This Is MS Multiple Sclerosis Knowledge & Support Community

Dear all,

I started my anti-biotic regime just under two weeks ago. As Sarah suggests, its probably best to let some time pass before describing any changes. My changes to date have been mainly psychological - I feel better because I'm doing something. As I've mentioned before my neurologist (I live in the UK) told me there was nothing he could do until I had experienced a second attack. My 'thick' head has disappeared.

I will post an update in 3-4 months time.

On a different theme - how do people cope with this disease? I can't think of any other disease that can affect so much of the body (and brain). I can't think of one area of my life that has not been affected dreadfully by this disease. My wife keeps telling me that I've got two lovely children (very young), but I am unlikely to be able to fulfill all the dreams that I had when we had them. The wretched EDSS table sends shivers down my spine - did a human draw this up or a computer? Too many of you are too cheery for my liking - how do you do it?

Oh Bromley

Don't look at what you may not have in a decades time. Look at what you have and will continue to have. You will get to enjoy your children growing up. You will love them and they will love you.

It may be that you won't be able to play football with them but there are so many things that you will be able to do. I have been diagnosed for 5 years and whilst I don't have children of my own I still enjoy playing with the children of friends and relatives. One in particular knows that there is something wrong with me, but just shrugs it off as one of those things. We even joke about it together.

This illness is not a death sentence and it will not end your life. If you stand up and fight it (as you are starting to do) you will find that there is life with MS and it tastes just as sweet.

But for now, be strong for your wife and your children. They need you, and you need them. This illness will only get on top of you if you let it.

And if times are tough, there are friends here that know exactly what you are going through and will always take time to help.


Robin

p.s. If you want to discuss this more privately you can always PM me

bromley,

I totally agree with Robin. It's hard for a while to get an emotional handle on the diagnosis of MS, but truly...........there is nothing that says you won't have a long and happy and fun-filled life!

I've had a central nervous system disease all my life. That didn't stop me one bit!! Had three children (and now have five grandchildren), did LOTS of physical activities (that were within my particular stamina and range at the time, including water and snow skiing for example), and Robin is correct. Kids don't care. They just want to spend "time" with you. They appreciate attention and love of any kind. They certainly aren't hard to please and are the best humans alive when it comes to understanding.

I don't want to get mushy, but truly, it is a conscious decision to either let this take YOU over or you take control of IT.

Those of us who appear so "cheerful" face all of the same doubts and fears you do. But if anything I'm saying helps at all, I can tell you from experience that just like Robin said, there IS a full and fun-filled life even with this crummy disease.

I know..........I did it, and am still doing it.

Don't focus on the "what ifs" or the "can't do it" part at all. Most anything and everything (activity or otherwise) can be modified enough so your experiences don't have to change a bit. Flexibility and adaptability are key. And laughter can sometimes be the best medicine.

Hugs,

Deb

EDIT: Oh, and bromley? Create new dreams. I know....easier said than done, but that's the beauty of dreams and goals. They can be (and often are anyway) changed for the better as life goes along.

Raven / Odd Duck,

Thanks for your support. The family stuff is the most difficult to deal with. Also, as a sports fanatic (runner / scuba diver) it's very hard to let things go at a relatively young age. I feel like I'm in the 'Truman Show'. Every time I open the bedroom curtains a jogger runs by. I often call out - how much are they paying you to do this?

Since being diagnosed I have also had a strange experience with deja vu. Almost everyday, I do something or go into a situation and feel I've seen this before / done this before. Maybe I'm just going mad!

Bromley

Hi, bromley!

I'm not sure, but my educated guess would be that the deja vu stuff is probably just a result of your "heightened awareness" now of things around you since your diagnosis. You might notice yourself getting more "gut feelings" about things sometimes, too. A lot of visionary businessmen experience the same things you are describing, and that's what they use to their advantage in being successful. So, if utilized and harnessed a bit, those "feelings" might be a gift!

I get the deja vu feelings a lot. Always have. But I never really connected it directly with a health condition or MS at all. I think it's something else altogether.

No.....You're not going mad. Rest assured on that.

Robin should be around in a bit and should be able to chat with you, if you like, regarding the sports limitations that you feel you now face. If I'm not mistaken, I believe Robin has had to deal with that sort of issue, also, as he was/is a highly physically active person. Feel free (as he suggested) to PM him, also.

Deb

EDIT: Bromley..........are you on an AED at all? (i.e. anti-epileptic medication) If not, and the deja vu feelings are bugging you too much, you may consider speaking to your doctor about it. An AED can sometimes (or you could even say most likely will) help to calm that sort of activity in the temporal lobe (from what I understand).

Hi Bromley,

Deb is correct, I used to be very active. I have skis and boots and a full set of scuba gear in the attic, waiting for the day when I can use them again. I choose to believe that MS will be cured at some point. To paraphrase Arron I wait for the day when I can sit down with my friends and say 'Remember when I used to have MS'. Until that day I keep my life as together as I can so that when it comes, I can pick up as close to where I left off as possible.

I suggest that you sit down with your GP and explain your fears and worries to him / her. Your GP is best placed to advise how to get over this. I can remember nearly breaking down in tears in front of mine shortly after my diagnosis. He was very supportive and subsequent to that we have become friends.

Whatever you decide we're here for you.

Robin