mermaidia11 10/01/18
Last reply 2 months ago
mindbodygreen in progressive land

I’m posting this as a snapshot of what life feels like having SP progressive MS.

If you are not ready or newly diagnosed, then do yourself a favour and don’t bother watching for now.

I do hope that it also demonstrates a need among PPSP people to have a a separate forum.

When you are young and hopeful that ‘incurable and progressive’is a short term thing and you have the strength and vitality to fight it all off, well I’m sorry but that stage will not last forever.

And the challenges are far greater, as demonstrated by Maria Mooney’s account. Only PPSP will identify with it, everyone else will be bristling with indignation.
But we have to understand all of it, because as every great warrior knows, knowledge is power.

(and you only have people in your army who are loyal and can be trusted – that’s one of minelol)

To my mind the pharmaceuticals sadly aren’t anymore. They invest far to much money in lifelong money spinning chemo research, instead of trying to find a cure. What we all need and future generations do too. So we must all uninte in pressurising them to invest in an actual cure. Not DMDs we are all sick of them and because of them. And we still rumble to progressive station.

We need a cure. Not a medicinal bandaid that rips all the hair off your arm – if you get my drift. I wish I was well enough but again, read attached.

Best of luck love and light to you all 😇

https://www.mindbodygreen.com/0-8225/life-with-chronic-illness-is-today-the-day-i-give-up.html

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mermaidia11
6 months ago

😇✨🧚🏻‍♀️read, not watch, apols🧚🏻‍♀️


hollylb10
6 months ago

I think this is very negative to say when you are young and hopeful, but it will not last, there is plenty of evidence to show people going on to live ‘normal’ healthy lives!

I will remain hopeful and make lifestyle changes to try and slow down my disease 🙂 Because with out hope, what else do you have?!


mermaidia11
6 months ago

Res ipsa locutur

I’m not destroying your hope, (hope by definition is wanting something to happen or be the case)

I’m being realistic about the realities of this illness, because like I say, knowledge is power and we must pester the pharmas to find a cure instead of focusing on DMDs

If you don’t agree, well everyone is entitled their opinion, myself included

I’m not old, I’m 43.

I posted to help, and to give a shout out to the progressives, as stated and I also said for the newbies to disregard. I have the same illness as you, so I’m not mugging the Easter bunny here. I apologise if it feels like I am.

Thanks so much for your compassion and understanding


vixen
6 months ago

Hi @mermaidia. At the end of the day, Shift is all about being able to write what’s going on for you and you write as you feel. I think it’s human nature to feel hopeful, ‘hope springs eternal’ and all that. This thing is, I know it’s early days but there are emerging treatments for more progressive forms. If you look at the huge leap in the last ten years, who knows what the next 5 will being? In the 80’s, HIV was an undisputed death sentence, no way out. And yet now, thirty years o, there is no cure for HIV but it can be managed to enable those affected to live a long life. I get your point about the focus being on the money-making drugs and that’s questionable. Maybe the focus should not be in having hope, but in having faith that the medical world will continue to work tirelessly to crack this monster. Hope you’re having an OK day x


hmcampos
6 months ago

No judgements, just an opinion.

Burying our heads in the sand is not positive but neither was, in my opinion, your way of expressing your feelings, especially for the “youngsters” around here.

It is not because you wrote “If you are not ready or newly diagnosed, then do yourself a favor and don’t bother watching for now” that people will not read or watch what you’ve posted. “…for now” just this little part is already gut wrenching for people seeking support and an ordinary future. Words are important, words and the way they are written/said matter. One of the longest discussions I’ve had with one of my neurologists was exactly about this, the impact that what we read and/or see can have in the way we perceive our disease.

I will not see the video and I take off my hat to you for wanting to raise awareness to SPMS but I wonder if your “awareness success rate” by posting this in here will be worth it.

Best of luck for you @mermaidia11 and us all and may we all bear in mind that the evolution of medicine has already helped many generations with many different conditions.

Let me finish with the sentence of @vixen: “hope is having an OK day”. This sums it up well… 🙂
H


mermaidia11
6 months ago

@vixen thanks

Thanks. I always have a good day, because I actually have rather a lot of blind faith.

But it is waning, as I was promised 20 years ago that a cure was being aggressively researched and within my lifetime.

I was also told my only hope was taking beta-inteferon, by 12 neurologists no less.(it was so expensive they all had to consult at length)

But the only drawback was that I couldn’t have a baby while I was on it. And I had to be on it for 3 years. And it took 5 yrs to get out of your system thereafter.

At 29 and already getting through my bucket list(own successful business,private helicopters to Monaco, a suite at the Waldorf etc I threw myself at life, thanks actually to my diagnosis. I was lucky and made a lorra luck ) the next on the list was that I really wanted a baby.

I took a gamble, despite the outrage of my medical team and the incredulity of my family.

And I had the most beautiful child, who has grown into a stunning human being. I wouldn’t have had her, or my equally stunning son, or been able to fully enjoy their formative years, had I have trusted those twelve same neurologists.

Beta-interferon was banned last year as being useless for MS and destroying quality of life with in the process.The study was never actually finished because a lot of the participants died or refused to continue to be used as guinea pigs

When research and development investment investment into an actual cure, matches or exceeds what goes into non cures, like DMDs and marketing , then I will have hope and faith

. https://www.washingtonpost.com/news/wonk/wp/2015/02/11/big-pharmaceutical-companies-are-spending-far-more-on-marketing-than-research/


teresapascolat
6 months ago

Hi Mermaid11! I did write a comprehensive answer on here before but it got lost somewhere… like my memory😪, I suppose! And so now I’ll just say briefly that I couldn’t agree more with all what you said above! Be well&well!
Teresa


chezy17
6 months ago

Hey Chick.

You know me, I’d rather not know and just live life as best I can and just live for each day, concentrate on the positives which for me are my kids, family and friends. No-one knows what’s round that corner, everyone has bad days but there’re always some good in those bad days too! You have so many positives going for you with your kids and the person you are 😊.
There maybe a cure, there may not but whilst we wait for that we might aswell just get on with it the best we can and if all else fails…there is always 🍷🍷😜!


edmontonalberta
6 months ago

@mermaidia11

Just read your linked article; nothing depressing or wrong with it as far as I am concerned.

Nobody knows how our future will unfold except that everyone’s journey in life will end. So just enjoy as much as possible along the way… 😉


mermaidia11
6 months ago

Thanks ladies and gentleman of kind and thoughtful words. It is what it is, eh?
And thanks for the special message teresahotchocolat lady. (I read the kamikaze wheelchair man too, so I know you understand what I’m trying to say. I feel understood by you all here, thank you

Attitude is 9/10 it I agree, (but we need to use the last little bit to pressurise the pharmas to be more pro active and less mercurial).
However, I get that you don’t want your good years dominated by MS and campaigning etc. I didn’t either, it worked for me. I think I’ve said before. I’m glad I didn’t know fully.. But I’m there now, so just trying to deal.

I was just hoping for a little understanding, because this stage is much harder

. I also get that the DMDs are going to keep it at bay, yay! it’s just it sticks in my throat that they earned 470 billion last year from people with MS. I’d sure as shit find a cure for that amount of money.

But enough of that, I’m gonna put it all in a book and pour my angst and worries for the MS trade and patients into that?

In the meantime, you have a date with Mr Rockerfella lass in New York New York ! You kindness here alone means you deserve that trip away! We should shift crowdfund you.lol


chezy17
6 months ago

Lol I am going in a few years chick, just waiting for the girlies 😊 and for us all to hit 40 😂 but thank you 😊.

I am thinking of doing a parachute jump to raise money though, so watch this space, something to cross of my bucket list. Doing it with people from the school I work in and hey who doesn’t want to jump outta plane 😊.

Take care chick. X


nutshell88
6 months ago

Thats always been my goal find a cure not fill my viens with tixic ok ut might delay relapses but other organs is panicking by the invader poision injected swallowed ect every day month week as if they want our blood to turn blue its not about a doctor or a pharmacy these expensive medicine is expensive enough to raise sn econimy of a small country lets admit it there is corruption in this corrupted global organizations. They want us to print the idea of there is no cure fore chronic immune diseases. Yh right. Hated their teatments from first sight im ok abd when i take them as a side effects of frequent flus they cause i get a relapse so it delays relapses in age 40. Even a child would laugh at this claim. Fund cure researches indeed and quit funding new treatments. So if ms patient tried 3 iv treatment how would a poor lung survive with all due respect to u all i know no one can judge the feeling of escaping ms horrific relapses but who tasted it.
May peace and mercy be upon us all.

Thank you for this sensible thread x

Best of luck
R


mmhhpp
6 months ago

@mermaidia11

Hi i understand you. I am 44 and spms. Going through a lot of s… atm. I know the feeling of feeling s… about ms. Let’s hope a cure can appear soon… keep it high….


rolly
2 months ago

@mermaidia11
i can totally relate to all you wrote. ‘progressive land’ is tough. it’s territory that you can only understand when you’re there. i was rrms for 17 years and was adamant that i would never end up progressive. when i saw other with more advanced ms, i didn’t associate myself with them. i was ‘different’. i was going to beat this thing, i was sure of it.
when i was tentatively dx’d with ms back in 1995, i took it in my stride. doctors told me it might turn out not to be ms at all. so i decided it wasn’t. when it caught up with me 10 years later, when i got my official dx, i still thought, ah well, i’m sure it’s going to be a mild form. i never lost a tear over it. i was going to be fine with it. i was going to be able to handle it.
the first time i actually broke down, fully realising that the rules of the game had changed forever was in 2012, when i was pronounced spms.
since then, it’s been a constant decline. i’m full-time in a powerchair now, no longer able to move my legs, transfer by myself or use my left arm and hand. it’s a daily battle, and it’s tough. yet i’m not ready to surrender.
i’m 49 now. in a couple of months i will turn 50. in the prime of my life, as they say. yet, most days i feel like 100. it’s not the life i had envisioned. but every morning i’m hoping i can get through the day with the smallest possible level of pain, and have an at least decent day. ‘progressive land’ is hard, but it’s the rare good days that still make it worth living.

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