Is it possible to get over the humiliation of this

[Daisycat]

Pennstater -


I am not trying to frustrate anyone by my posts. I am just being honest with how I feel. My only hang up with therapy is I don’t see how I can ever be happy again knowing everything I have lost. It still breaks my heart knowing what will never be.

I do plan to tell my new neurologist all of this stuff. I really hope he is a decent one. I understand your suggestion to go to a support group but I cannot go in public and admit to having this curse. I have a hard time saying the words to people who know I have this. Going into a room with a bunch of strangers would be horrible. I mean what if someone who knows me from work (a client) is there. I would be terrified of them saying something. I am having a hard enough time thinking about going to a therapist so I think being in a room full of people would be way too much for me.

I can’t risk this getting out into being public knowledge. I also do not think they would take kindly to my view on a life with this. I could be wrong but I feel they would get offended by some of my views on this. I really wish I could just have a do over and start fresh… new life new everything.

Jules –


I agree with what you said 100%. No one really knows what someone else is going through and being told my symptom “isn’t that big of deal” is frustrating. I get it that some people have it worse, but that doesn’t make this any easier. Every day is harder for me than the one before. I honestly can’t imagine the pain I will be in 5 years down the road.

[gargantua]

One of the other things making me have a hard time with therapy is I see myself telling them to go bug off since they do not have this curse so they can’t understand how it feels.

There is a psychotherapist I have spoken with in the SF Bay Area who is living with MS, and practicing therapy with patients on a regular basis. She is also able to do remote sessions but I'm not sure of her exact criteria for that as I write this. I don't think MSWorld policy allows referring individual therapists by their URL in forums, but Daisy when and if you are ready if you would like more information on that person, connect with me.

But yes, in a therapist, an ability to treat depression could -at the end of it all- be more essential than to be qualified to commiserate about your shared condition.

You seem like someone who has enjoyed going after your goals in life. This MS thing doesn't give us much to grab onto as we are absorbing it. I keep a to do list, even if things are small. Since April one of my items has been to find a therapist. I've been doing the 15 minute free consultations for a while and even did a session with one, but have not started anything regular yet. I have made every excuse - money (legitimate), vague perceived fears of every kind.... perhaps even fear of life getting a lot better. In that sense, sometimes we just have to plug our ears against all the what ifs our mind throws at us and move forward into the unknown.

[pennstater]

Pennstater -


I am not trying to frustrate anyone by my posts. I am just being honest with how I feel. My only hang up with therapy is I don’t see how I can ever be happy again knowing everything I have lost. It still breaks my heart knowing what will never be.
.....
Going into a room with a bunch of strangers would be horrible. I mean what if someone who knows me from work (a client) is there.
....
I can’t risk this getting out into being public knowledge.

My frustration had nothing to do with your intent. It was born of an inability to help you based on my own experiences, as well as other poster's . I was truly worried about you. We were on vacation, in a rural area and I would make my husband drive where Icould get a signal, or try to time it right, with clear sky and satellite orbit to get a signal. Needless to say, my husband wasn't happy with me. So that contributed to my post.

If all you can see is what you lost, then no, you will never be happy again. What a therapist can help you with is that what you think you have lost is all based on your what if worst case scenarios. They can help you with techniques to acknowledge the fear, recognize it for what it is, and move on in life.

As for someone knowing you, they should understand the need for discretion. If that concerned, go a few towns away. If you break down, they will understand. Some areas have newly diagnosed groups. They will all relate to your fears.

You can keep looking for reasons to avoid getting help and be content to curl up in bed when not at work, or you can make a decision that you want to feel better. You are the only one who can move you forward, others can help and advise, provide words of wisdom, but you own your own happiness. Draw on your fighting spirit that got you where you were in life prior to your diagnosis. You obviously are a strong person, fight as hard for your future as you are fighting against it right now. Make small steps and celebrate each small step.

[Jules A]

I was truly worried about you. We were on vacation, in a rural area and I would make my husband drive where Icould get a signal, or try to time it right, with clear sky and satellite orbit to get a signal. Needless to say, my husband wasn't happy with me. So that contributed to my post.

This is the sweetest thing I have heard in a long time, both your concern and urge to help as well as your husband dutifully getting you to wifi. This is why I'm here! When I was new and distraught I remember those encouraging me and empathizing with my situation. The support I received from MSWorld and the couple of friends I have made over the years have been invaluable.

As for someone knowing you, they should understand the need for discretion. If that concerned, go a few towns away. If you break down, they will understand. Some areas have newly diagnosed groups. They will all relate to your fears.

Exactly and if they are at a MS gathering either they have it or someone close to them does so they aren't going to be judgmental. Going to another town is a decent idea if you are afraid of being outed. I'm on board with that as I don't tell anyone in my professional life either.

[Temagami]

Many workplace insurance plans offer mental health phone numbers. Your insurance might have this option.

Even your Switzerland plan has the caveat that they will not allow euthanasia if they suspect depression- there is an evaluation. Hey, Oregon allows assisted suicide and it´s much closer, but they too will not allow a depressed person to check out. If you reached the point of being bedridden, in pain, and unable to communicate it is hard to believe that your boyfriend would not understand your wishes. You say he does not understand what you are going through. The Australian MS society has a great publication online for explaining MS to teens. This is just the right level of medical tech and explanation for a family member/significant other.

You say you have no future but that is not true. You have a different future. Yes, the fear, uncertainty and shock all send you for a spin. But, you have more control than you think. You can take vitamin D, a probiotic, eat lots of veggies, avoid processed foods, take walks, hang with friends. At my lowest low, I signed up for netflix and watched every comedy special. Studies have shown that MSers in wheelchairs who have an optimistic outlook, meditate, and social emotional support have a good quality of life. You have mentioned several isolation preferences. A strong social web is a huge predictor of health- mental and physical.

Something to think about- I was going to use the HSA at work but after dx I read the fine print on the application and it states that if you ever go on social security disability, the monies that go into the HSA will NOT count towards your social security earnings for disability. I figured that it was not worth having lower earnings on my record.

And... another plug for MBSR and/or the Relaxation Response

[Mamabug]

...
But, you have more control than you think. You can take vitamin D, a probiotic, eat lots of veggies, avoid processed foods, take walks, hang with friends.

... A strong social web is a huge predictor of health- mental and physical.

My functional medicine doctor recommends all of the above, and more. I wish I'd known more, years ago, about how much some of these choices, and others, could affect my health. If I had "changed the things I can" earlier, perhaps the course of my MS would have been different.

But, mostly, I try not to think about the "woulda, could, shoulda". Mostly I try to make healthy decisions in the present.

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.

[Jennaly16]

I feel like no matter how encouraging, understanding, sympathetic and empathetic people are on this thread Daisycat will find a way to be negative, hopeless and restate over and over the same thing.

Daisycat- I'm sorry you feel the way you do. It's too bad you feel this is a "curse" that will take your life sooner than later. I'm sorry you are already planning your end game. I'm sorry you feel lonely and that no one can help you. However, you are also acting like an attention seeker who is finding some sort of joy out of all these replies. It is feeding in to whatever it is you need to function. For whatever advice is given, you have an excuse as to why it will not work. Some of us, newly diagnose, have sought ways to learn to cope. Sought ways to learn to manage.

When diagnosis i took a few months to take it in, educate myself, ask questions, seek advice, research and give myself a pity party. Then i put on my big girl pants, contacted a therapist and refused to be defined by MS. I haven't had one episode, i've had them daily since March. Guess what? I'm working FULL time (in a job where i have to constantly think), raising a 2 year old, laughing, living and not using MS as an excuse. Yes people around me are aware of MS. They ask questions and i educate them the best i can. Not one of them judged me. You get back what you give out.

Most all Daisycat- i am sorry that i contribute to feeding in this thread. I didn't want to and i know i should delete this before hitting submit but it's frustrating to see the negativity. Not because you shouldn't be (you are human- you have feelings and the right to express them) but because so many people are trying to help you and you keep repeating how lonely you are and have no one. Look back through the thread at all the people who wanted to help you and listen to you.

now i'll hit submit and instantly regret it.............

[Mamabug]

... Today I woke up and it took me about 30 minutes to get back to sleep. I didn’t remember my curse at all. I remember I was actually happy cuddling with my cats and dog.


I’m glad you are able to find so many things to put in your journal. And you have helped me some… having someone to vent to helps a lot.

I'm glad. It's nice that you feel that we have been some help. And, it's wonderful that you've had some happy moments.

When you're having a bad moment, conjure up those good memories. Remember them, when you can, with as many of your five senses as possible. When you cuddled with your cats and dog, how did it feel, how did it smell, what did it sound like, what did it look like, (and there might not be a "taste" memory for this). You can pull up that memory even when you are not at home with your pets. That memory can help you to relax, to re-focus and to de-stress.

[sarabeach123]

Mama I had made up my mind to retreat from this thread, but I just had to applaud you.

And yet you didn't.

And felt it necessary to add another elaborate, passive aggressive jab at the OP, veiled as a compliment to Faith. I do have to agree she is spot on about the therapy thing though.



This is not only inconsiderate but also inaccurate. If the OP or anyone has clinical depression what may seem like "not enough" to you most certainly could be enough for her. I have known people with seemingly everything to live for who completed suicide and those closest to them had no clue they were so depressed.

We really should strive to be a bit more understanding or as you have repeatedly offered up refrain from this member's threads.

Hey Marti - I just wanted to let you know that I also retreated from the thread but have been still reading the replies every day. I really wanted to be able to help Daisy, but nothing I said seemed to be helping, so I retired to watch what everyone else was saying. Marti, I think it was so important that you decided to step back in to applaud those who have been giving so much good advice. It is important to show people that they are appreciated, so they will keep making a difference. I try to do this in my everyday life as well, but I do need reminders and this was an excellent reminder for me to make sure I am thanking those around me for the kind things they do on a daily basis. I too want to applaud those who have stuck with it and offered such good advice. It is helping lots of people, including Daisy, and including me as well.

[marti]

Hey Marti - I just wanted to let you know that I also retreated from the thread but have been still reading the replies every day. I really wanted to be able to help Daisy, but nothing I said seemed to be helping, so I retired to watch what everyone else was saying. Marti, I think it was so important that you decided to step back in to applaud those who have been giving so much good advice. It is important to show people that they are appreciated, so they will keep making a difference. I try to do this in my everyday life as well, but I do need reminders and this was an excellent reminder for me to make sure I am thanking those around me for the kind things they do on a daily basis. I too want to applaud those who have stuck with it and offered such good advice. It is helping lots of people, including Daisy, and including me as well.

Thank you. I don't know where that attack came from. I've had many great discussions in other threads from the same person who does not agree with me on this one. But that's ok.

[IAmStrength]

Shame

It’s really really tough Daisy cat. No one on here’s happy with having MS. It’s alright to feel that way. We all do. But we can’t just have a big pity party. It’s too big of a black hole to go down. We have to offer one another support to get through it. I feel for you. For myself. For all the others. We’re all going through it. The more advanced are my heroes. And their still here. Wanting to help. Your going to have to suck it up a little bit and carry on. Be a hero.

Daisycat, you took a huge first step just by registering with Ms world and then putting your feelings out there! I agree with what ocean Pride had to say. It's not easy having a mess and even for the strongest among us there are times that it really sucks but in no way is it something that you should ever feel humiliation or shame! Do you think somebody who gets a diagnosis of cancer should feel those things? I don't, and while cancer gets a lot of the big news stories and things, MS is just as serious!

I have found myself breaking down at many doctors appointments but I've also found myself looking forward to going to some of my appointments because I have some positive news to share with them even if it's only to say that I had a great day the day before!! You are going to have to work hard to latch onto every positive thing that occurs, there's nothing that's too small. Believe me, the slightest negative thing is going to hit you right between the eyes!

Don't worry if the people around you don't understand, the people here on these message boards we do understand! They've gotten me through many a tough situation and no question is ever considered stupid!

You have your whole life left regardless of how long that may be, don't waste it feeling sorry for yourself the entire time!! Do your bucket list just don't hold off on it! I have tattoos I have piercings and I'm getting ready to put some nice bright Manic Panic in my hair soon!

Hang in there! You never know, you may find yourself down the road encouraging somebody newly-diagnosed who is feeling the same way you are!

[oceanpride]

I think Daisy is just wearing her heart on her sleeve. At least around us. And I’m fine with that. In fact I would rather that. I think though , like a child , she’s afraid of the dark. She is down that black hole where it is dark. I just wish she could crawl back up and have another look around. No matter how bad things are , they can always be worse. Need to be grateful that their not , and be happy. If she was my child I would be trying to help. I know only too well what it feels like to think I should have done more. Daisy has brought more stuff out of the closet than the whole works of us put together LOL.
Sorry Daisy I know this is your post ,
I’m just sticking up for you a bit.
And hoping things brighten up for you.

[Daisycat]

Pennstater

the thing is I don’t feel like I deserve to move forward or anything really. Why should I get anything when normal people deserve it more?
And that was very sweet of you .



Unless it’s changed every state requires you to have been a resident for 6 months. And I can fake happy for SwitzerlandZ I do it at work.


Jennaly

I’m sorry you can’t understand how this hell took everything from me. I’m going to be depressed, angry, and negative. If everyone knew I had this I’d go to Switzerland tomorrow. I’m sorry you can’t understand.


Mama bug


i do try to think of happy moments but I sometimes don’t know how to get the negative ones to go away. Ty again for your kinda words


You are right I am focusing on every little negative thing. It’s on constant replay those 2 hours before my meds kick in


Ocean pride

you are correct. I am 100% terrified of this and my future.

[IntoDust]

I feel like no matter how encouraging, understanding, sympathetic and empathetic people are on this thread Daisycat will find a way to be negative, hopeless and restate over and over the same thing.

However, you are also acting like an attention seeker who is finding some sort of joy out of all these replies. It is feeding in to whatever it is you need to function. For whatever advice is given, you have an excuse as to why it will not work.

now i'll hit submit and instantly regret it.............

I hope you don’t regret submitting this because you said so much of what I was thinking. I also agree with Marti about the enormous overreaction to a single episode of double vision. I know Daisycat is worried about the bigger picture but this thread is a pity party like I’ve never seen before.

Daisycat, you need to stop saying we don’t understand because no one is going to understand this like we do! The things you say infer that you believe we’ll all have to give up hopes, our dreams and our careers. That none of us are worth the good things in life. That we’re all “cursed”. It’s not only wrong - it’s offensive!

I understand that you feel alone and this is the only place you feel safe to vent but I think it’s high time you call a therapist.

The fact that you are wallowing in your fear and using meds to escape it is a sure sign that you need professional help to guide you towards acceptance. Anyone on here who feels that saying that is mean needs to see the bigger picture. This thread is a million pages long and yet Daisy still hasn’t made a single step towards helping herself and instead backtracks and doubles down on the negatives.

I know now everyone wants to be supportive but Daisycat is being coddled and I believe that she is relishing the attention right now and I don’t see how it’s actually helping her in a meaningful way.

[Jules A]

I hope you don’t regret submitting this because you said so much of what I was thinking.

I agree and felt her comments were thought provoking while not malicious.

That we’re all “cursed”. It’s not only wrong - it’s offensive!

I feel like I am cursed although I have chosen to continue moving forward for as long as I am able and actually have a happy meaningful life for now. I don't find her comments offensive, way dramatic and unfortunate for her, but not offensive.

I understand that you feel alone and this is the only place you feel safe to vent but I think it’s high time you call a therapist.The fact that you are wallowing in your fear and using meds to escape it is a sure sign that you need professional help to guide you towards acceptance. Anyone on here who feels that saying that is mean needs to see the bigger picture.

I agree 100% but don't think that negates her right or need to continue communicating with us here.

This thread is a million pages long and yet Daisy still hasn’t made a single step towards helping herself and instead backtracks and doubles down on the negatives. I know now everyone wants to be supportive but Daisycat is being coddled and I believe that she is relishing the attention right now and I don’t see how it’s actually helping her in a meaningful way.

She is taking some baby steps, which will also include back sliding, it is to be expected. The focus from a few on how much "attention" and responses she is getting is interesting. I'm not sure what the harm and actually all of us who continue to post are contributing to this. To me when someone continues communicating even if in a negative or oppositional fashion it is an indication that I have their attention and also their consideration so to me its win:win. If it it starts becoming too much of the same with no interest in change I'm sure most will grow weary and drop out which will set a boundary also.

In my opinion she has been a breath of fresh air in a way and has certainly increased traffic, other topics and participation on this languishing board for which I am thankful.