[sweet tee]

how many of y'all feel totally fine on some days?
then really really really poorly on others?
I had a string of 3 days where my symptoms (more or less) disappeared, and I started to think that my rheumy was right, that it is all stress & nothing more. then yesterday & today the muscle pain is back, the weariness, night fevers (though mild), sleeplessness and my headaches have returned with a vengeance.
I know that stress and and lack of sleep can aggravate things, and even cause a few symptoms/diseases, but I've never heard of stress giving you a fever or a sun allergy.
but I know I'm getting more & more paranoid, feel like my GP isn't telling me everything (I already know the rheumy (ex-rheumy now) didn't tell me the whole truth), just generally confused.

any ideas?

 

[doris999]

I have days like that, does'nt happen often enough for me, but when it does it's heaven.
Stress is not good, but how can we avoid it if we don't know what's wrong with us. I know it is constantly on my mind, i want to know why i feel crap a the time.
Big hugs everyone.
Sand.

 

[Katharine]

Hello Sweet Tee,

Good days and bad days will be familiar to most people here. I have to say that my good days are pretty rare but I do get days where I feel more "human" and almost feel as if I might have energy for part of the day :lol:

It is very important to learn to pace yourself. Most of us are guilty of doing too much on the good days and then pay for it a little while after. Of course, pacing yourself will not eliminate the ups and downs but it can lessen the peaks and troughs and make it easier to deal with.

Feeling unsure of ourselves and of whether we are really ill or "just" stressed is also quite common. It is very hard when you have dealt with a string of dismissive or patronising docs to continue to believe in yourself. I found that taking a look back, although somewhat painful, was very useful. I could see that I used to do so many things. I was active and sporty and did far more than a full time job. I then looked at how I was today and the difference was very clear. At the end of the day, you know your body and you know that what is going on with you is not normal. Stress can be important and is indeed extremely harmful but it cannot and should not be used as a general "excuse" by doctors who are not willing to dig a little further. Sadly that is often the case.

Remember, if you can believe in yourself others will believe in you (and I do know how hard it is to do that when you are in a spiral of illness and feeling like the world has come to an end).

Hugs :grhug:

Katharine

 

[alimonkey]

This sounds exactly like the roller coaster that is my life! Yesterday I felt OK for the first time in ages. This morning I felt OK ish, but tonight I'm in agony again, and can barely move my neck and arms. I've been on this roller coaster for most of this year now - with a particularly dark patch just before diagnosis where I was in agony but my doctor's wouldn't prescribe anything as they didn't know what they were dealing with. The hardest part for me to deal with is the fatigue. Sometimes I'm just so tired I could literally sit and cry.

 

[lazylegs]

Lupus is like being a yoyo. You can be up, down, or on a sliding scale in between. The best way to shoot for the middle is to pace yourself as Katharine said.

Stress can aggravate things. However illness may also cause stress. Which came first no one can say. Docs do tend to side with stress though when they have no clue what is wrong.

Hope some rest will have you feeling better soon.

Take care,
Lazylegs

 

[sweet tee]

you guys do a great deal to help me feel better about this situation. after browsing around these message boards for a bit I realized that whatever my symptoms are, they're on the light side, early stages, whatever (don't know). even on my worst days I'm in not near as much pain as what gets described here.
thanks again
my heart goes out to you
I appreciate the perspective

 

[1tiredmama]

I also live an unpredictable life. Just sorting through all of this over the past few weeks, made me realize that I am really isolated by my condition. I never take the initiative to make plans with people because I don't know how I'll feel on any given day. So, I feel as though life is passing me by, and I'm alone.

On my good days, I clean and organize... like there is no tomorrow. I get irritated by interruptions such as my own hunger, a friendly phone call, my husband, even my kids. I even resent having to stop to eat dinner with the family--which is MY OWN RULE! : ) I keep going until I drop from exhaustion. I will even stay up late getting stuff done because I don't know when the next burst of energy will come.

I hate living this way. I feel like a failure ALL THE TIME. It's my little secret.

1tiredmama

 

[KarenM]

Hey Sweet Tee

Yes I was gifted with 2 very good days about 6 weeks ago, I really thought hey, the meds are working, and so early (diagnosed SLE/APS/PN April 09), and then I did the stupid thing of overdoing things, sprung cleaned my kitchen for example, and since then have not felt right.

Having read so many threads, so much information, I now of course know that in the main this condition is unpredictable, and that for me, I am finding very difficult to come to terms with.

1tiredmama, your thread, well I am so with you, though not deliberately isolating myself, friends have grown inpatient and have stopped calling me, even though I tried very hard not to drone on about how rotten I felt, during the last 18 months I have systematically watched 5 who I thought were best mates, essential cut and run, and this really really upset me. I know for my own stress levels, have to think were they really the friends I thought they were. My remaining 3 very close friends, are my lifeline, 2 however have medical issues themselves so better understand maybe.

Family are giving me hard time, especially on my side, they seem to think they know better than my doctors, and I am finding myself becoming increasingly irritated by them, these are the same family members who doubted there was anything wrong, now they seem to think now there actually is, they can dictate how I should be living my life and what drugs I should be on, very tiring and stressful, and how I just wish I could let them have an hour of my day, at my worst, then they would perhaps lay off.

I have had to set myself daily tasks, if I manage one or two, I feel a sense of achievement, I resolutely refuse to be side tracked from what I am doing, for me it is important to have structure to my day, and like you 1tM I feel furious inside if anyone has me deviate from that structure, for myself I know this is about having something I can control, I am keeping a very close watch on myself with this, I dont want to sort of become obsessive.

As I said in one of my earlier posts for me it is all about mourning the loss of the person I once was, and somehow getting used to this new person, and by golly its tough, but I know I will eventually get there.

One day at a time for me, and try very hard to acknowledge with glee what I can achieve daily, as opposed to what I cannot.