I'm a Positive Person But REALLY Sometimes it is HARD!

[loopey]

I have been reading the posts both positive and negative since finding this site. I have always had "rose colored glasses" but I lost them when I was DX. I appreciate that I can come here on my "bad" days because this is the place where people really understand.

I got a cold about 2 weeks ago. It was bad and I am not sure I am not in a flare because I got over the cold symptoms but I feel terrible every day. My husband is great, my sons are great, my life is great except for when I am sick every day for weeks at a time. I am always sick now but when it is worse than "normal" it is a very isolating and lonely place. No one can really relate except for those who have been there themselves.

I have lost my appetite (and 40 pounds). I love to eat but I can't stand it now. I can't sleep. I am dizzy every day etc, etc. But the worst part is the sick feeling that won't go away. It DOES strip joy from life despite the efforts I make to remind myself that it could be much, much worse. So, I am glad that I can say that here without someone telling me I would feel better if I just had a more positive attitude.

MS is a very lonely place to live. I admire and trust my doctor but there is so little he can do to help. I believe this bad time will pass but I will still have MS and it will still be terrible.

[Mamabug]

Sounds like one of those days when I wish I could move to Australia. Maybe you can find your rose-colored glasses there.

But, if you:

• feel terrible every day for two weeks
• lost your appetite
• lost 40 lbs
• can't sleep
• and suspect that you are in a flare,

you should go see your doctor. Perhaps a round of steroids would help you to get over this flare more quickly.

Sorry for the stuff you are going through. Yes; MS is hard.

[Kali]

I second the idea of going to your doctor. There should be something that (s)he can give you to help.

[loopey]

Thank You

Thank you both for your responses. I should have mentioned that I did go to the doctor and was checked very thoroughly for the weight loss and apparently it is a side effect of Aubagio. That also explains the feeling sick so much of the time.

I often wonder if I am in a flare and I think I just have to stop doing that. I just got over a cold and when I get a cold or the flu, I don't pop back to my usual MS self. Again, thanks for the response. I am doing better now.

[22cyclist]

Loopy, maybe aubagio is just not the DMT for you. When the treatment is worse than the disease it is time to reevaluate your choice. I always felt so ill on Rebif. Turns out I was in bone marrow failure. Be proactive and take your life back, there are other therapies to try.

Hope you feel. Better soon,
Lisa

[Mamabug]

It's been a few days since we heard from you Loopey. How are you doing now?

[loopey]

Thank You

Thank you for the follow up. I am starting to get over the wretched "sick" feeling and am feeling like it will pass. For me, when I can finally believe I won't feel so bad forever and I can see the light at the end of the tunnel then every day seems to get a little better.

[Mamabug]

Glad things are looking up, and, I love your positive attitude, even in the midst of "HARD".

[Thinkimjob]

Old joke. The light at the end of the tunnel is an oncoming freight train.

I'm fine with "congratulations on your positive attitude", and I entirely encourage it in the early years. However, 20 years on, to be honest, I kind of find it very hard to deal with, because I can be as positive as I like, but that doesn't change the fact I can't walk, can't much work and can't make the bathroom every time when needs must.

I don't think having a positive attitude makes any difference. It's time, and drugs and luck.

Also, having the SPMS forum more or less hidden down the bottom is depressing - it's as though if you progress you have somehow failed, and you must be shoved under the curtain. You're not too bad, well done you! You're buggered, you're a bit of an embarrassment.
I know no-one means that.

Anyhoo, it's been a long day, valiantly wheeling my wheelie walker around at work. School visit. Kiddies said, "Come on, you can walk without that". "Um no, I'm lucky to be able to walk with that," I said.

[Mamabug]

...

I don't think having a positive attitude makes any difference. It's time, and drugs and luck.

...

Having a positive attitude won't change your symptoms. However, IMO, it can change your outlook and your life.

[Kali]

A positive attitude may not change my life, but it will change my today

[palmtree]

I don't like"positive attitude" because it implies I should change what I am feeling. I don't like being sick so I'm straightforward about what it's like for me. Some of the most wonderful people I know have been very "bad patients".

When someone is helpful, however, I am kind and appreciative towards them.

[KatieAgain]

I don't like"positive attitude" because it implies I should change what I am feeling. I don't like being sick so I'm straightforward about what it's like for me. Some of the most wonderful people I know have been very "bad patients".

When someone is helpful, however, I am kind and appreciative towards them.

I agree. I read an article recently written by a doctor about a positive attitude. Here is one of the quotes from that article that he wrote to a friend with Cancer: “Take one day at a time while you fight this disease, and celebrate each completed day, for that is an accomplishment in itself. No one can tell you how you should feel. Anger, fear, disappointment, depression, insecurity are all part of the package, and we, as your friends and family, must expect you to be your authentic self. Lean on us when you need us. We’re not going anywhere!”

I know some wonderful bad patients too.

[Mamabug]

Yes. Although a positive attitude can change your outlook, your today, and your life, and, IMO, should be pursued, being authentic is important too. Some days are bad days, and it's OK to acknowledge that, as long as we don't wallow in it and choose to stay there longer than we need to.