I’m such a bad person… I’m sat here in tears and know I’m an awful person… But I didn’t sign up to this…
I must stress that I love my partner so much more than I ever thought possible… But I’m terrified!!! So so terrified!!!
My partner A has RRMS and thankfully looking at him right now he is a healthy happy man. You wouldn’t know there’s anything wrong with him and for that I am truely grateful. However, he’s been told he needs treatment to delay the onset of SPMS. I’m obviously completely naive as I thought he was just get a small attack every now and then. I didn’t realise it always leads to SPMS. We are only young. A is 28yrs old for god sake. I’m scared I won’t be able to cope as I suffer with anxiety and depression. I’m in a fairly good place at the moment with my own mental health, but I’m scared he’s really going to need me in the future and now, as he’s having to select his treatment, and I will feel so overwhelmed I won’t be able to cope.
Hes the “bread winner” so to speak and I’ve recently changed jobs to a less stressful environment for myself, but also looking at being sponsored through university which would come with a very healthy pay rise once I’ve qualified. The reason I’m looking at going to uni is incase he ends up so unwell he can’t work, I will be able to support us both.
But im so scared. I love him so dearly and I’d never leave him over him having MS. But I’m terrified. I’m terrified of him getting worse and how he will cope with it. But I’m also scared for my own mental health. I sound so selfish but I’m scared to death.
We are getting married next year and I keep dreaming of saying my vows to him, with him looking in my eyes, and when I say “in sickness and in health” I just break down… Yes it’s a dream, but I’m terrified… I try to talk to my friends and family but they just brush my fears under the carpet. I’m scared…
OK hun, take a deep breath and try to stop panicking!
One thing you need to know is that RRMS does not always turn to SPMS. Yes it can do so, but it isn’t definite.
The drugs available for your fellas type, will slow down attacks/disability.
There are so many folk here who have had RRMS a long time and are still able to work and lives fulfilled lives. Even those with different types of MS, do manage to live good lives.
If you look after each other and get good support from neuros, MS nurses, family and friends, for both of you, then you will manage.
Thanks for taking the time to reply poll. My understanding from the neuro was it always leads to SPMS. I’m just feeling scared and vulnerable. I’m having to be the strong one as As mum is hysterical and I’m the one saying he will be fine. But inside I’m terrified for his future xxx
Most importantly, you can never be a bad person when you love someone as much as you do.
It’s also very important to understand, is that the future is never as black as you imagine it’s going to be.
I don’t expect that your fella is ready for the knackers yard yet. It’s OK to be scared. Everyone on this forum has been scared, but we’re all still alive and kicking.
The GOOD NEWS is, as you love each other so much you’ll find that your relationship will only get stronger. That’s what the words “in sickness and in health” mean. It’s not a barrier, it’s a promise; about being together, overcoming life’s problems, that’s what comes naturally; and that’s what makes a good marriage.
So, dry those tears, put on a big smile and give him a big kiss and tell HIM how much you love him. Not us.
There will be others here who’ll offer you support and comfort after me. And they’ll all be here to help you whenever you need us.
From all “The Gang” (and you’re a member too).
You are clearly NOT a bad person. A bad person would not care or get upset.
It is reasonable to be terrified by the unknown and when we speculate we tend to only think of the worst stuff. I have been amazed by how adaptable and resilient we can be. Adjusting to the current version of normal can be a challenge. In my opinion you should look forward to your wedding and only deal with stuff as it happens. No two illnesses are the same so it is pointless to see other peoples journeys as the way we are going to go. It is easy for me to say this because I have had this crappy condition for more than 25 years and I was only 28 when it started. I have had great times and crappy times and I find it useful to think about the good stuff.
I initially had a neurologist who would only offer me steroids if after waiting I was unwell. I now have a neurologist who encourages me to know a bit about my condition and my body so that between us we should know if there are options to help. It is vital to build a good support team of family friends and professionals.
Do NOT beat yourself up for feeling cheated, it is also OK to feel sad/miserable/angry for some time just dont let the negative emotions consume you, they steal valuable time and energy that you could use more usefully.
All the best to both of you
Thank you all so much. You’ve all made me feel so much better. Your all right, why waste time fearing the worst, when I have a healthy partner at the moment who I should continue to make happy memories with. The fear of the unknown is scary, but why let it drag me down. I appreciate your kind words so much and you’ve made me see this from a new angle, and for that I’m greatful to each of you xxx
Good for you. Calming down and seeing a more positive side can be difficult. All above have given great advice. You can always come on here and chat to us. Plan yr wedding day and look forward to it. Lots of people are not lucky in love. You two are. Cherish that and one another. You will have a wonderful future, albeit perhaps not always the one you imagined. Anne x
Starting the treatment early can really slow progression down.
Less than a decade back you had to wait for the qualifying criteria to kick in - not so bad now.
We can all think of people here who have led a full life for many years with MS, so please do not think it is all doom and disaster waiting to happen.
Best advice is do what you want to while you can do it - you do not know whether the limit will be reached in 1 year or 20 years.
Go to uni. When you are there, make sure to tell the department you are in about your partner’s problems. Enjoy the experience. Get the degree.