I am not MS but I have MS

[Sandydemop]

Dear Fellow readers,

something has been bubbling up for a while and I thought I would write about it here. I am not MS. Like I am not my body. If i lost a leg i would still be me. If i couldn't see or walk or even write, I would still be "in here." Ram Dass said: “I am not this body. I am in this body, and this is part of my incarnation and I honor it but that isn’t who I am.” so who am I? I am the love on the inside trying to show myself, despite the multiple failings of my body. Does trouble walking give me compassion for people i used to ignore? yes. Does it make me slow down and even the dreaded asking for help? yes. Does it help me show the love that is the real me? Maybe so. Would be happy to hear your thoughts. thanks in advance for your responses.

[Frances_B]

Well said, and very true. It's partly why I hate hate hate use of the term "MSers" - using that places MS front and centre and is the defining part of the term - we are all more than our MS, and our MS does not (and should not) define us, even though our MS affects so much of our lives, and more so for some people than others as levels of disability increased.

I am a "Person with MS" - which clearly states that I am a person first and foremost, and anything else is secondary to that fact. It is like how you should never call a person "wheelchair bound" - for some people being able to use a wheelchair is actually liberating and enables them to do things they would not be able to do without a wheelchair e.g. get out and about and have some freedom of movement. As my own levels of disability have increased over time, I've found that my value as a person seems to have become diminished as a result. As someone who did not have any impairments until quite late in life, I am so grateful that I was bought up to value people as people, and not prejudge them.

I just wish that this had been a more universal theme in a lot more people's upbringings - so much of this stuff is a question of perspective, and underpinned by bias in the viewpoints of those who use such terminology - whether that be through ignorance, lack of awareness, or just plain deliberate prejudice.

[RoyceNewton in reply to Frances_B]

or a grab for power but nice thought comment, thank you as well

[Sandydemop in reply to Frances_B]

Agreed on all counts. Probably ignorance for most

[rrw5620 in reply to Frances_B]

Well Said

[Vinmack in reply to Frances_B]

Very well written. A little over 10 years and I miss a few things but my good support friends and family help me.

[falalalala]

I couldn't agree with you more

[RoyceNewton]

Nice I like this, but I think you missed one factor. FEAR, fear of the unknown of differences of allowing yourself to be weak and dependant upon others mercy. An issue I know I have. I am not the body, hmm I will think on that, THANKS

[Sandydemop in reply to RoyceNewton]

what did you decide?

[RoyceNewton in reply to Sandydemop]

I need to somehow help newbies in my town

[Neworleanslady]

My mom gets her medication (she does not have MS) from a pharmacist who is an old friend of my brother’s who i was kind of friends with too. She tells me he always asks about me when she goes in to pick up her meds. I thought, ‘how nice. I didn’t realize he thought of me as his friend so much. He’s always been a really nice guy.

Well it turns out that i had mentioned to my mom that i was looking for a medication some time ago. She’d asked our pharmacist friend about it. He asked her why i wanted that particular med ( I can’t remember whoch med it was) and she told because i have ms.

So now she said he always asks how I’m doing with my ms. That’s a blow because he’s not asking about me as a friend, but he’s asking about me as a person with ms. That’s how i feel about things now with this danng disease

[mrsmike9 in reply to Neworleanslady]

I read this as caring. The pharmacist is asking out of concern for you. This is just another side.

[Neworleanslady in reply to mrsmike9]

Yes i see how you see that and so does my mom. I see that too but i also can’t help but feel the other way about it. I feel angry and not like he’s concerned about me as a friend/person but a person with an illness

[Neworleanslady in reply to Neworleanslady]

Not angry at him of course but angry at The overall situation

[mrsmike9 in reply to Neworleanslady]

I get it. The look of pity in their eyes, etc. Perhaps you can ask how he's doing first! Or say how you just rode your bike 5 miles or something before he even asks. (I know....stretch the truth.) But that may cut him off at the pass so it would throw him off. Get creative!! Your new challenge!

[Neworleanslady in reply to mrsmike9]

Great idea! Haha😀 It’s actually my mom that sees him so I’ll have to come up with something good and get her in on the story!

[mrsmike9 in reply to Neworleanslady]

Let me know what happens! It could be really fun!

[Sandydemop in reply to Neworleanslady]

Maybe he really likes you. He's asking for you right? I read it as showing an interest in you.

[Neworleanslady in reply to Sandydemop]

I know he does like me (as a friend) and i really like him too. And i know he’s genuinely concerned. But it’s kinda just that. I hate that he would have to be ‘concerned’about me. I just want him (or anyone) to ask about how I’m doing as my friend not because i have a chronic ailment.

I don’t mean to sound like a whiny baby. I actually think of this situation as a great explanation to others (my mom!) as to how i feel about myself a little.

[Sandydemop in reply to Neworleanslady]

I understand the exasperation but he liked you before he knew you had MS, right? Now he knows more about you. Maybe it isn't pity. And maybe you might want to talk to mom about privacy not spilling your dx to everyone. I never told my mom about my diagnosis. I think it was better for her so she didn't worry about me. Does your mom worry?

[Neworleanslady in reply to Sandydemop]

Yes she worries. I was so relieved to get a Dx when I was having all these unexplained symptoms i thought she would feel that way too. But now after telling her i wish I’d told her not to tell anyone and to let me tell when i was ready. I think she must’ve needed to talk about it to get it off her chest but i was very upset with her because she started telling people right away. But that was many years ago and we’re long since made up. But i still talk to her about how upset i am/was that she told people.

I told her I understood about her telling this pharmacist friend because I’d asked her to ask the pharmacist about the medication and he wanted to know why i wanted it, and I didn’t want her to lie of course. But i told her i hope he exercises his legal confidentiality ethics and doesn’t talk about it to others

[Sandydemop in reply to Neworleanslady]

glad you told your mom how you felt so I'm sure she doesn't do that anymore. As for the pharmacist you're right. Besides he is ethically bound not to gossip about who takes what meds. Also, most people don't really care unless it impacts them. You're OK.

[Neworleanslady in reply to Sandydemop]

Thanks! Great talk

[Birdymom3 in reply to Neworleanslady]

I know the feeling I had a friend that I haven't seen in 2 and half years since my husband died , I've had MS for 19 years because I don't go out and get drunk with her . She started to back off when I told her about my diagnosis.

[Neworleanslady in reply to Birdymom3]

Maybe as she gets older she’ll slow down with the drinking

[Sandydemop in reply to Birdymom3]

sounds like you are finding out who your true friends are.

[lbenmaor]

How true that is. Thank you for expressing yourfeelings.

Leslie

[Sandydemop in reply to lbenmaor]

Thanks Leslie

[lbenmaor in reply to Sandydemop]

You're Welcome Sandy.

[MsBoo]

Loved your statement..I have many thing wrong with me, besides the Monster.. I have gone from hiding my ms to work.. then the monster changed... now have progressive.. no hiding it now.. I love life, am upbeat about everything I have.. I do what I can when I can, and am fighting more than the MS.. so I keep my boat on an even keel... I fish sometimes for help and I have many besides this forum to go to, thank God.. and my Phyc says I am a wonderful person to talk to.. and no I am not hiding anything from her... but my idea is that I will go when the Man upstairs says it's time, but until then.. I am gonna fight all the things that could put me down.. see all the flowers I can... and do all I can do while I'm still here..

I will get off my soapbox now.. haha.............. sometime I just have to put my 2 cents in..

Love you all

Keep up the good fight...

[Sandydemop]

I am a spirit having a human experience

[Sandydemop]

It occurs to me that I am not dying. I have not finished my work. Thanks

[Midnight-Blue in reply to Sandydemop]

I will always remember receiving a sympathy card from a kid I knew (My Father was murdered when I was just shy of my 15th birthday.[I have no idea why I put that in; I just turned 70 but ALL this could have happened yesterday . It’s still raw.]) & he wrote (wording is slightly different:): we are put on Earth for a Reason and when you have accomplished whatever you were put on Earth for, you are then taken away. It made sense then; it makes sense now. WE ARE HERE for a REASON and WHEN we HAVE fulfilled that reason THEN and ONLY then will we be taken away.

Something to think about.😔😔

[Midnight-Blue]

I have MS & most of the time I really couldn’t care less! There are those that have it so much worse than me; I don’t think I have the right to complain considering. So I have MS.Big deal. It could be worse.......

[Neworleanslady in reply to Midnight-Blue]

Sounds like a great attitude. Although I am thankful for the things that i have, i do miss the abilities i have lost quite a bit

[Sandydemop in reply to Neworleanslady]

same. My body acts like i'm 88 instead of 58. Man I hate that!

[Sandydemop in reply to Midnight-Blue]

Midnight-Blue It could always be worse. Needed that reminder. I am grateful for what I still have while i continue to resent the premature aging my body is going through. But everybody's got something, right?

[jackiesj]

Very well said!