Flare?

[BeforeTheMorning]

I'm in what I guess must be a 'flare' at the moment. I had been doing better with diet changes and medication, but now I feel like I've got back to square one and worse. Now it's like I'm SO dizzy when I get up I can barely hold out long enough to grab something to eat in the morning before I crash down on the couch. The breathlessness and fatigue have got far worse than they were and the nausea and abdominal pain is making it really hard for me to eat and to drink nearly enough fluids.

Also I'm finding it hard to keep up exercise when I'm feeling so bad. What do you guys do about getting exercise when you're feeling really bad. My doctor told me to exercise everyday, but I just feel so awful at the moment I can't really go out. I'm thinking of getting a folding treadmill or something just so that I can keep up with exercise.

What tips do you guys have for when you're in a flare? Like, how do you make sure you stay hydrated when you're nauseous, what can help with the nausea, in fact what can help with anything?

And if you feel up to doing anything during the day what kind of things do you do to keep yourselves occupied, when you're too tired to really do anything? If that makes sense!

Many Thanks for any help,

Lyla

[corina]

Sorry to hear you're in a flare Lyla. It may sound strange but for me drinking coffee helps with nausea, I drink it black. Eating raw carrots helps as well, don't ask me why

At the moment I'm injecting extra octreotide to be able to go to the gym, there's no other way I can make it. I'm thinking of using the Wii on days I can't go out, at least that keeps me exercizing in a safe environment!

[Chaos]

When I'm really bad, my exercise consists of making sure I don't stay in bed all day. It's making sure I get up and move about the house a bit, sit in a chair, take a shower and get dressed. Those are all very energy demanding when you're ill. As long as I'm doing those things I'm not going to be "deconditioned" to a point of it causing me symptoms.

After the many years of being ill, I've finally come to realize I actually DO have to listen to my body and try to respect what it's trying to tell me. I ignored it for the first many years of illness and tried to keep up the exercise despite being very symptomatic doing so. I think I made myself much worse doing that.

[writerlymom]

I wondered about this too- I have been on the downslide since late May and it's reached a point where I'm kind of freaked out. There has been huge stress this spring and I had been pushing myself hard, plus we've had spells of hot weather and the kids are finishing school so the routines are off. Paranoid about not doing enough and getting completely deconditioned again - not that I was anywhere close to "conditioned." Any tips welcome!

Chaos, when you're in a flare how long does it typically last? And your previous bad spells- were they long? This one has been the longest I've had since when I was sickest last spring and summer.

[looneymom]

Could you have virus of some sort? This can send you into flare and so can stress. I always thought that Tyler was having flares in the beginning and I think some of them were that. However, when he had a virus or infection it made POTS much worse. If his routine was off that made POTS symptoms worse. Sometimes it' hard to know what causes a flare. When it comes to exercise, I would suggest setting a time limit. When Tyler was able to exercise and he was having a bad day, he would cut back. For him it did more harm if he did not back off the exercise level.

[Becia]

I can go into a flare with something as simple as getting out of the house more than expected. I've had bronchitis twice this year, and both times have sent me into a severe enough flare that I ended up in the hospital. Every sniffle I end up having sends me and the household into a tizzy, because no matter how early we start antibiotics, it can down me so easily.

I'm coming out of a flare now from a couple weeks ago when I was only home one day from doctors appointments, getting my port line placed, and major sensitivity overdrive. At physical therapy, they gave me some therapy bands that are different strengths that I can use even when laying down to work on my strength and mobility. I also do simple leg lifts and the such. When it's bad, even doing those can jet my heart rate to 150 and higher, but I do my best to grin and bear it as I can, and at least stretching my legs always makes me feel a bit better.

[writerlymom]

I upped the midodrine this morning and it seemed to help ... I think one factor in all this is the anxiety/fear of a major relapse. That's not all of it - a crash is a crash - but I'm sure it doesn't help when you're already having wacky stuff going on with adrenaline and nerve function. Really grateful there is support on this site, people who understand it.