I can to make sure I get as many years as possible without any more issues because believe it or not I am not jumping up and down to head to Switzerland.



As for seeking out their secret to contentment… I honestly do not need to know. I have a very small limit of what I am going to live with and it is not much. That is why I am doing everything and I mean everything I can to keep this stupid disease away.

I have found that tattoos are a great way for me to relieve stress. Nothing relieves stress like the feeling you get after sitting through a four hour tattoo.

[Jules A]

I had to look up what CBT was… I would be willing to give that a try assuming it wasn’t expensive. I wouldn’t be expecting much because I am the first to admit I am very stubborn and it is very hard to change my mind once it is made up about something.
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CBT or DBT which I tend to like better, is about re-working your automatic and often maladaptive thoughts. Although having a certified, skilled therapist would be ideal there are actually plenty of resources to self-teach and workbooks can be purchased on Amazon. The thing to I try to impress on people is the exercises and homework might seem corny but do them as required and the evidence backs up this method's efficacy.

Although I find it hard to believe you have failed to tolerated all antidepressant/antianxiety meds except benzos, unless depression was an inaccurate diagnosis and you actually have a bipolar depression, there is also TMS.

[Daisycat]

All of the anti depressants I tried just gave me worse insomnia and a combination of other symptoms. I am sure there are some I haven’t tried , but I am not going to go back to sleeping 3 hours a night on the off chance I might get lucky. Plus the fact that they make you hungry (at least some do) is kind of a big negative when you are on a very restrictive diet.



As for the Benzos I am not needing them as much anymore. I am still taking one 4-6 days a week , but as I have said that is a major improvement over 2 every day of the week. Working out, losing weight , and other stuff has been very helpful in helping me sleep and that has helped my anxiety in general. I don’t think there is anything that will help my anxiety about this disease… but that’s because the dark rabbit hole of Dr google is a bad place and when you spend 14 months there because your old neuro was worthless… you find scary things.



I might look into some of those work books for those things you mentioned, as long as they aren’t crazy expensive.

[Jules A]

I might look into some of those work books for those things you mentioned, as long as they aren’t crazy expensive.

They aren't, just remember that while it won't be a quick fix it can bring about long term, practical growth.

Your history with meds sounds complicated and you would likely benefit from a skilled prescriber, which sadly can be difficult to find.

[Daisycat]

They aren't, just remember that while it won't be a quick fix it can bring about long term, practical growth.

Your history with meds sounds complicated and you would likely benefit from a skilled prescriber, which sadly can be difficult to find.

This is going back from insomnia from years ago that I have decided came from hormonal birth control. (Starting pretty soon after starting it - got a *little* better after I stopped it - came back just as bad when I tried a different version of hormonal birth control)

Before that I would have the occasional night of not sleeping but for the most part would sleep great.

I think that's why I am hesitant to try different meds since I had such a bad experience with my BC and insomnia issue. My anxiety meds work so changing it doesn't sound like a good idea to me.

And as long as they aren't crazy expensive I am fine giving them a try. Defiantly not looking to spend an hour a day on it though and having to wait 6 months for results... but I could easily do 10-15 minutes a day.

[Jules A]

Defiantly not looking to spend an hour a day on it though and having to wait 6 months for results... but I could easily do 10-15 minutes a day.

This is a very common sentiment and always puzzles me especially in your case since you have been miserable for what a couple of years since diagnosis? But waiting 6 months is unacceptable? Is like those with severe anxiety who don't want to possibly wait 6-8 weeks for SSRIs to reach full effect.

As for the BC and insomnia while not my area I'd doubt it resulted in insomnia that never really resolved with discontinuation. IDK but regardless people have all kinds of drug allergies, adverse reactions or paradoxical effects which doesn't negate any further pharmaceutical trials.

Try to keep an open mind Daisy Cat!!

[Daisycat]

I still am amazed that there are people with this disease and other diseases that act similar that aren’t miserable. I don’t understand that at all. I guess I should have said it a little differently. I am fine with it taking awhile as long as it doesn’t take 6 months to see any type of improvement. If I don’t see progress it will be hard for me to get motivated to spend my free time on it.
As for the insomnia it did improve a little once I had stopped the BC , but I was already going through a bunch of different sleeping pills so I am not sure if that messed up my sleep pattern or if it was something else. I just know that it started really soon after the BC.

[Jules A]

I still am amazed that there are people with this disease and other diseases that act similar that aren’t miserable. I don’t understand that at all.

I've never understood it either but I do admire them. Good news is neither of us is there yet so why not enjoy our decent health while we have it?