Maby not something I should post here, but somehow I feel like this wonderful group of peoble is the only place to turn to. My arm has been so "heavy" for 3 days, and I have got all these "little" things going on. Nobody can see them and I feel a little bit like just plain boring when I tell someone. I want so much to know what this is, right now! I want to have a name for my excuses, and I want to start treating it! I have support from my husband and my parents but yet I am bored about trying to explain to them (I try not to worry my kids about this). But it all feels so silly. Sorry I just wanted to shout a little... my next neuro visit is not until Nov 8 and I feel like I can't wait, but sure I can, I am not feeling sooo bad, I am just feeling sorry for my self. I will get over it....sorry.
I understand what you are saying I think. There may be something lost in translation with "boring" but I get it. No you are at the right place. Before I was diagnosed my husband and friends did not understand. They thought If I would stop thinking and talking about it everything would go away. Of course it did not.
It is hard for someone who does not have unseen symptoms to understand.
The not knowing what is wrong is very hard. I was a total mess by the time they figured out what was wrong with me. It made me crazy. I went into the worst depression by the time of my diagnosis because I was going it alone. My husband did not go to appointments with me and we did not talk about it. Doctors who started the whole MS thing then told me it was in my head, depression or something.
It was very hard. It is important to reach out as you are doing. You need support no matter what they find out.
You and no one in your situation is a lone we are here. I care. November 8 is not that far away. Keep courage my friend.
Alex, thank you for understanding me so well, I knew it would be releasing (not good word?) to hear from people here that have been there. And you had so many years not knowing...whow how patience you must be.
About the word boring..I do feel that I must be boring to the people around me because of all this, I feel like my symptoms is all that I am these days. But maby it sounds wrong when translated.
Thank you so much for all your kind words and for caring, I appreciate it so much.
My best to you,
Hi Dagun, this is the place where you can come and talk about ANYTHING. Even if it doesn't relate to MS. This is one of the safest places on the web to let it all out and I am glad you found us.
As for boring - Alex is probably right that your use of the word here doesn't translate well. Being bored normally means that there is nothing of interest that you want to do. English is such a difficult language - you are doing a great job with it.
Thank you both for your support, this is the best place to be when I need to "speak" to people that understand all this. No matter how different we really can be, there is always so much we have in common. Thank you so much.
(sorry about my English)
Thank you Lulu, I already feel less alone out here, having you all there..
The thing is that when I don't have this kind of group here in Iceland, I have no one to turn to except for you all. But it would be better if I where diagnozed then I could go to the MS center here and talk to people there. But they are not active on the internet. Or if I have something else I would at least know what I am dealing with.
Time always seem to go so fast, but not when I need it to :). Boring is it the same as being tiresome?
Iceland the USA it is all the same. I had no support besides the forum until my diagnosis. I went to all these MS Specialist and they waited until you were diagnosed to get you support. I really needed the support before.
Yes our families can find us tedious when they do not understand our complaints are real.
It is definitely difficult to have symptoms that don't "show" and that others don't understand and can't relate to. I often will say something about a symptom or sensation I'm having, and people come up with things they've had in an effort to make it relate-able to them. I often have to laugh because it is nothing like what I'm experiencing! Years ago - I'd try to explain - now I just nod and smile. I know they won't understand no matter what I say, so I save my energy.
I honestly think its something that you have to get used to through experience. Advice helps - and especially knowing you're not alone - that helps I think, the most. But time and experience with it end up doing the most good. FRUSTRATING isn't it? We wait for a diagnosis. We wait for test results - we wait to get into specialists, etc., and then we have to wait to develop the patience to actually deal with the disease.
TOO MUCH WAITING for my taste! lol We'll make it - with God's grace, and the grace of those around us. Blessings, Jan
Now I get it Lulu :), I am for sure not bored, with everything I have to do and like doing. I just thought that boring meant that I am making the people around me bored, I thought it was a word to describe me. Well.. I am always learning :). Thank you Lulu.
Hi Jan and thank you for your comment. I am now at that point that you mentioned, that I do not have the patience to explain to folks around me when they say is it like this or that. It would be so much better when I know what I am dealing with. But yeah ofcourse we'll make it :).
I understand feeling like I bore people. You used the word correctly. I tend to minimize everything but I do have friends that want to know what is really going on- or why I can't do some things.
Try to explain I can't walk that far. They font understand because they can. Many are 15 to 20 years older then me Ans they don't understand. I feel I bore them when trying to explain. So yes you can feel thar you are boring.
What I try to do is ask about them. Focus on them. Gets me out of feeling like just a bunch of symptoms.
We all need to be heard and maybe even understood. Here is the place to find that I think. My friends will never really get it. Except maybe one who has something to base it on.
Sorry I went on a rant myself. Just want you to know you are not alone.
Raz thank you for your input, I can see that you get what I was trying to say. And yes I also always remember to ask people about themselves. But this here, is the best group ever to "talk" to. Because we can so often relate, and I feel nice to maybe be here also for other people to support.
Also sometimes people just do not know what to say or do. Sometimes they down play things because they feel bad. When I started having my bad attacks where I end up on the floor screaming I thought my husband did not really care because he would sort of ignore me. Then I heard him telling a friend how scared and helpless he feels. One time I was on the floor in such pain and he had his favorite rock band the WHO on TV. He turned up the sound and was into the music. The last time I had one at 2AM he held my hand which was really hard for him.
I have a good friend who tells me all these miracle cures. Last week it was I need to have a bar of soap under my mattress to stop the abdominal spasms. They usually happen during the day?
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