Would really appreciate replies x
I think this is a good place to feel free to talk about it with others, people who know what you are going through too. My mom actually has MS too, so I was able to talk with her about it when I needed to, without that I'm not sure where I would have turned, but this site seems ideal for discussing it.
I never got into the details much with any friends either, just let them know what was happening and that was that really. It did not come up very often after they found out so I think what youre going through is normal. Its hard for people who don't know what MS is all about to understand really, so I never expect them to, you know.
Just try to live life as normal as you can I think, enjoy every day as much as you can.
There are times you have to come clean. Family and close friends have to know, because they see me on the bad days. In the sport studio I tell the guy, this is why I am not actually getting stronger, in fact I am pleased not to be getting weaker. He is very impressed by this! At times where everyone is working hard - this week is fest in our village and there is a great deal to do - you can say, "sorry, I have a stupid nerve disease and I can't do this for long, can't do the heavy stuff, have to go home early". Try not to say MS, say "encephalomyelitis disseminata, a rare condirion of the central nervous system". That is the truth but has no wheelchair attached.
If MS does not affect your work do not mention it there. Do not mention it in job interviews unless it is relevant (if you are a forklift truck driver then think about retraining!) As long as you can drive safely you can keep you licence (this does differ from one country to another).
I am glad you are being positive about this. I know MS people (and not just MS) who don't do anything else. It is their life's content, their constant excuse for not doing things, their reason for every failure. You just stay the way you are.
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The problem comes with the decision of weighing the unknown with the unknown.
First of all, you are going to know right away who is your friend and who isn't and that is probably the best thing about having MS, you learn so much about people!
When I was first diagnosed, I didn't tell anybody, even within my family, it was rarely spoken of. My attacks were pretty bad the first couple years and I didn't want to talk about it ever. I had a hard time moving away from that, during high school, it was like my dirty little secret, I think I told three people. It was horrible, I don't recommend that, I was very sad and bitter most of the time. Its funny how, at that age, it is so hard to be different because right once high school is over, being different makes you who you are- someone people are interested in knowing.
Once I got to college, it was a clean slate and I decided to embrace the fact that I have MS. My friends and roommates were incredibly accepting and it made a world of difference. I started to develop into the person I am and I'm sad I didn't realize how to do so earlier.
I'm still a private person and I don't just tell everyone in general conversation but if it comes up, I'm not afraid to speak up. The way I look at it is, its not a secret and its better than having people talk about it behind your back. It took me ten years to learn that though, I'm still careful who I tell and how I tell them without giving away too much. Over time, you'll learn what works best for you. How I usually bring it up when someone asks or I feel like it is time to share with them is like this, "I'm not sure if you are familiar with it but I have MS."
Anyway, good luck, hope it helps and sorry it is so long!
I am including a link to an article I wrote about MS on my blog, I wrote it for readers with little to no medical knowledge, my intentions were to give my family and friends something to read that they could understand so they would understand my disease and what I'm going through, maybe it will help you too since I wrote it in simplest of terms with simple examples that anyone should be able to grasp, good luck!!!
http://mattsms.blogspot.com/2010/09/so- ... rosis.html[/i]
Im new to this, have never done somthing like this before..
When i was 19 i was told i had a 50% chance i had MS, but they had to wait and see further down the line..
Now recently turned 23, it has been confirmed that i do.
I have only told my partner, apart of me is scared to tell anyone else, as i dont want people to look at me and think
"shes sick" or anything like that...
I look completly normal thou.
Was wondering if its just me who is thinking like this, about telling anyone ? Or is it just a natural thing?
Also does anybody else experience severe leg cramps ?
as for the leg cramps - ever had a serum magnesium test done? yours could be low, many folks with ms have lower magnesium levels, bottom of the normal range, while healthy people sit in the top end of the normal range.
anyway like i said welcome to the forum. glad you found us
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!