Observations about this site

[Daisycat]

I’ve made a few observations about this board over the past month or so.


1. Some people here are amazing and truly want to help people, even when they disagree with them.


2. Some people cannot handle people who view things differently than they do. Maybe it’s because they are forced to evaluate their own life, or they think everyone who disagrees with them is wrong, or they just feel what they say is right and if someone doesn’t listen that person is wrong or looking for attention.


3. This board is like a high school – people “gang up” and pick on the person with the less popular opinions. I think everyone should have the right to say what they want to about this disease without the fear of offending someone or having someone go off on a rant.



Not everyone is going to have the same reaction to this and not everyone is going to want to “be positive” and all the stuff. It is bs and unfair that this is the life I was given. My goal before I do my end game plan is to make it to where anyone with a chronic disease will have the right to a death on their own terms. No one should have to fly half way across the world and die alone.




I will probably not post here as much ( after this weekend...)
the attitude of many people here made me know I will never go to a group meeting or therapy if this is how my view on this is going to be taken.


I will find my own way to deal with this which will include medication , occasional drinking ( when I am off the next day , waking up at 545 isn’t exactly fun when you had 3 bottles of wine the night before) , and hopefully moving to Colorado or Washington soon. I will still post venting here on occasion since I am not about to tell anyone in my real life about this. I have no desire for them to look at me like I am a frail and mindless broken person.

Because let’s be honest how many of you really knew much about this disease before you were diagnosed.

I just am at a loss to understand why my view of this is so offensive to some of you. Everything I know about this I have learned the past year from the internet and 95% of the things I read were terrible. I haven’t had the luxury of a Dr to ask questions to. So I have a question I have to use google.

[pennstater]

You are entitled to your opinion. I am sorry you feel unwelcome. Reality is what I said before multiple times:. most of us have been where you are.

We understand the fearfulness and the lonliness a diagnosis can bring, let alone the hopelessness depression can bring.

The difference I see is many of us were open to getting help. We also felt that people here could help us navigate thru this journey. They understand it better than anyone. can

Youy you only have Google - not true. You only choose to use and trust Dr. Google. Have you looked at any of the other sites provided before? Have you thought that just maybe, people here know what they are talking about?

People here haven't been saying it is all roses. But they have been saying you have a choice in how you deal. And sorry that you don't think being optimistic and resilient is a good way to deal - but studies support these traits as beneficial. Do we all backslide and go thru challenges, yes. But we dust ourselves off and try again.

We are not high school bullies - many people here can atest to the support people here provided. You are not open to anything we try to say. So start a post, say venting only, and those that want to vent can. But those who feel you need help can stay away.

[Daisycat]

I just do not see that some of the posters here have ever felt like I have. There are ones who have been diagnosed for years and get upset because I am whining over a little double vision. It is not the double vision. It was how I was fine one morning and that afternoon was seeing double.


It is not that I am 100% against getting help. I just do not see what help I would get. I know my plan now and talking to someone isn’t going to make me decide it is worth it to live if I lose my independence.

And I do not think everyone here is a high school bully. Just the people who all come at once and gang up complaining about what I say and how they don’t want any part of it, but yet they keep coming back. For what it is worth I think you have been respectful and I have enjoyed talking to you.
I have looked at some of the sites and reading about this in general seems bleak and depressing. Most of the sites talk about some loss of function at some point. (even if it is mild).

[Mamabug]

My MS started with what I thought was a weird 3 day flu, followed by stroke like symptoms, an ambulance ride to the hospital, and many months of recovery before returning to work. Mine came on suddenly too. Oh well.

Following a second flare, I lost that job.

I was dx almost 2 years later after 7 MRI's, many many other tests, a trip to Mayo clinic (still no dx), two wrong "possible" dx, etc.

I experienced a severe, debilitating depression. I took appropriate steps and got over it in 3 months.

During the first 6 years, was off work for 8 months twice, and experienced frequent flares and hospitalizations. I lost two more jobs and went on SSDI.

I get it, Daisy. But I didn't curl up in a ball and quit and bemoan my fate. Life happens. Not always the way we plan it. Oh well. Move on. The universe didn't give me what I expected either.

You are making choices, Daisycat, that are not working for you. You are choosing to remain miserable. You have other options available to you.

By the way, how is your gratefulness journal coming? And have you made your therapist appointment? Those are some baby steps you can take.

I had to take steps to move on. Taking steps is the only way you can get yourself unstuck. Yes, it takes courage, but do you want to be courageous, or a coward? It's your choice.

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.

[Carolinemf]

I'm sorry Daisycat,
We will never agree 100% with everyone on here.

I see you had began to answer others posts and thought you may have reached a point of looking outside yourself.I was happy for you. Then i read this.

i have read most of your posts and the responses to them, but have avoided posting in any of them myself as either i couldn't think of anything new to add that hadn't already been said or i was having a bit of a hard time myself and it was quite frankly 'bringing me down'
the tone of your posts.
and the obvious way others were trying to get YOU to understand WHERE THEY WERE COMING FROM.
YOU MUST REMEMBER EVERYONE HERE HAS MS TOO!!!


My first major onset I woke up completely paralysed. Then many years of relapses and remittances.
Try having 5 small children to raise , elderly,sick parents and inlaws to look after , no nearby family to help because of remote living and having to travel for everything for HOURS including meds for others and yourself.

I will be quite frank. There were times when i held our gun or bottles of pills and considered an alternative to my life . most were rejected because of the distress finding me or the lack of income and help it would cause my family. This utter hopelessness was not intermittent, it was ongoing and very persistent. i even moved on to practical ways of claiming life insurance to be of help to my family. I am sure others on this site can identify with this.

I am 51 . Had ms sx since 16. Diagnosed 28. What kept me going was the welfare of those i loved.
I am grateful that in the end I was capable of achieving what i did instead of being dead because of ms before now,like other family members. And in some ways i am much happier (or content)now without the stress of soooo much responsibility.I hope you too will feel this at some point.
I am progressing however and have discussed things like 'switzerland' with my husband if it comes down to a point. these things need to be discussed at least once.

asking strangers for HELP is fine -laying guilt on them for the type of help they offer isn't.
Everyone has THE RIGHT to wallow and feel sorry for them selves if they choose. But they don't have the right to judge and make others miserable for making a different choice.
Thanks all,
Caroline

[Daisycat]

Mamabug-

I get what you are saying and I respect your opinion. I really really do. I have just worked as hard as I can to be the best at my career and always look to move up and further my career. If I have more flares there is a very real chance that I will lose that. I really wish I had someone at wok who I could talk to about this so they could be there for me on my “off” days. (By off I mean the days I can’t get this out of my head and I disappear and cry or spend 30 minutes on something that should take 15. I just keep telling myself 4 more shifts until my 15 day vacation… Maybe a break from the high school drama at work will help.



As for the therapist I have not. My baby kitty… ( ok she is 15) but still may baby had a surgery today so all I did Friday was worry about that and stress about something happening to her since that cat is my life. She was a gift from my best friend a month before she died… so this cat is my heart…




But as for gratitude I actually have three things. (and I actually don’t have any negatives for them)


1. My cat did amazing today and is sleeping off her nice surgery drugs.


2. My boyfriend is out of town so I can keep the apartment as cold as I want and he won’t be here to complain.


3. 5 days until I have 15 days off….

[Daisycat]

Carolinemf



Disagreement is good. It is how discussions start.
I get everyone else here has this disease and I get that is why my view offends some. But I also do not get why people don’t understand how I feel.



I can relate to you about the pills or other things. The reasons I didn’t was reading about how if you mess up you can become worse off than I fear this disease will make me, I didn’t want my bf to find me , and my pets.


I know things like Switzerland need to be discussed , but ehrn do you discuss it? As soon as possible so the “healthy” partner can decide what to do , after you have your tickets, or sometime in between?

I am sorry you are progressing… L

As for laying guilt on people – I do not consider attacks or discussing the view of me in my thread to be help. I do not see how my views can be making someone miserable about their choice. It is great for the people who are still living life and doing things.

[Jules A]

But as for gratitude I actually have three things. (and I actually don’t have any negatives for them)


1. My cat did amazing today and is sleeping off her nice surgery drugs.


2. My boyfriend is out of town so I can keep the apartment as cold as I want and he won’t be here to complain.


3. 5 days until I have 15 days off….

So happy your baby girl did well in surgery! Please consider adding this in the gratitude thread. You know I don't wear the rose colored glasses but that thread really was so uplifting.

And you might learn something about members here. That was the most enjoyable part for me.

[Mamabug]

But as for gratitude I actually have three things. (and I actually don’t have any negatives for them)


1. My cat did amazing today and is sleeping off her nice surgery drugs.


2. My boyfriend is out of town so I can keep the apartment as cold as I want and he won’t be here to complain.


3. 5 days until I have 15 days off….

Awesome.

Now, daisycat, summon up that courage from deep inside and make that appointment! :-)

[Daisycat]

Jules and Mama –

Thank you both. I am pretty sure my anxiety about her surgery was adding to my already terrible anxiety. She has been through a lot and every time not matter what it is I kind of go into panic mode. I guess in a way that is good, because I can understand the owners who are freaked out over minor surgeries. A lot of my coworkers make rude comments about it.

I actually have something for today…

Besides staying up way to late last night.. (my own fault) I slept amazing. I didn’t have to hear my boyfriend snore.
I can finally sleep on my left side (where I got all my new piercings) so now I can get the last one I want on that side.



That’s all I got for today… but again at least I have something and I am didn’t find any true negatives. (except I am so tired… but that is 100% my fault because I thought staying up till3 and watching more Black Mirror sounded fun. )

I'll probably post something in the gratitude thread after work. I need to go to the store before work and I want to read through the thread before posting anything.

I actually have a third - not so much for today but in general. We can wear any color/pattern scrub at work. We used to have to only wear one color. I have so many that I had from my previous job that I couldn't use. I am so thankful I didn't throw then away.

So hey that is two days in a row I have three things... maybe even 4 if I can use my countdown until my vacation. I cannot wait. I have not had a true vacation ever. A few days here and there and the "anniversary" week , but that week doesn't count since I was struggling to even get out of bed.

[JerryD]

I respond to posts here to whine, gripe and poke fun at people who are expecting some logic with a dx of MS ! I have been reading your posts and I have realized that you aren't having much fun with MS !
I have begun to call MS -- Miserable Suffering among other names ! Good luck

[Mamabug]

Jules and Mama –

I actually have something for today…

Besides staying up way to late last night.. (my own fault) I slept amazing. I didn’t have to hear my boyfriend snore.
I can finally sleep on my left side (where I got all my new piercings) so now I can get the last one I want on that side.



That’s all I got for today… but again at least I have something and I am didn’t find any true negatives. (except I am so tired… but that is 100% my fault because I thought staying up till3 and watching more Black Mirror sounded fun. )

I'll probably post something in the gratitude thread after work. I need to go to the store before work and I want to read through the thread before posting anything.

I actually have a third - not so much for today but in general. We can wear any color/pattern scrub at work. We used to have to only wear one color. I have so many that I had from my previous job that I couldn't use. I am so thankful I didn't throw then away.

So hey that is two days in a row I have three things... maybe even 4 if I can use my countdown until my vacation. I cannot wait. I have not had a true vacation ever. A few days here and there and the "anniversary" week , but that week doesn't count since I was struggling to even get out of bed.

Good news! I'd love for you to read the thread and contribute. :-)

Maybe sometime next week, you can add that you made a therapist appointment. :-)

[Carolinemf]

Hi again Daisycat,
I was happy that this post seemed much less confrontational than the earlier one. were you feeling a little more positive as you wrote it maybe?
i would like to apologise if my post hurt your feelings. i felt a bit like giving you a verbal shake up for your own good.
i would like to reply to some of your post.


Disagreement is good. It is how discussions start.
No . thats how fights start. Discussions start with listening and give and take.

I get everyone else here has this disease and I get that is why my view offends some. Your view does not offend any one. It is your criticism that offends. All posters are concerned about your welfare.

But I also do not get why people don’t understand how I feel.No one in any circumstance can 100% understand anothers thoughts or feelings but they do try and empathise and sometimes give advice they think may help.



I can relate to you about the pills or other things. The reasons I didn’t was reading about how if you mess up you can become worse off than I fear this disease will make me, I didn’t want my bf to find me , and my pets.
Exactly !.Let your concern for those you care about guide you. And congratulations too- you have admitted that you are scared.


I know things like Switzerland need to be discussed , but ehrn do you discuss it? As soon as possible so the “healthy” partner can decide what to do , after you have your tickets, or sometime in between?Yes. If you feel you need too. But.... wait until the dust settles a bit and YOU are clear in YOUR own head about your concerns and wishes, and be prepared he may not agree with you.

I am sorry you are progressing… L
Thank you
As for laying guilt on people – I do not consider attacks or discussing the view of me in my thread to be help.
Please be assured not one of the posts I read were attaching you. People were just concerned about you and trying a bit of tough love.

I do not see how my views can be making someone miserable about their choice. It is great for the people who are still living life and doing things.
They are not miserable about choices. Or views. Its just that we all have hard things to deal with and while NO ONE minds helping a friend in need the helper also needs a bit of appreciation for the help offered even if the one being helped doesn't agree with the advice given. Because it was given with the best intentions.


Daisycat ,
I would like you to try and think of things from a different angle.
What you are dealing with at this time is diagnosis and the fear and uncertainty that goes with it.
You have probably been dealing with your 'curse' for a lot longer than you realise.
like many of us you probably have been having symptoms for years.
So while you have had ms you have been studying and have acquired your current qualifications, you have probably worked full time, maintained a lasting relationship and cared for your pets and home.
This is no mean feat! congratulations!!

If you look at your diagnosis as just another challenge to you achieving all your goals I'm sure you may be surprised.

[Carolinemf]

Oh sorry forgot something:
I'm an animal lover too.
Glad your cat is doing well.
I have had many animals over the years. Including kangaroos and glider possums.
Our last cat lived to 18. she still haunts the house.

Last week i spent 3 very tiring and heratbreaking days trying to save one of my cows.
I finally had to put her down because she just wasn't getting better.
A double whammy as she was not just a possible source of income but also one of my favourites.
We have been buying feed for months.
we have lost 3 cows and 4 calves in this drought so far.

[Daisycat]

JerryD-


I think I could handle calling it miserable suffering. It seems fitting.


Mamabug-


I am defiantly going to look at that thread later tonight or tomorrow. I might go to bed here pretty soon. Are you planning to start a new one every week so posts don’t get lost in there?



Carolinemf-


I am terrified every second of every day. My last issue came on without any warning so I am terrified it will happen again.

I already know my boyfriend will not agree with me. It’s been little comments he has said that makes me know he wouldn’t agree with that choice. He supports humane euthanasia though so I am not sure why it is different. I guess it’s because it is someone he knows and loves.

I am grateful for 75% of the posters here, but there are just a few who seem rather rude in their tone and I usually do not have the patience for that. I know it is the internet and things can easily get taken the wrong way, but I still can get annoyed with certain posters.


Part of me is terrified that I have had this for years , because what does that mean for me long term? Does that mean I have less “good time” left? I have thought many times about anything I have had that could be a symptom of this and the only thing I can think of is insomnia. But I have had bad insomnia since I was a little girl, so I really doubt I have had this for over 30 years. I don’t know… maybe some milder things were ignored and passed off as something else. I think I just really want this to be CIS.
If I have had this for longer than I realized than I have done a lot while having this disease. I wish there was a way to determine when it first started, but I do not think that is a thing.

I am sorry you have lost some of your babies recently.



And I appreciate your advice and help. And yes I am feeling better about some things. I have been stressed about my cat for awhile now. (and I do surgery everyday and I know how safe it is 99.99999% of the time and I was still a nervous wreck. Not as bad as I was when she had her spleen out but I was still crying the entire way to work)