When/How did you accept MS as part of you?

[SpanishSergio]

Hi everyone,

I’m new to all this, and really struggling with acceptance… Feel myself from the past and myself living at present are two different people (I dont know if its normal but I am constantly thinking my MS Will be the most aggressive in history so If Will be using wheelchair and have no memory in the Next two days… Dont know if you know what I mean)

So can you share your own experience regarding acceptance and MS??

At the begginning is like if you had an enormous mountain of shit in front of you …

:'(. Thanks so much

[Lycec123]

I’m new here but not to M. S. I thought it time to try speak to like minded people regarding this position.
I’m not sure how to proceed or if anyone will even speak to me.
Do I explain how long I’ve had M. S etc??

Best Wishes
Cecilia

[NorasMom]

Ah, Sergio. I wish I could hug you. All I can suggest at this point is to really try very hard to stop thinking about the future. Focus on the now. You are not going to get your 15 minutes’ of fame by having the fastest and worst MS ever! You’re going to plod along slowly with the rest of us.

Just try to adapt to your new normal, figure out what works for you as far as routines and movement, and then just keep on living.

[NorasMom]

Cecilia, you can post whatever you want here! If you want to tell us about yourself, ask questions, grump about your day, we’re all ears. We also like humor and non-MS topics.

The site is a little complicated at first, but if you play around with it you’ll figure out how to post new subjects, and you’ve already learned how respond to other people!

[Mogace]

Hi Cecilia,

Hope you are as well as you can be. There are no silly restrictions about what you post here. Of course there are Community guidelines - essentially “don’t be nasty” and “don’t do anything commercial” details here Guidelines - Forum (mssociety.org.uk)

It can be good to read a few posts to work out what you like / dislike about some peoples content or style, then join in as and when feels right. I have learned so much from this site, I read some things that made my blood boil, but then read other peoples responses which enabled me to understand some very different perspectives. I hope you find it useful even if only as a distraction .
Cheers
Mick

[alison100]

At the beginning is it like you have en enormous mountain of shit in front of you?

Yes.

But once I had got over having fits of the vapours every time I saw the ads in the MS Society magazine, my natural optimism reasserted itself and I decided that I was, in fact, the one who was going to be really lucky and be absolutely fine despite having aggressive MS.

20+ years on, I know that neither is correct of course. We’re all somewhere in between, and the position on the scale changes all the time and will continue to do so. As for a path to acceptance, well, I think it’s a matter of learning to accept where yu are now. I’m fine with where I am now. If something bad happens tomorrow, I’m not going to be remotely fine with that, and wouldn’t expect to be. Or not until I’ve done a lot of raging and weeping, anyway. It’s always a work-in-progress.

[SpanishSergio]

@alison100 thanks you so much for your answer.

Was your MS aggressive? When you say that , what do you mean by calling it aggressive?

Its a year since my first symptoms started and felt eye pain in summer 2020 and tingling and some kind of dizzinness since april…

Now, as I am writting this message, dont feel any symptom…

So in your experience, when can be MS called aggressive???

I think I read some of your posts telling you did pretty well many years.

Its so difficult to understand this illness, so even if MS starts aggressive… Can MS become softer with time??

[SpanishSergio]

Hiii

I live in Spain… Full of beaches jejeje but I live in the center of Spain (1h to Madrid by car) so if I want to swim … Have to go to swimming pool

I have a big doubt, the first years after diagnosis did you feel the same doing the things you did before diagnosis? I mean…

I suppose there is a ‘big’ relapse or something that changes everything …

Or was it just a slow slow declining?

Thank you so much for your attention.

Really appreciate your answers

[alison100]

Well, that’s what the neurologist called it. I think what he meant was that, right from the start, I has having damaging motor attacks that were healing only partially and leaving some permanent disability in their wake. No one can predict the future accurately with MS, not at an individual level, but some early presentations tend to suggest a worse prognosis than others, and mine wasn’t great.

[Pillbox]

Hi, I was diagnosed with rrms 25 years ago and it has recently been changed to spms. I lost my “proper” job even though I went to an employment tribunal. So, aged 44 I retired on a pension and had a future watching daytime TV (and 2 very young daughters). The prospect was not looking very promising today the least. So, a couple of thoughts for what their worth. Firstly, look upon the diagnosis as a major traumatic life event. Expect to suffer with ptsd for a period of time and just as you might need months or years to get over an accident or being affected by a violent act, don’t try to go faster than your brain will allow you. In my case it was around 6 years to cease being who I was and start being who I am. Secondly, take small steps to creating positive new roles and activities. Again, in my case I got a part time job which I really enjoyed and took up woodwork which I had never done before. My final thoughts are, at some point look to see if there are any benefits to being disabled. I suddenly no longer looked for promotion or status at work but, I did get to be with the kids as they grew up as against getting home from work after they were in bed. Nobody in their right mind wants to have ms, it is rubbish, but for me, time, a bit of retuning my thinking, some support from others makes life tolerable if not wonderful (at least some of the time, but never at 3 am!) Good luck.

[Ssssue]

Sergio, my amigo,

Accept MS, jeje, not bloody likely. She’s not my friend. I don’t have to like her. One day she just moved in, I didn’t even invite her out on a date, never mind any romance. She (you see I remember MS is female in Spain!) just moved in on my life.

Regardless, once in, she made free with my body. Abusing it according to what she wanted. No asking ‘can I do this, or that’, just going ahead and stealing my health, my money (disability costs money and that’s without the effect on my earning potential), she even wrecked my sex life!

But for you, everything is different. So many years have gone past since she invited herself in on me. Today the drugs are better (which we’ve talked about before). You are so much less likely to be seriously disabled than me. You probably won’t lose your marbles (I assume you are familiar with that technical term!) overnight. Medical advances are still continuing to change your likely future.

Ultimately, I’ve had to just about, begrudgingly, give the bltch house room. But even though I’m quite seriously disabled and even have some cognitive damage (shhhh, don’t tell my husband, he thinks I’m sane and have a fully functioning brain!), that really doesn’t mean it will happen to you.

You know you feel like there’s a big mountain of shit just dumped on you (never mind landed in front of you), it kind of still feels like that 24 years later. But I am still me. You will still be you. A clever, funny, good looking (that’s my assumption and I assume you agree), sexy boy with the world at his feet.

I honestly feel that once you either get on a good DMD, or HSCT (if that’s what you end up getting) you will be fine. You’ll go back to your normal life, MS won’t go away completely, but it will recede. Accept it if you can, and if you can’t or won’t, then you just coexist.

Sue x

[Mogace]

@Pillbox

don’t try to go faster than your brain will allow you. In my case it was around 6 years to cease being who I was and start being who I am. Secondly, take small steps to creating positive new roles and activities.

Great post and I really like this bit.
Nice one
Mick

[SpanishSergio]

I wish I could know you!!

And yes I’m handsome jajaja thats what Ive been told many times… But I would change that for heatlh

You are incredibly funny, my boyfriend and me laughed when I was translating your post to him.

Te queremos ! We do LOVE you Sue.

A very good person.

Only want some years without disability

Its not fair people like you all have an illness… And there are so many bad people with no problems in Life… It makes me feel frustrated.

My boyfriend and me also smiled reading How you treated MS as a female jejeje…

Yes, House is female… Fork is male… Jajaja

Every noun has gender for us, for that reason there are songs in Spanish which relate in a romantic relationship the Moon and the sun…

As Moon is la luna (female) and sun is el sol (male)jaja

Besos kisses

[Mogace]

My MS is male “Eric” (still a bitch though)
However I do have a boiling feud with the scumbag known as gravity (definitely female, and viscous as hell) Constantly dropping stuff and she tries to throw me to the floor on a daily basis.
As you say so eloquently, everyones journey is different. Might as well enjoy the ride as best we can.
M

[NorasMom]

I love what everyone’s written. Now, Sergio, listen to us! Many of us are old enough to be your parents or grandparents, so of course we know best!

As far as relapses go, yes, they can be pretty awful. I had one back in 2007 where my skin felt like it was coated in plastic wrap and I cried myself to sleep at night wondering if I’d ever be able to feel the touch of my children again. And then it went away and I’ve never had that problem since!

About 18 months ago, I went through a lengthy period where I couldn’t take a single step through my house without holding onto the walls and furniture. I couldn’t brush my hair, had trouble dressing myself, had many days when I couldn’t chew and swallow solid food. I wondered if this was the way I’d be for the rest of my life, but I got better! Relapses can be absolutely terrifying, but you get through them and life goes on.

[SpanishSergio]

Look!! As I told you before, I have a female cat called Nora

Jaja this picture has been taken now, I woke up and she was drinking Coke jajajaja…

I really listen to you all, I dont know if I can express enough the strength you give me with your responses…

Its very sad to read what you went trough (especially when you said you didnt know if you would be able of feeling again the touch of your loved ones )

I think you have been with MS for so so long , did I read 35 or 40 years some days ago??

You are an example.

[SpanishSergio]

This pictured taken from my home, to you all, this the place where I sit down and read your comments and spend many hours rebuilding my mind.

Have a nice day!!

[Ssssue]

My cat doesn’t drink coke, but he lays claim to every glass of water. For that reason, he is the only member of this household who has a water glass by the bed. Mr Sssue and me drink water out of bottles!

This is my boy when he was a kitten:

And now he’s an old grumpy chap of 15:

Sue

[Crazy_Chick]

@SpanishSergio

Have a nice day!!

Afternoon, this is where i sit i am on a recliner the view is my patio door. I live in a sheltered community. Its for old people lol, we have a bungalow each some are bigger then others. I dont have my own garden it is shared. But i have my own patio area.

Before my husband died in 2017 i lived in a big house with a conservatory with many areas of garden. My husband was mad about cars and racing.

To be honest i have had MS so long i find it hard to remember what it was like without it. I never dwell on the future as i have no way of changing it what will be will be but i can change my today. Today, I am enjoying reading posts and laughed at Nora you lovely cat lol.

I am typing this ad looking out of my window and the birds are on the cherry tree eating the food from the feeders. My little lucy dog is asleep by my side. I am about to get up and have some lunch a healthy one i always eat healthy as i find it helps with my symptoms.

Once i have finished i will rest and then have some fruit lol. whilst i watch some stuff on Now tv or netflix.

Its too hard for me to think back as its not there anymore gone wiped out.

My favorite memory is of a xmas we did it Australian style and had a bar b q. My husband cooked we had steaks and austrlian wine, wore silly hats and I had blown up kangeroos around the garden. All my family enjoyed it and it was SNOWING lol. I had MS back then too. My grandson is now 22.

so many things i have done with or without MS. Mostly without.

Your young and have a great chance of medication. I have primary progressive MS there is nothing for me. So i live the best life i can. I am 70 in a few days. No REGRETS nope just challenges. xxxx thank you for sharing your lovely area. xxx

this is my lucy.

[Ssssue]

Hello Sergio

I was pleased that you and your boyfriend enjoyed my silliness. I had to treat MS as female when writing a response to you. She is a puta!!

I may be a heterosexual these days, but that doesn’t mean a tart like MS takes any notice of that. Your MS is female too, she doesn’t give a stuff who you love, she loves you. Bltch!

I think it’s good that you were translating for your boy too. I don’t know how serious your relationship is, but basically if there’s a future for you as a couple, MS has moved in on him too. MS doesn’t just enter your own life, she is a part of every one who loves you, your friends, family (I bet your mother hates her too!) and your partners/lovers/boyfriends.

I am serious that you should be able to go back to your ordinary life and probably have as normal a life as anyone for years to come, if not always. But once she’s moved in, you won’t be able to forget her.

For the first 10 of more years of my diagnosis, I was pretty much the same person I’d been before it. I worked hard, drove all over the country, (partied pretty hard too), danced, drank and looked the same as I did before. When I got married 8 years after diagnosis, I wore high heels all day, was quite able to drink along with everyone else , looked no different to the next person. And that was without the benefit of DMDs.

So I do mean it when I say given a little time and some good drugs, you’ll be back to the Sergio you were before.

Sue x