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Good Couple Of Months Symptom-wise...


lalalisa
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Hello!

The past few months have been a little bit better as far as symptoms go and I've had a bit more energy. (On a scale of 1-10 I'm usually a 3-4 and right now I'm a 4-5)

Here's the question.....do you shy away from telling people about your good "seasons". When I should just be enjoying this good "season" I'm actually fairly anxious about it. I fear telling certain people that I'm doing a bit better for fear that they think that I'm completely healed or something. Does this make sense to you guys?

Another reason I hesitate telling people is that I'm scared of a big crash.

Am I the only one who thinks like this? I only have a few friends who I feel like can ride this "roller coaster" of symptoms with me and who understand that I have good times and bad.

Thanks for any input....

Lisa

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I'm going through the same thing right now. Since starting Mestinon and PT in August, my health has improved considerably...I'm at a 4-5 most days, and a 2-3 on my bad days. I've been picky about who I tell. I've told most people that I'm doing a little better than normal, but a few of my friends and family know the ins and outs of my improvement. These are people who also know that at any minute I could go downhill, and understand that just because I get sick again, doesn't mean I won't get better again in the future.

It is SO difficult having a chornic condition like this, and I can definitely relate to your worries about crashing. I'm terrified that I'll catch a cold or something that will put me in bed for months. :)

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I know what you mean.. if you tell people you're feeling better they seem to think it means you're cured or something.

The only thing I usually do is say something to the effect of "It's a good day." I guess I haven't had a lengthy period of feeling well or much better, but if I tell someone it's a good day, then when it reverts back, I'm able to say it's not a good day, and they don't necessarily assume that every subsequent day will be great.

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I feel exactly the same way. It makes me really nervous to tell anyone i'm feeling good because i could be feeling bad again by the next day or even in a couple of hours. There are few people who understand that "i feel good" is a transitory thing to be treasured whenever you can get it. Sometimes i get so excited by small improvements that my joy conveys that i'm doing a lot better than i really am.

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Don't be like me! I alays make myself look like a dufus cos when I feel well I tell everyone, they think I'm better, then I do too much and crash and have to tell them WHY I'm in bed/unable to go out/move about/do stuff that's been arranged again :)

The other week when I rode my bike- I told everyone, even my tutors cos I was so pleased. 48 hours later I almost fractured my right arm--what was I meant to say then? I only told a few people about that one.

I worry when stuff like this happens that people will then- NO ONE could have a condition THAT erratic- she MUST be 'at it' :D

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I stick with the "fine" when people are asking me how I am. I only go into details for family or close friends.

That way, I've never said to them bad or good so there is really nothing to talk about.

If I feel inclined to share more, I might say I'm having a "bad" or "good" day. That's how I speak to doctors.

But, I'm agreeing with you. It depends on who you are talking to. Most people do not get the variableness of this ailment, neither do they understand it much to begin with, so I keep my responses simple.

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I'm also cautious about what I share. Some people seem to take every upswing as a sign that I'm "getting well", and others seem just as disappointed as I am when I go back down. For some reason, once I've told someone I'm doing better, I somehow feel like I've made a commitment to continue feeling better.

I think I probably shut out more people than I should. I try to protect even the people I'm closest to from disappointment, and that ends up isolating me. My close friends and family are perfectly capable of taking care of themselves, and if they've been watching me go through this for 10 years, and they STILL get carried away with each bit of good news, that's not really my responsibility, now, is it. :)

spike

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I'm up and down like a roller coaster now a days, I dare not tell my 15 year old if I wake up and feel I'm have a reasonable day , say at 6-7 pain instead of 8-9 . :D

Because he will go off to college all smiles, then on returning home can and does find me 'flat out again' and his face :) the look of disappointment is awful, I still feel he thinks I will one day be that full of energy , all singing all dancing crazy person he once knew when he was about 4-5 years old ........... :D

Well I'm still crazy just 'creaky , crotchety and crazy now ' :)

Willows.

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I've made the mistake of telling my husband I was feeling pretty well at the moment and then we decide to do something, like go visit his parents, and then on the way, I start feeling super sick again, and I don't have the heart to tell him how I'm feeling and I suffer it out while at his parents and end up really bad by the time we get back home and takes days to recover. It's so crazy how this is such a moment to moment illness, not day to day at all!

- Tammy

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Thanks for your responses - It's nice knowing I'm not the only one who feels this way.

Lisa

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I'm right with all of you. When I say I'm doing pretty good lately like I just told my dad yesterday, he thinks I'm cured. Well if he called today he would realize I'm slipping down the potshole again and just think I'm "selective" with this illness which is not in my personality at all.

I truly think alot of people feel I'm faking because it is so up and down. But the close people to me know I'm not lazy and how frustrated I get when I'm non functional.

Dayna

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So in agreement with what you all posted in response. When I do have the days, weeks of feeling good I want to believe myself that a miracle has happened and that I am cured. When I quit taking my 24 hr pain medication I did have energy for about 6 weeks and I was so happy. Then I got hit by the fatigue that was so bad I was confused and unable to stay awake. Was so disappointed that I cried. My husband was mad at me for being happy about the good days, "should have known that I would feel tired again" That makes it even harder. But, since I really can't determine the cause of the fatigue I will continue to do as much as I can on the good days and enjoy them to the fullest. Just wish there were more of them. Also, I dread getting a cold, virus - anything that can throw my body into the POTSHOLE again. Lately, I have started taking antihistamines daily, not just when I have obvious symptoms and I want to believe it has been the reason I have been functional.

Lori

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