To much in my head right now..

Everyday living
1

Hi. I was diagnosed for almost a year now, but this is the first time that I have manage myself to write something at a forum, so this might be allot and confusing(!!!), but I have to get it out of me…

(sorry for missspells and stuffs, not easy sence english is´t my first language and that I´m crying…)

When I was diagnosed it came as a big chock I had never thought that it could be MS, I did “joust” have problems with my eye… Since then have I had a little problem with numbness but the most significant that I feel is that I easily get tired and sometimes having a hard time concentrating… Life feels kind of hopeless actually, I have sense earlier a blood disease that, joust before my MS diagnose, was stated as still existing but stabile, and I do most likely have at least one rheumatic illness… And as a effect of my first symptom of MS am I suffering from light-sensitivity in one of my eyes…

But even though al these physical stuffs that joust drags me down, do I also and maybe foremost feel that I have changed as a person, and this is really hard, especially since that I feel that my now 2½ year long relationship is affected.

Before my diagnose, I was certain of that he was the love of my life and that we would get married, have a house filled with dogs and catts and whatever and this was my big big dream, and I’m not that kind of person that usually thinks so, I am a pessimist out to my fingertips… and when I got my diagnose I felt that my bf was really supporting, and at lest he seamed to try to learn a bit about the disease and stuffs. After my diagnose I think that I went through a denial phase and after that a morning phase(that stills going on from time to time) and during this time was it al ok.

But now since May or something, when I found about that my medication didn´t work it like really hit me that this was reality and I cant escape it, and since that, my whole life plan has changed… I want to get out there and experience the world, feel romance and stuff, and I have tried to tell my bf this butt he doesn´t listen, he´s always like we can´t afford to travel (which we definitely can), and I don´t do romance etc… and it joust makes me feel so left out… Especially since he in the latest six months have made me sad, he has traveled on his own to visit friends, hi has goten a hangover both before we where suppose to go to a concert, so we missed it, and before my birthday that I had planned to be with the two of us, but that didn’t happens since he felt ill, and the worst thing is that he this time said to me that I was the one who didn´t understand and acted unreasonable to him and that he felt sick, and that he should remember that to the next time I was ill… (its not exactly that mine is self provided…)He have said that he was sorry for this statement and I believe that he is(he is not a bad pursen, he joust lacks abit of empathy thinking sometimes), but still, it stucks, and still hurts when i think of it… It feels like my relationship is dying… I still love him… but I want to do so much more than joust sit around at home, waiting for him when he´s at work, he works as a military so sometimes he’s away for days, weeks and might even be months… And I don’t know if I can handle that, I feel so alone, and when he eventually comes home, he just wants to relax, not help with household works since he´s tired, wish I can understand, but that it also my everyday life…

He will never ever be any kind of romantic, it even feels like sex is just about to come, and foremost for him… And I miss hot, passionate sex really bad, sometimes that is all I can think of, my bf is kind of vanilla sex kind of guy, but i have tried to both ask him and tell him about stuffs we could do that isn´t so different from regular sex, but he is not interested…

I do love him and I do definitely know that he loves me back, and I want to live with him, but I do also want to experience the good stuffs out there before it is to late, I´m only 22 but you never know how fast MS gets you and I don’t want to look back in 10-20 years and think, why didn´t I do that when I had the strength to do it… And my biggest fear is that I´m not shore that my bf understands that or that he will cope with my MS if it gets worse, curse I’m not sure that he truly understands what it means from his part, and my biggest fear is to be sick and left alone by my partner, I rader leave now and have the time and opportunity to find someone that might understand and bear it out than be left when I´m to sick to do anything about it.

Curse I truly don’t think that he understands, he has barely ever been sick, never felt like pain, never ever been depressed and he has almost no since of “living in another’s shoes”…

I´m so upset and confused… curse I love him and we have great times together and he supports me even though I´m not shore that he knows what he supports or comforting… and then it´s al of the other stuffs… I´m so sensitive and al bad things just get stuck, And I do also have an eager to run away every time some new bad thingies happens, just pack my bags and move, leave everything behind… Just because I’m sick, tired, hurt by my own body and lost…

Thank you if you manage to read it all, I´m not searching for a solution, just needed to get it al out, and maby I need some conforting, I don´t know anyone with MS, and my hometown dosn´t have any meating point and the forums online from my cuntry sucks…

And ones more, sorry for spell and confusing

2

Hello Sounds like you are having a really rough time - you definitely did need to off load! I’m sorry that you are having trouble with your relationship. It sounds like, aside from your ms, you are struggling with working out how compatible you and your boyfriend are and this might have happened anyway, regardless of your diagnosis. Are you based in the UK? Do you have an ms nurse or other contact you could talk things through with? Less than a year from diagnosis is still not very long and you are experiencing the normal stages of reaction to the news (and by the way you can go through these in any order, coming back to one or other time and time again). If there’s no one in real life you can talk to you could try the ms society helpline on 0808 800 8000. By the way, sorry you didn’t get any replies for a while. As a new poster your message would have been held for moderation and it had appeared on page 3. Hopefully now it’s pushed back up to page 1 some of the other wise folks from here can chip in with some more useful advice :). Take care x

3

Hello,

I can relate to not having any ms meet ups or groups near me. Does make you feel like the only one in the world with ms.

Maybe your bf is struggling to come to terms with your diagnosis? Its a real shock to others who care for us. It does sound like some “outside” help maybe a good idea. Maybe your gp or ms society (0808 800 8000) to get things moving.

Like sunflower77 said their are some very helpful and wise forum members who have great been a great help to alot of us here.

Goodluck

Darren

4

Hi

Wow, you really do have going round in your mind right now. I hope it helped you to pour it all out. I find that sometimes just doing that can help me to sort out how I feel about something and if nothing else, having offloaded it, it means I can get a good night’s sleep as it isn’t going round and round my mind and keeping me awake.

The others are right - it takes a long while to come to terms with a diagnosis of MS and, as you have noticed we tend to go through periods of mourning, denial, rage, sadness and then hopefully acceptance. We can go through this cycle in any order and repeat stages of it several times before things settle. I find that when I have another relapse, I go through part of it again so don’t be surprised if that happens. The time to seek help is if you find yourself stuck at one of the stages and really feel that you aren’t coping especially if you are experiencing a very deep sadness as this could well be depression.

As far as your relationship goes, it does sound as if you really are questioning whether your bf is the right man for you after all. Of course you love him but is that enough? If he cannot understand that his tiredness is no match for your constant fatigue or that his hangover cannot be compared to you having a chronic condition where you cannot have any control over when you feel unwell or how that will affect you, then I’m afraid I have my doubts too.

I think it may be time to order some of the booklets from this site and sit him down for an honest chat. He needs to know how MS affects you know and how he can support you properly rather than just ‘there, there’ platitudes and he also needs to decide whether he can cope with it should it become worse. It’s far better for you to know now rather than another 2 years down the line.

As you say you are young and you want to have travel, romance, fun, hot sex. You need to know that he can change now and commit to all of that with you and if he can’t then, as the film says, ‘He’s just not that into you’. If you both decide to call it a day, you have so much to offer still and all of us here will tell you there is nothing stopping you getting out there and having loads of fun finding the right guy.

Good luck

Tracey x