Is it possible to get over the humiliation of this

[Daisycat]

:-)

Sounds like you really a lot of rewards from a job you love.

Yes i do. Even after days like today i wouldn’t do anything else.

[IntoDust]

Everybody has their crap

“Everybody has their crap has been my attitude throughout my entire diagnostic process and it’s just as true after my official diagnosis.
Maybe its the perspective I have from working in healthcare. We don’t know what course any disease is going to take and no matter how bad this disease is - everybody has their crap to deal with in terms of their health at some time or another. This is ours! It could be better and it could be worse. But it is what it is.

[gargantua]

everybody has their crap to deal with in terms of their health at some time or another.

Based on life experience I totally agree with this statement. I have seen some really sick people live vivid, important lives. If I look at them starkly, whatever their circumstances, their perspective really was all they had.

Nobody can tell you how you should plan because nobody really knows all of your concerns. I do think it's possible to get super analytical early on though. There is such a fine balance with what to control and what to let go of, and when. Bless us all.

[Daisycat]

IntoDust – Yep you are correct, everyone has their own crap. Just some people’s crap is a whole lot worse than others. I work in health care too (yes it is animal, but still gives me the ability to see perspective). Most of the time you do not get the 1% case, most diseases follow a normal course of progression. Eventually most people/animals with a certain disease (assuming it is one that you cannot recover from) end up in specific ways.


Animals are different since their owners have different options than we do when it comes to quality if life things.



Also for the people who want to whine about a little cold as their health issues I want to smack then in the face. I have 5 seconds of true piece everyday (when I first wake up) then the memory of what my life is comes back. Then I go into denial phase and do what I can to pretend I am normal. It gets exhausting
.

[Mamabug]

I have 5 seconds of true piece everyday (when I first wake up) then the memory of what my life is comes back. Then I go into denial phase and do what I can to pretend I am normal. It gets exhausting
.

Yes -- choosing denial sounds exhausting. I choose to rest in acceptance. Acceptance is not giving up or surrender.

I am not giving up hope for the future. And, yes -- I do wish that things were different. But I do not either spend all my emotional energy wishing for that, trying to change something that cannot be changed, or denying reality.

Instead, I take small steps every day towards pursuing better health. One of those steps includes cultivating joy and a positive attitude.

My gratitude journal is just one of the ways to cultivate joy.

Grant me the serenity to accept the things I cannot change,
the courage to change the things I can, and the wisdom to know the difference.

[Jules A]

I have 5 seconds of true piece everyday (when I first wake up) then the memory of what my life is comes back. Then I go into denial phase and do what I can to pretend I am normal. It gets exhausting

The beauty I see in this statement is that your current state of mind is what is actually causing the perceived angst and with time you will learn to accept that you can't change the fact that you have MS. It will sting less, I promise. It has to even if for no other reason than becoming somewhat desensitized.

I too remember the phase of waking up every day and being re-traumatized by recalling the MS diagnosis. It was awful but eventually reduced. I didn't do the denial stuff as I understood the criteria that I met leading to a slam dunk MS diagnosis so I didn't even have the reprieve of denial. And I also had seen the horrors of what MS can do.

I wish I could say MS is gone from my mind but it isn't. It still intrudes on my thoughts multiple times a day but the horror isn't as sharp any more. When the thoughts flash through my head now its more of a fleeting wince. For a while it was just a numb feeling and in recent years it has become more of a feeling of gratitude that no matter how screwed up this ends for me I had, at this point, 13 productive, mostly happy and healthy years since the fateful day I was diagnosed.

My thought process can be a little concrete so what I hold onto now is that in the years since my diagnosis I have grossed over 1.5 million dollars, taken 25+ vacations and attended 15 conferences all over the country which I count as mini vacations also.

[Daisycat]

Mamabug –


I honestly do not see how I can accept this. Back before I was in denial I did nothing. I slept , went to work , came home and took a nap , got up took care of my pets and went back to sleep. The only time I had any peace was when I was sleeping. On slow days at work when I “remember” I usually have to go hide in the bathroom and cry or if we are slow enough and my stuff is done I just go home.



I do not mean for anyone to take offense to this statement… *for me* acceptance feels like giving up. I know I will never do most of the things I wanted to with my life, but acceptance makes it 100% real and I am not ready for that. I want to live in my nice little bubble of denial where I tell myself I can do something more with my life and change jobs if I want , or do all the other things I had planned before this.



I know I cannot change this curse… making my end game plan has given me a tiny bit of peace , but I am worried that one day I will wake up and I’ll be too far gone to continue with it. I also know when I discuss this with my boyfriend we will probably end up breaking up. I am not going to compromise on this plan and yes I know I may never need it , but it is very unfair to him if he does not agree for him to stick around.



The thing I found yesterday was when I tried to make a gratitude journal was for every positive I found 2-3 negatives that came with it and at the end I was more depressed… So maybe one day that will help me, but for now denial and venting here is all I can do to help me not jump on the next flight.



Jules –


I really hope one day this does sting less. I don’t think it will change any long term plans, but at least it will help to make however many years I have left not as miserable. I think part of why I am sticking with denial is from reading and reading my MRI reports (probably 50 times by now) I feel like I fit more into CIS.. but since my old neurologist said there is no such thing I am sticking with denial for now. I see my new one in a little over a month so hopefully he will actually talk to me about things.


I learned about the horrors of what this thing can do the first night I was in that hospital. I really considered jumping out of the window… but who knew they would make it to where hospital windows don’t open. I was basically told you have this… good night. So I had a sleepless night with nothing but Dr google to read about what was going to happen to me. Not the best way to treat a patient… but my issue with that place would fill 10 pages if I got into it all.


I wish I could get to the point to where I could take vacations… but so far this year I missed out on a concert I really wanted to go to , a good friend’s wedding , a conference I was excited about , and visiting another friend. I am too terrified of what happens if I get stuck out of town and something happens. A hospital is not an option for me. At home I can at least curl up into a ball and be left alone.

[IntoDust]

IntoDust – Yep you are correct, everyone has their own crap. Just some people’s crap is a whole lot worse than others.

Yes, like the diabetic with osteomyelitis who will lose a limb. Or the man who suddenly died when his melanoma metastasized to his spine after years in remission. Or the schizophrenic patient who writes horrifying multiple page manifestos detailing all of the ways she is tortured by “them” daily and begs for help.
Their crap is a whole lot worse than others. It is worse than most people’s.
One persons pain and suffering does not negate another’s, but perspective is key.

[Jules A]

I wish I could get to the point to where I could take vacations… but so far this year I missed out on a concert I really wanted to go to , a good friend’s wedding , a conference I was excited about , and visiting another friend. I am too terrified of what happens if I get stuck out of town and something happens. A hospital is not an option for me. At home I can at least curl up into a ball and be left alone.

So on the off chance push came to shove I'd rather gamble and possibly spend however much time it takes for me to recover, to the point where I could put myself in a cab or on a plane and return home, curled up in a ball in a swanky hotel room rather than chance missing a great concert or conference.

From what I know MS progression and flares are usually more chronic in nature although I have heard of someone waking up and being unable to walk. Like you I also woke up one morning feeling fine and by 3pm was nearly blind. However I was able to patch my eye and make the 70 mile drive home although probably not my smartest move. I have enough confidence in myself that I trust I'd be able to eventually get home regardless of what happens. In 13 years I have not missed one day of work due to MS so there's that also. Look I know I am blessed in many ways but I didn't get where I am by throwing in the towel upon diagnosis. I'm sure I have also bragged about doing dozens of TNRs and also bringing many of those little 4 legged savages inside to their forever home which actually means more to me than anything else.

I'm not much on weddings so not as much motivation for that but a concert or conference no way am I missing out on that.

[Daisycat]

Intodust


Just because a small percentage of people have it worse than I do doesn’t make this curse suck any less. It is still unfair and knowing I won’t live with end stage of this is a healthy perspective for me.

Jules


The only days I missed due to this was when I was first in the hospital. I will not miss anymore. I just do not know how to get over the fear that I am going to suddenly go blind or be unable to walk. My double vision came on so suddenly so why wouldn’t something else…

And I hate weddings myself , but it was just mostly for my friend. And the worst part I had to make up a lie about why I wasn't going.

[Temagami]

Couple of things.

Fear, understandable, is not a great place from which to make decisions. I get it, I really do. If you are stuck in fear mode at least use it to do stuff that will make your life easier in the near and long term.
I´ve not had vision issues, but had read about them. I used that fear to tell myself to reform my clutterbug ways. It lasted a while, but since no vision issues have popped up, I´ve regressed. My point being that fear made me clean up my space.

Gratitude journal -only gratitude allowed. If that´s not working for you, try writing a letter to someone that you have been meaning to thank. Studies show that it gives YOU a couple of months of an emotional high. Also, planning a vacation brings people more pleasure than the actual experience, so plan away.

The odds of your boyfriend needing to give you personal daily care is long off in time. You are trying to cross all of the bridges now when most are not even in sight. You would benefit from learning the Relaxation Response- google that with the name Benson and you´ll find it.

[Daisycat]

You are correct. I am terrified every day. I’m terrified I one day won’t make it to Switzerland in time, that I’ll lose my job, people at work will find out... I could go on for hours.


If i gave in to that fear 100% I’d be in Switzerland in January. And that’s why I choose denial. Only hard at night when I can’t sleep.

For my bf I don’t think we should break up because I don’t think he’ll take care of me. I think we should break up because he won’t agree with my end game plan.

[Daisycat]

Mostly just posting here for my own need to vent… For some reason (well I know the reason…) but today I feel especially depressed. It’s only been a year, and I am finding myself caring less and less about things I used to enjoy.



I can’t do anything else on my “bucket list” for the time being since I need to try to pay off some of my credit cards. I’m only making the minimum payment on student loans now since if I do end up on disability I will not have to pay them… so I can use that money to pay off other bills and on things that lessen my depression.



I love my job but certain things that I used to just laugh off or complain about to coworkers are making me furious. I am starting to get depressed because I do not feel like I will ever be able to advance anymore than I already am. I just am really struggling to see the point in anything anymore. I know I can never leave my job since I can’t go the 30-90 days without insurance. We’ve had a lot of changes over the past 6 months at my job and a few more that are happening and none of them are exactly things I am happy about.



I actually had a job I would have loved offered to me back in March-(a surgery only clinic), but I ended up turning it since 1. It was a 90 day wait for insurance and 2. It would require on call.
I know some people have it worse than I do and I feel bad for them…. But honestly I ask myself every day why the universe even let me be born. I know this might sound horrible but I wish that I had not “made it” to term and my mom could have had a kid that had a true future.



So basically I just feel stuck where I am and my future is looking bleaker every day. Denial only helps on my days I work since I can come home from work and take my different medicines that help numb the pain. I can’t do that on my days off since if I need to go somewhere I want to be sober enough to drive.



Knowing I am probably going to no longer be with my boyfriend once I tell him my Switzerland plans are something I will not compromise on depresses me, but it is really not fair to him to not tell him. I can’t imagine what that would do to him if he just came home to a note and found out that way. If he can accept if I will be very happy, but I am pretty sure (based on something I asked him when I was first told I had this) he will not.

[Jules A]

I love my job but certain things that I used to just laugh off or complain about to coworkers are making me furious. I am starting to get depressed because I do not feel like I will ever be able to advance anymore than I already am. I just am really struggling to see the point in anything anymore. I know I can never leave my job since I can’t go the 30-90 days without insurance.

Hey so you already know I think a mental health evaluation is important because people with MS have increased rates of depression. And no, not for the reason I also first imagined that we are depressed because we have this cluster of a disease, but there is also data supporting a physiological component to it.

Why do you think you have to wait 30-90 days for a new job's health insurance to kick in? I have changed insurances 4 times since diagnosis and haven't ever had a lapse in coverage.

Looking for a new job has empowered me in the past regardless of whether I actually accepted one and moved on or not. Just feeling as if I have other options and also sometimes realizing the grass isn't always greener are reasons I am almost always cruising indeed.com.

[Daisycat]

I would be surprised if people with this thing weren’t at least a little depressed. I do think having this curse plays somewhat of a part in why we are depressed. It is with me every second of every day (even when I can go into denial phase)… I just do not see how I will ever feel normal again.

All the jobs I have looked at have a waiting period for insurance. It is rare enough to find a veterinary clinic that even offers insurance or pays a living wage… so I am also struggling with that. I know there is one place in town where benefits kick in after a two week “trial” period but it would be an almost a 15000 a year pay cut and they have on call.



I have been looking around at other places, but honestly I do not know if I will be happier at any job. There are things I really love about my job, but some things are getting really frustrating. I really wish I had gone to school for something where I was only concerned about the money and not if I would be happy in it for long term.



Although I honestly believe right now with this curse I am not going to be happy at any job I am at. Every time I see and hear coworkers laughing and making plans for their life I get sick to my stomach. I am looking into labs jobs where I won’t have to really deal with many people. Although I defiantly won’t like the work as much as I do with surgery I think it would be better for me to not deal with as many people talking and laughing and planning for their future.