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Never reached out. Feeling lonely.

Hi everyone, I don’t really know how to say in words how I feel… just need to get it out of my head. I was diagnosed at 15 (I’m 23 now) after having 3 really bad relapses in 6 months. Being my parents only daughter I watched them mourn and go through the “loss” of a healthy child to one whose future was uncertain. They are my rock and biggest support but I can’t help but feel a burden to them.

Its been 7 years since my diagnosis and just last week my other half called 999. He thought I was having a stroke. He’s never had to deal with anything quite like this before, he knew of my MS but, like the majority, never took the time to actually read about it. This relapse is pretty bad. I don’t have any sense of taste, I have to close one eye at all times or the double vision is so bad I can’t see. And my balance… well that’s another story. I am currently 220 miles away from him as I recover in my home town with family and as he’s a chef he couldn’t take any time off work.

However, he messaged me last night, something I can’t get out of my head.

“But what if you don’t get better…”

something that’s never crossed my mind before. But now I can’t stop thinking about it. It’s nearly 4am and through the nerve pain and this I just can’t sleep. If I don’t get better I can’t burden him with someone like me. I don’t know a single other person with MS but whenever I mention it to others it’s always the same responses. “Oh I knew someone with MS she’s in a wheelchair now but is doing fine” or “he’s blind now” or even “can’t you die from that?” - always a pleasure to hear…

I dont even even know where I’m going with this post. I just feel so alone despite having the best support around me. I don’t want to burden anyone with my thoughts alongside having to care for me. And I don’t know anyone else in this position hence why I’m posting here. I’m terrified I won’t get better but if I do I’m never taking my vision for granted again.

I think I just need some guidance. Which is why this post is all over the place. I just don’t know what to think anymore.

Jess x

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Hi Jess,

I don’t think your parent’s feel that you are a burden at all. Have you considered the idea that they might feel guilty for having brought you into this world only to be lumbered with MS? And, as their only child, you must know how precious you are to them.

It must have shaken your partner for him to have called an ambulance. It’s obvious that when your partner asked “But what if you don’t get better…” it’s been worrying you, a great deal about what he meant. But being hundreds of miles away isn’t the best way to talk this through.

Communication is vitally important. Can you discus this with your parent’s? You should certainly tell your partner that this is keeping you awake at night.

As for the nerve pain there are several medications to treat this. Ask your GP or MS nurse for advice on this. You don’t have to suffer that

Is there a local MS group you could go to? They can be a good source of support, as you can meet up with people who understand what you’re going through and won’t ask stupid questions like the other people you’ve met.

You said that you don’t know where you are going with your post. You have expressed yourself very well and been very articulate in how you feel. And what’s more you have probably found the best place in the country to express it. There are dozens of men and women who read these posts all the time and many will identify and have empathy and understanding with what you are going through.

Having said that I’ll stop and give them a chance to give you their views; because the depth and breadth of the combined experience on this site is better than all the neurologists you will ever need.

Best wishes,

Anthony

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Well that all sucks! Hi Jess

I’m a late comer to the world of MS only being diagnosed at 47, although I had 10 years of problems and symptoms beforehand. I don’t have a significant other in my life so living the life of a bachelor. I do have family and friends who have been my rock since diagnosis. This of course means I can’t even begin to relate to where you must be at right now, so most of what I’m about to say is only personal opinion.

Your family have obviously had 7 years to get used to the Dx and to understand everything about your MS, I wonder how long your partner has had? It’s no excuse really that he hasn’t done at least a little homework about it but it is just possible that he is struggling to come to terms with it. I would say that there must be strength in your relationship if it can survive a break of over 200 miles for a period of time so clearly there is something lasting there.

He’s going to take some time to adjust and accept it just like your family and whilst they already had that unconditional love for you he’s coming from the other side and so given the right steer and time he’ll come to accept it just as you have. Maybe you can send him some literature or links that would help explain your symptoms.

I also had some of the really unhelpful and frightening comments from friends and work colleagues after first Dx but this was simply down to ignorance of the condition. Some prompt education has now seen them right and anything else that comes from strangers I just shrug off. Easily said I know but if they want to be negative they can go do it elsewhere.

I think you are going to have to be a little patient with your partner but likewise he needs to be a little patient with you and he needs to gain a better understanding of it all, it may just be your job to help him.

I also have had a loss of taste and sensation in one half of my tongue during a relapse and it’s really not nice and my first symptoms were Diplopia stemming from Optic Neuritis. They gave me some special stick on lenses for my glasses that helped correct the double vision, maybe this is something you could explore (Prism lenses).

I like you have felt like a burden to my family but I bet if you asked them they would say you aren’t. I also have those lonely moments feeling like I can’t share with anyone and that I’m all alone fighting this. Whilst not there physically be assured that the whole MS community has got your back and is always willing to lend a sympathetic ear on here.

I wish you all the luck in the world and I hope this latest relapse abates quickly.

Cheetah

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I really feel for you,i have been where you are right now,and each time i have felt the fear that you are feeling I am sure you will get better from this,given time.

My worst relapses have left me bed bound with severe vertigo and severe double vision and at times i thought i would never get any better,but i always have got going again.Its scary but you have to tell yourself you WILL get over this relapse.

J x

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the chances are things will get better after this relapse.

On a personal level your problem is you are not sure which way your partner is going to jump and that means you are understandably ‘all over the place.’

For your partner to say things are alright if you don’t ‘get worse’ is a cop out. You can’t be in a relationship where you know that if you get worse he’s going to disappear.

There is no knowing how things will pan out for you m.s. wise - the question to ask your partner is would he stay if the m.s. worsened.

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Aw Jess, you poor love. I can’t imagine what it’s like to be your age and already to have had this batad disease for 7 years. Poor you. Your poor parents, as Anthony says, they must feel horribly guilty to watch you suffering. My mother feels it and I’m 50. So I can imagine what it’s like for them.

You are doing so well not to be pi**ed off with your partner. Basically, he does need to do some learning about MS if he’s to be a long term fixture in your life. (Have you thought about either ordering a whole load of print versions of the MS Trusts publications? Or alternatively a copy of ‘MS for Dummies’?) But in the short term, it’s not the easiest of things to wrap your head around, either for him or you. The question ‘what if this relapse doesn’t remit’ will always be in your mind. How could it not? In terms of you wondering whether you should be burdening him with you and your MS, if he’s not capable of dealing with it, better to know that now rather than in years to come. Harsh words maybe, but true. The fact that you have MS isn’t the only thing about you. If he can’t deal with the uncertainly of being with someone who has MS, then he’s not going to be very well prepared for life. Since anyone can have problems of one kind or another and generally people make commitments to each other in spite of what life chucks at you.

I hope you are on some heavy guns with regard to DMDs. If you’re not, and it’s definitely relapsing remitting, then you should get that sorted once you’re over this latest episode. It’s as someone very sensible said yesterday I think, a DMD is like an insurance policy. If you’re on a DMD and you’ve still had this frightening relapse, maybe it’s time to rethink which one you’re on and make a switch. Is your neurologist based near your parents home, or where you currently live? If it’s the fist, then maybe take this opportunity to see him/her and talk about DMDs. If it’s at your present home, then get an appointment lined up for when you get back home.

And in the short term, you probably need to concentrate on you and getting over this relapse. Get some decent physiotherapy and maybe some steroids and hopefully soon you’ll be back to normal life

Sue

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hi jess may

have you been offered steroids?

they help make the relapse shorter.

your other half just probably didn’t connect his filter when he said those things.

it’s hard conducting your relationship through a telephone.

if you’d been face to face, he’d have seen dismay and hurt on your face.

tact and diplomacy don’t come easy to some people but if you love him, a sharp kick on the shin should suffice!

tuck up and sit it all out.

it’s good that you’re with your parents.

take care, get loads of rest and then some more.

carole x

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Hugs.

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Hi Jess,

I too was diagnosed in my teens (I was 16), due to turn 28 in the next few weeks.

When it comes to MS everybody has a different story, if you’d like to chat I will always be happy to. I know the feeling of feeling like the only one with it even though I’m not.

Take care

Ross

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