Last reply 1 month ago
Circular Doors

I have had MS since 2012. In June they figured out it was no longer rrms but spms. Fine I can get through this but I am finding that the world seems to be colder. People who where around started to fall off when I got diagnosed in 2012 but now it’s like I am an inconvenience because I can no longer go to them for coffee or meet them somewhere.
I tried other sites and got messages shaming me for going to A&W for their MS day or asked about my religion, relationship status, and than asked to go to another site to have personal chats within an hour (super weird feeling, FYI). I just end up feeling like we are isolated compared to people with other disorders and no one understands so they leave. Maybe a bad day. 🙁

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itsmewithms
1 month ago

This summer I was reclassed from RRMS to SPMS. I have also had an issue with my right hip that required a hip replacement two years ago. Although the hip joint mechanics are all fine I have residual gait, strength and balance issues with it. I have explained my issues to others (like my boss) as related to my hip. So basically I have had a cover for my MS. Only my family and one friend knows that I have MS.

The decision to disclose is a big one. I haven’t as I don’t want a pity party and don’t want to be shunned as you note above. It is also just a fact that if we stop participating in the things we did with friends that the world keeps spinning and we just are just an observer. I don’t expect them to take extra effort to drag me along.

I was hit by a layoff at my company in early June. It wasn’t really a surprise as my boss really wanted me gone. She was the new boss since the guy that pulled me into the area retired. What he wanted and needed and his vision for the department was different than hers and she did not want an accountant type person. I think she had been tortured by auditors in the past ;-0 who knows.

I used to be an extreme extrovert and wanted to do everything, everywhere but have found myself becoming more introverted..like my husband and daughter. It is actually maybe a good thing for household harmony 😉

I start to realize that I have friends and I have people I did things with. The people that I just did things with will fall away when I don’t do things with them anymore. I hold onto those that were true friends. Hopefully that make sense-


jen1973g
1 month ago

I’m feeling the same it’s not my friends it’s me I’m like a shadow of my former self I feel no one gets me I feel angry


sherry_wine
1 month ago

@jen1973g I hear you for sure. I’m not ashamed of who I have had to change to deal but definitely feel the shadow part.
@itsmewithms I really appreciate you could hide this portion of you. Even better to hear it brought your family together to introvert. I am not a type to. I like advocating for the cause. If we don’t talk about it we can’t get help to stop it and I a 100% will take everyday like this talking about it if it means the next generation may not ever have to deal with it.
I completely understand the job. Got fired, disowned by my mom, and lost use of a leg this summer. It get’s better. Now I can get my dog to walk me and my family laughs I can’t say ghosts this Halloween 😁


itsmewithms
1 month ago

What? Disowned by your mom? What’s with that? more proof of the role genetics plays is coming out…and/or early life influences that she probably made for you…do you think it is guilt that she is dealing with? just wow.

? you can’t say “ghosts”? during one of my relapses that impacted my speech I couldn’t say “pretty, pretty, kitty” fast…good thing that doesn’t come up very often and only impacted me until the steroids kicked in ;-0

Until I no longer need to work (like another year) my MS is not advertised. I don’t think anyone would hire me knowing that I had MS. For too many the perception of MS is that you are very disabled and won’t be able to get to work, they won’t be able to accomodate you and you shouldn’t be around stress. The type of work I do – and enjoy – involves a lot of stress. But I know that I should remove stress from my life…just trying to hold on one more year and then I hit the right age, etc. of what I can qualify for.


sherry_wine
1 month ago

@itsmewithms if you can hold on to the job one more year all the power to you and I will keep hoping you do. It’s nice getting that purpose even if it is hard somedays.
My mom is my mom. She’s been trying to get rid of me since I was 12. She’s not well mentally so if I can’t do thing’s for her she no longer needs me. Made me stronger despite what it is.
As for ghosts it’s weird. I guess in your case you were not singing the soft kitty song :p


rivka
1 month ago

@sherry_wine, I get the mom thing. Really get it, and that’s all I’ll say here. @jen1973g, I have been thinking exactly that, “I’m a shadow of my former self”. My old self wouldn’t recognize my MS self.
But after making those whining statements, I try to find the good and positive in where I am now, and enjoy it, as best I can.


itsmewithms
1 month ago

Not singing the soft kitty song ;-0 just greeting the female barn cat before chores and complimenting her…I usually call her the “pretty, pretty, kitty” but it would get all tangled up. So strange. Then realized the “pr” sound and the hard “k” were tricky. Never had an issue like that before and it only lasted the weekend. Pounded home all the different things that MS could be.

I interview for a one year contract on Monday. I talk to the Wisconsin Disability program on Tuesday. Not sure if I know if I will have the contract yet by the time I meet with them on Tuesday but I can at least check if I qualify for the Wisc insurance program as a disabled person. It is supposed to be set up on income…so I may not while I am working but if I lose the contract or can’t fulfill the contract as I decline it will be a backup.

My mom was finally correctly diagnosed as bi-polar when I was in high school. Before then it was just general “schizophrenia”. On Thorazine for years which has awful neurological effects and then lithium which was better. She would have extreme peaks and valleys. When she was on a high she was a great musician (not) and great follower of the faith ;-0 and when she was low she usually had a migraine and locked herself in her room or was just a beast to be around. Makes me wonder how many of us with MS have a mother that was on some form of neuro drug when or before we were in utero.

She also had a list of people that could do no wrong and people that could do no right. Thankfully I was on the “good” list but now realize the damage she could do to the relationships of people on the “bad” list. For example she would disparage my sister and I would defend them or explain what she was complaining about and she would brush that away angrily. I could tell she wasn’t willing to hear it. My sister died with an angry hole in her heart regarding her mother and that was sad. They had so many angry interactions there wasn’t much chance for reconciliation. My sister really wanted her to acknowledge the damage she caused when she had her breakdowns but when she came back from the hospital all “better” she would just breeze in the door like nothing ever happened. I’m not even sure if my mother even remembered these angry exchanges but knew she wouldn’t have thought she had anything to apologize for. They were “when she was sick” so she didn’t think she had to own it.

I remember picking up all the pieces one time when she went into the hospital and having to do all her chores on the farm (with one other brother) and to school full time and pick up all the household things like cooking, cleaning and laundry (which there is a ton of on the farm and she would let it build up while she wasn’t well) so I was insanely busy and proud of myself for having everything in order when she returned so she could rest and be in a happy place. She came in and criticized some picky point like I hadn’t put the clean dishes away how she just liked. I about just lost it but “corrected” it and moved on. That was really about all I could do. That and go to my room and cry.

I just resolved to never be like her in that way and am told by my close friends that I am the most grounded person they have ever known. I just hope to be that for my daughter and maintain a healthy relationship with her. That is one family tradition that need not continue 😉

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