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

New diagnosis and before diagnosis
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Lucy is a pretty girl, but with sad eyes. It’s like she looks at you and expresses her love for you all the time I’m sure. Dogs do that. Cats of course are the boss of the house. My husband is our cats slave. I refuse to be. I treat him as a cat, not as my owner (the cat not the man)!

My poor Mr Ssssue spends his life looking after not just me and the cat, but our next door neighbour plus the couple across the street. He is one of life’s carers. Does what he can to care for everyone. I was lucky when I met him 20 years ago.

Sue

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Sue!!! Wonderfull you know what puta means in spanish jajaja again it made us laugh…

Well, our relationship is forever (at least we think so jaja) so he is really by my side…

Your gonna smile this is him… But he is not as serious as he seems in the Pic jaja

His name is Sergio too…jaja

And he is so so worried that told me that if some day this Puta jeje gets so so hard, he would leave this world with me… Hope that day never comes.

How you doing Sue?!!! A great hug from Spain

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I couldnt upload the pic in the last post @sue

So here we go jaja … My partner! And my all!

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Hi. My heart aches for you. I have been going through the same situation. I am in a perpetual cycle of grieving for the person who I used to be (who I miss so much) and the person I am now. I have been getting counselling through MSUK recently and while I still have a way to go, they have given me some strategies to help me through it. Acceptance is part of the grieving process which you must not fight, but I would advise you get help to get you though it. It is important to allow you to then accept who you are today with a positive outlook. I wish you all the best and send you positive vibes. Sue x

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I have to admit that was the lowest point of my life ever. Fortunately, it “only” lasted about 3 months! That was by far the worst relapse I’ve ever had, so that’s also proof that they don’t necessarily get worse as time goes on. The ones since then have been much more mild.

You’ve all posted some beautiful photos! Having a nice place to sit, especially where you can see the sky, is important to me.

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Omg. A gorgeous man. If he’s an nice as he looks, hang onto that man.

How weird, Sergio and Sergio! Do your friends call you the ‘Sergios’? They should, ‘the gorgeous Sergios!’

By the way, talk of ‘leaving the world’, suicide, etc shouldn’t be part of your life right now.

You are young, yes, diagnosed with MS, but that in itself shouldn’t be a reason for suicide. I am a firm believer in the right to die. When the time and circumstances are right.

You’ve said at different times that you can’t bear the thought of serious disability. Don’t expect that you will inevitably end up badly disabled. You probably won’t. I understand the fear. In fact I’m a living embodiment of what you don’t want to become. But please don’t forget I’ve been unable to take DMD’s. Ive had MS for 24 years. Had some horrible relapses. Plus (what you my not have known) a badly broken femur. Right where the leg meets the hip. So smashed bones added to MS disability. And I’m aged 54!

So imagine, you’re young and fit. Yes, you have a degenerative disease, but you have everything in your favour. Not least of which is availability of good disease modifying drugs.

Given a little time, I’m sure that you will realise that your life is not over.

Sue x

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Sueee yes our friends call us ‘los sergios’ jeje

Thanks for your message.

Its true that many neurologists say today MS is controlled in many cases… Hope this is my case.

Do you think honestly that i Will be able to live some years without Big disability?

By the way, you are invited to our wedding. Its not a joke.

Really wonderfull to read you.

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Hi, no one can give you a 100% certainty for anything MS related. BUT there is a lot of anecdotal evidence (particularly on this website) that many people live with MS and without major disability for decades. I as one of those expect to continue for many more and will only worry about things IF or WHEN they happen.
All the best
Mick

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@Mogace Thanks for your answer

How is your story?? Its really helpful to know about stories like yours.

Are you a man?? As its important to me as gender its a factor according to studies regarding evolution (at least what I have read)

and yes starting MS in 2021 is quite different because of the new treatments we have today.

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Yes, Mick/Mogace is a man. But now my feelings are hurt. Why is Ssssue the only one you’re inviting to your wedding? Just because we can’t travel due to Covid or afford the plane fare and hotel bills doesn’t mean that we can’t dream about it! I’d love to see Spain someday!

When you really do start planning your wedding, you’ll have to keep us updated.

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Jeje @NorasMom you all are invited :slight_smile:

Spain is beautiful, my country is famous for its party and Sun… But its full of historical monuments and history. (There was a day when we ‘dominated’ the world jaja)

Cities like Barcelona, Sevilla, Madrid or Valencia are a must!!! :slight_smile:

Also hope to visit UK someday. UK is similar to north of Spain!! Green landscapes and very rainy !!

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Hi again,

Indeed I am a man (although not as handsome as anyone called Sergio!) I do know a couple of guys who live together who are both named Gary! Los Gary’s does not sound as cool. When I got married in 1986 we wanted to have our honeymoon in the Maldives BUT we had no money so borrowed enough to get to Spain and stayed with friends. I have great memories of visiting the Alhambra in Grenada. Then in 1991 my MS entered our lives. Following some nasty relapses things improved so that in 2009 we went to the Maldives where despite small problems with balance I had a brilliant time. So I have every hope that you will also be lucky and have many years of good health.
All the best to both of you. Mick (probably Miguel in Spanish)

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@Mogace jaja had a good time reading you are not as handsome as someone called Sergio jeje (if you know some footballers like Sergio Ramos or Sergio Busquets you will notice that name is very common in Spain jeje)

So 30 years of MS , you are a warrior for me!!

How do you doing now? Do you have more or less a ‘normal’ life ? (Although I always hated Word ‘normal’)

Granada is beautiful but spanish spoken there is difficult even for me jaja they have an accent veeeery difficult jaja even for spanish people from other parts of the country)

Yes Mick can be Miguel in español jeje.

This forum broke a general idea about english people !! As here its normal to think about english people as more ‘cold’ than us jaja you all are very very funny and warm people

Its a pleasure spend time with all of you.

I know spanish people also have some ‘stereotypes’ jaja like all day party or taking siesta jaja not true at all :slight_smile:

And spanish character is veeeery different comparing a catalan (Barcelona) to a andaluz (Grenada) or Canario (canary islands)

Hope your answer Mick!! A great hug, what treatment are you having?? For your comment I understand you MS started aggressive and then got mild??

Viva Inglaterra!!! Long Live to England!!

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Viva España

My MS journey continued with RRMS but I was skiing in 2006 and was even worse skier than usual, in 2007 I noticed that I was walking unevenly, after some tests and an examination I was told that I had moved on to SPMS. I managed to keep working (with some adjustments from my great employer) until 20010. I can no longer do some things I did easily in the past, but rather than worry about what I can not change, I adapt and celebrate the stuff I can do now. Because I am retired I have all day to prepare food for my wife so that she stays healthy to support me. I can do some housework, which usually wipes me out now but I can then take the next day off and do nothing other than recharge my battery. I have an off road mobility scooter so I can still do big “walks” with my wife and there are places where she can ride her horse in the forest where I can go with them, so I am very lucky.
As for stereotypes, I think most people are interesting, it would be boring if we were all the same, and I am glad to confirm that not all English men are drunken football hooligans!
I have been on a number of strong drug trials but have not noticed anything dramatic either positive or negative, but who knows, maybe they are the reason I am doing OK (instead of just being lucky) The term “normal” is interesting because for me todays normal will probably be different from tomorrows and is definitely different from last years. As an adaptable human my goalposts and thresholds keep changing: what I mean by that is that something that I could not cope with or accept some years ago is now as normal as breathing. I hope this makes sense.
Whilst I might not get to any weddings, I’d love to see any pictures of your special day.
Mick

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@SpanishSergio

I would love to come to your wedding, only I vowed never to fly again after the last time I came home from India. I do love weddings. They quite often make me cry, just a bit. I’ve cried at quite a few. Not my own though. I think the excess of champagne made me emotion proof. Some people seemed to think we (Mr Sssue and me) deliberately got everyone drunk. All we did was to fill them up with nice wine!!

I’m quite sure your wedding will be wonderful. All that’s needed to make a great wedding is two people who love each other. And I’m sure that los sergios’ wedding will be fabulous.

As Miguel said, no one can predict the onset of disability for people diagnosed with MS. There is likely to be a way of predicting this in the future, but right now, sadly we can’t be sure. There are many factors that play a part in this. Drugs can be / should be a good way of protecting your body from the ravages of relapses.

I would in general assume you will not be disabled by MS in the short term. Most people are not, even when they have relapsing remitting MS and are not on a DMD. A few are disabled relatively quickly. But you really shouldn’t plan on that being a likely scenario for you.

My top tips for staying as fit and healthy as possible after diagnosis:

  1. Start taking a DMD. My preference would always be for a drug to be as effective as possible, but the risks versus benefits should be looked at for each person individually. Even if your ultimate plan is for eg HSCT, take a DMD until you start that.
  2. Get fit, or stay fit. In particular, work on ‘core muscles’. If you do end up having a disability, the better condition your body / muscles are in the better.
  3. Eat well, but don’t get too stressed about food or faddy diets. This is my own ‘rule for life’. I live to eat rather than eat to live. Without good food, I think life is very dull. Equally, I drink and can’t see there’s much wrong with alcohol.
  4. If you smoke, really the advice should be ‘give up’. But I didn’t, until 10 years ago. So actually my suggestion is that you consider it. Then do exactly what you like!
  5. Learn as much about MS as you can, including drug treatments.
  6. Start keeping a diary to track your health (assuming you don’t already).

Above all, have some fun in your life. Don’t panic or worry about what might be around the corner. Try to get relaxed about what might happen in 5, 10, 30 years.

Sue

(By the way, if you value your cheese, don’t let Miguel/Mick/@Mogace anywhere near your Manchego. He can’t be trusted with it!)

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37

Dear SpanishSergio, you’re in trouble now, my friend. If there are wedding invites going, we all want one.

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Hmmm I agree with all of this except the bit about Manchego, I can not be trusted with any (real) cheese.
M

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I feel a virtual Spanish party coming on… woohoo
M

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@Mogace My friend!! Really encouraging to read how you managed all the events which were coming to your life :slight_smile:

I suppose you had from 1991 to 2007 a really good period of time making things like skiing!!! :slight_smile:

It is hard but I Will try to focus on my present day, you know I am in love with my boyfriend and want to spend many years with him , taking his hand… When you meet ‘the correct person’ you want all the possible time with him. Talking about football hoolingas jaja I am culé (what means Barcelona Fan) veeeeeery culé jaja Spain is divided in 2 parts culés and madridistas jaja …

You all are an example of fighting, you really are. I look to you all when I think to myself that my life is over… (Which is not over at all)

You all dont know me and are very very kind to me, so you all are in my heart.

@Ssssue jajaja manchego!!! I am Manchego! As I was born in a region called Castilla La Mancha , where that kind of cheese is produced , so people from Castilla La Mancha are ‘manchegos’ jaja Pedro Almodóvar is manchego too by the way :slight_smile:

Regarding my wedding you can cry, of JOY!!! Really appreciate your words explaining a good wedding is only about LOVE, and you are right.

I’ve been talking to many people and is quite different MS prognosis now , as there are a lot of treatments people did not have in the past (I’m sorry for you, believe me when I tell you that I wish you ALL the best, for you and your loved ones) I knew people having MS 10 or 15 years without apparent disability

I am very repetitive but LOVE you Sue.

Well @alison100 you are invited too!! Of course :slight_smile:

Hope you all find spanish food nice, jamón ,tortilla de patatas… Spanish food and sun, great combination. And yes, queso manchego!!! Jaja

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41

I forgot that Mick can’t actually be trusted with cheese :cheese: full stop.

To be honest nor can I.

Let’s not mention too much about football. Some of ‘us’ (mentioning no names) aren’t too keen on it!

Just leave the cheese and the Rioja, Mick and I will just sit in our (virtual) corner giggling!

Sue