Suggestions Coping With The Relapses And Remissions

[lissy]

I was house bound except doctor appointments for a year 1/2 .For the past 8 months I've had a few months inbetween of nothing but days of feeling recovery and normal self. I get use to the energy lack of symptoms and really start believing that this nightmare is over and out of no-where ITS BACK and so are the feelings of being scared ,worried, panic ,and depression along with the inability to think clearly. Its like I'm becoming 2 different people the sick me and the recovered me and its becoming exstausting.

I don't know how to balance it out and I don't know if I need to push myself to stay active or rest???

I was on a good roll 2 months about 80% of normal health "feeling" and I've been feeling terrible for almost a week straight now and this also happend about 6 months ago when I had a streak of 3 months good and after that I stayed symptomatic about 1 1/2 months into another good streak. I try to stay hopeful that it will pass soon but I never know ..... so I guess I'd like to know how many other experience this and how do you cope?

And if you do have the relapse how bad do you feel and does it ease up from laying down? Cause what I'm feeling has no relief...

Lissy

[Guest tearose]

I'm sorry you are in a POTS hole right now. I hope it is a small one.

You are not alone and I will try to explain my experience of remission, relapse and managing.

Remission in my opinion, is when I have at least 8 good hours of activity and the ability to do normal ADL's and a little normal house tidying on a daily basis: like do the dishes and make the bed. I also believe for me to be in remission I am able to keep doing this day after day after day. You know, just like "normal" people. I have had stretches of some near-remission but it never lasted. Even during my near remission, I have needed to nap, take a day off after three days of activity or I wind up at risk for a complete week or more of total body shut down. So, I think I should discuss management...

Managing...

I have NEVER returned to normal functioning and notice that I have become so use to making accommodations that I forget that "normal" people don't take the steps I do to get through a day.

Think of all you do to function. For me, it is being sure I have had enough sleep before I attempt getting up in the morning. Then I have to hydrate, avoid bright light, and get my bp up before I can even start to function. For me, I shower, compress and dress and all that takes 2-3 hours. There are times it can take less and in the cold of winter it can take me longer. I have to be sure I am carrying all I need in a potsbag that I keep in the car and water, a pad,electrolytes in my purse. I also have motility problems so if I do not have a "BM" before leaving the house I will be at risk for a bathroom emergency or worse, an accident in my pants. How many people do you know that have to be aware of their guts on a daily basis? For me, I have improved the quality of my life by accepting the accommodations and trying to live within my limits. I sometimes over do and then I need to pull back for a day or two and gain strength and balance. Management can mean rest and laying down a little or it can mean a little exercise. It can mean avoiding solid food and having only soft food and shakes. It depends on what ANS system you are dealing with. You will become better at management over time.

Relapse to me is when I have reached major imbalance of ANS functions and I am in survival mode. It is when I haven't slept well for days, or my intestines are blocked or my stomach is not digesting food for days in a row or I am feeling like a rag doll or I am having such high fast rates that my heart is starting to hurt. It is an extended stay in a deeper potshole. I like using a potshole as an image because it helps me realize that I am in a place to get strong and then to move up and out again. Sometimes in life potsholes are little and sometimes they are big. I try to learn what "streets" to avoid as well so if possible I can avoid a potshole.

I am praying a lot about acceptance these days. I have been fighting for so long to reach the "permanent remission state" and it only chips away at my self esteem. I understand how you want for better and so do we all. Keep thinking positively about what you are doing now. I wish for you to rest, to learn to accept your limits and celebrate whatever you can in life. You can only do your personal best and that is good enough!!!

I think I covered your questions. I am still not up to my functioning level yet so if I notice I missed something I will add it!

take care,

tearose

[potsgirl]

Lissy,

I really liked what Tearose wrote. She covered it pretty well. I only have very brief periods of remission, maybe a day here or there when I can do a couple of errands and maybe make it to a movie. That's definitely a 'long' day for me, and I'll have to rest for the next day or two to recover. I don't shower every day, probably 4-5 days a week, and do my hair twice a week. Then I just let it dry. It's making sure that you're saving your energy as much as possible, and not sweating the small stuff. It is certainly difficult not to get too discouraged, though.

I'm really sorry to hear that you're in a low period right now. I'll be in it with you. Together we can try to stay positive and hope for the best. There are so many difficult things about being in a down period, but I think one of the worst things is the isolation. I used to be so social, and going all the time with a job I loved, staying physically active, and now most of that is gone. We got a treadmill so I can at least walk on the days that I'm up for it, and the Forum and email is great, but it's not the same as getting out with your friends or making new ones.

I'm also going to start seeing a psychologist who deals with chronically ill people, and I think that will help my frustration and depression when it hits. Now if I can make it to the appointments!

Take care, and I'm thinking of you,

Jana

[lissy]

Thank u both for your repllies and this is the best place to come and I honestly feel understood ...I know I have to stay positive and when you have a family and have those UP times it feels like your letting them down during the down time , but I do know they understand... It makes me angry that we all have to experience this condition it use to feel like pity for myself and now I just get angry and I wanna fight harder against whatever this is I wish there was more knowledge , maybe on day there will be.

Since I have had weeks to months of this so called remission with only a few bad days in-between in these recent months just maybe I could have a long term remission. I just should be happy for that;)

I go back to Clev.Clinic in a few weeks to do the testing and having the DX of dysautonomia already maybe the picture will become alittle clearer. I don't know what I can get from the tests ??? Keeping fingers crossed

anyway thank u both again xxx

Lissy

[jem15]

Ha, liked the "potshole" reference. That's a good one, I'll have to use that:-)

As for the "remissions" I've never seemed to have that, I'm always symptomatic, and things have just gotten progressively worse for 15yrs, but I went from being able to have a half normal life and "push thru " and manage things while just feeling awful the whole time, to now being unable to push and out of work /unable to drive. I just go from times where I'm at my "normal baseline" for that year and then times when it's even worse. I'm still wondering if a spontaneous remission of sorts is possible cause I only recently got diagnosed, and wonder if it's possible to hit on the right treatment, though I havent found anything to work thus far, i'm still trying to stay hopeful.

I can understand how frustrating and scary it must be to get a glimpse of "healthy life" and then have it taken away again. Sometimes I find the worst part about this is all the unknown and that you just never know what your body will/wont be able to take. It not only emotionally messes with you but I'd think financial/security wise too, like w/me, if i suddenly felt better to work for a few months and then think i can hold down a job, only for that to leave once you get started, that'd have serious implications...

anyway, hang in there, though I dont have the remissions, i have days where things are just dreadful for no good reason, and that's always frustrating to cope with. I find my hope lessens on those days, but in general how I cope is I give myself some time to be angry, sad, etc about it..I just try not to get stuck there for long. then I just give myself a break and realize when I get that bad, I have to just do nothing and let my body rest, otherwise, for me it seems I cant get out of the "potshole". I'll just stay worse. It is tricky to know when to push, when to just rest. Ideally I try for a balance of both, and try to push, but not to the point where it knocks me out for days or week after, that's usually too much. If i push and can return to my baseline by the next day, then that's an ok push level for me. And my "push/rest" guidelines have changed from year to year. The same strategies that used to work, don't anymore. So for me it's been constantly learning and accepting that I have to adjust/adapt to the "new level of sickness" and trial/error for figuring out strategies.

[dianne.fraser]

Lissy

I can understand how confusing it is to sometimes be symptomatic and other times not; and to experience wild fluctuations in symptoms.

I thought I was cured a number of times after I discovered bedrest - spending at least two weeks mostly laying flat generally sends my symptoms to sleep. After each 'cure' I would start exercising again, and each time I would slip backwards. I also thought that I was cured after a doctor decided that I had a broad grain allergy - he took me off every grain except rice. I found that I became really drowsy after eating rice - when I eliminated it, my energy levels went up and I felt much better. Now I understand that I have a problem with carbohydrates - I can't optimise my functioning unless I limit my intake.

Now that I understand my illness better (it was much easier after I was diagnosed), I use bedrest, along with a lot of other approaches, to keep myself functional enough to stay at work.

For me, there are no remissions, just times when I'm managing my illness optimally. I now take two month-long periods of rest every year (right now I'm in week four of my 'winter' break from work) and, if my illness suddenly worsens at any time I deal with it by:

1. making sure I'm doing everything that I know soothes my illness: drinking every 3 hours through the day; limiting my carbs; getting enough salt; wearing my compression stockings; getting enough sleep and rest; not being on my feet for too long or standing stock-still for more than a couple of minutes; stopping my night sweats (with ibuprofen, when needed); managing my allergies; and avoiding things that aggravate my illness (eg exercise, flying, over-work).

2. stopping anything new I might be doing or eating in case its aggravating my illness: eg earlier this year I experienced weeks of unrelenting nausea that didn't ease with general management of my illness, so I eliminated the only thing I had recently introduced into my diet (quinoa, which I was eating for breakfast) - my nausea stopped within a couple of days and hasn't returned.

3. laying down until my illness comes back into balance.

I also have to watch my anaemia - my fatigue levels are so high it can be hard to tell when my iron levels are dropping, so I need to get my levels tested a couple of times a year. My anaemia doesn't resolve without bedrest, irrelevant of how much iron I take - it is generally a sign that I've done something to aggravate my illness.

Good luck and best wishes

Dianne

[nmorgen]

Hi,

I guess I'm like most of you. I have short periods(hours - few days) where I might feel normal. Surprisingly most of those times seem to be when we are on vacation. Maybe it's b/c I really try to ignore all of my symptoms and have a good time. Most days I find it a struggle to just do regular everyday housework. If I cook dinner and clean up the dishes I feel I have accomplished something, lol. I am hoping and praying I could have months where I actually felt normal. I like the potshole analogy also. I've been stuck in a potshle for the last month, arghh. I can't wait to climb out of it.

[MightyMouse]

the only thing I can share with you is that I always remind myself that this is a rollercoaster ride... and eventually (although I never know when, kind of like Disney's Space Mountain), it will chug bag up out of the gully.

[smiles]

Lissy,

I so can feel what you are going thru. I go to a support group and sometimes describe my struggles with the 'sick' me and the 'feeling better' me. I agree that in the last 7 months that there seems to be 2 different me's. I so enjoy the half functioning me. I live in the moment and thoroughly enjoy every day. I celebrate life. Then when my body crashes I am stuck in bed. There is such a major difference in my functioning levels that the vast difference is what makes it seem like there are 2 me's. Sometimes there is little inbetween times. Recently I'm either real bad or doing better. The extremes are frustrating. The swing is difficult to deal with. It's like I have to readjust everything when the swing happens. I'm on the upswing now and functioning better than I have in years. It is sooo nice. Then when I crash I almost fear the relapse because I have enjoyed and so desperately want the better health.

I really can relate to feeling like 2 different people with 2 different functioning levels and 2 different coping skills and 2 different levels of brain function. The brain function thing is so different. I believe that the difference in the way my brain works during these times affects my perception of my realities. My family also has to do different things when I can care for myself and my family verses when they have to take care of me. The difference in the way they have to treat me or care for me makes the swings in my health seem more like there is the 'sick' me and then the 'I can take care of myself and you' me. Don't know if it all that makes sense to any one but it has become my life.

I choose to take each day as it comes and what ever or who ever I am has to be ok with me to maintain my mental health. It's not easy but my attitude has to be believing that I have purpose in each stage of my life, however difficult it may be. It seems that each time I adjust to my health changes, then my health seems to change again. What a strange disease!

Hang in there and know you are not alone. I guess we make 4 people instead of 2, huh? LOL Oh well, such is life. God understands me even if I don't understand myself.

Lots of love, Smiles

[janiedelite]

I'd been noticing an increased tolerance for being upright lately, so much that I even am making an attempt to return to work after over 3 years. However, we've been so fortunate in our area for a real delay in onset of hot weather this summer. Now it's here, and even with our a/c's I'm having to lie down several times a day again.

Still, I can really relate to the previous post-ers when they say that they are so thankful for being able to figure out how to deal with their illness. Before being diagnosed, my BP fluctuated wildly with any position change and I was in bed except for an hour or two a day. My increase in function might be because my body is recovering, but it also could be that I've been SO diligent to make every attempt to take care of my body.

So today I'm choosing to stay at home and rest instead of accompanying our little girl to her swimming lessons (hubby is taking her without me). It's a warm day, and if I go then I'll be pretty sick afterward. I got up to feed her breakfast and dress her, but I can only handle a couple of hours out of bed lately before the chest pain, nausea, light sensitivity and achiness gets severe. And I'd like to be able to care for her later this morning when hubby needs to get back to doing his doctorate work.

I saw my PCP yesterday about trying to get back to work. She was supportive, but also cautioned me that I'll have to get a lot of medical clearance before any employer will allow me to do patient care as a nurse. She told me that it might not work out. That would be really dissappointing, but I'd be okay with that eventually. POTS has made me so appreciative of my close relationships, and it's those people who show me that I'm valued even if I can't do as much as most people. There's also a lot of "self talk" that reminds me to appreciate the little things in life, and faith in God who comforts me when I have to spend a lot of time alone.

[smiles]

Lissy,

After I posted last night I thought some more about how to describe how I feel when I swing from 2 dramatically different situations. The difference in my health is so dramatic in the 2 extremes: one is bed bound, unable to eat solids, unable to communicate effectively because of my speech, unable to do things with my kids, drugged up to stop major convulsive and autonomic muscle control issues, ect. The other is being up, walking around the house, going places in my W/C, eating regular foods, thinking clearly, having fun, laughing and normal speech.

When I feel better I try to forget how bad it was and try to enjoy the moment. The ?healthier? me tries to imagine that this state I?m in will stay and that this is my normal. The ?sick? me after a awhile seems to forget what it was like to function. The ?healthier? me tries to forget what it?s like to be the ?sick? me.

I?m very aware that in both extremes I am still just me, the same person, just in extremely different levels of functioning. Just as the seasons change, so do the seasons in our lives. Just as the seasons in our lives change, so do the seasons of our health.

Didn?t want anyone to think I really have 2 personalities. I am definitely the same person. So you are not alone.

I used to have more gradual changes. When I am really down for an extended period of time?like months at a time, I don?t feel like this. Or when my health is stable and somewhat functioning

[janiedelite]

When I feel better I try to forget how bad it was and try to enjoy the moment. The ?healthier? me tries to imagine that this state I?m in will stay and that this is my normal. The ?sick? me after a awhile seems to forget what it was like to function. The ?healthier? me tries to forget what it?s like to be the ?sick? me.

I?m very aware that in both extremes I am still just me, the same person, just in extremely different levels of functioning.

VERY nicely said, smiles. Thank you.

[smiles]

thanks, thankful, glad I'm not alone in my coping process.

[ramakentesh]

Ive had POTS since 2006 and ive experienced periods where i am totally disabled and periods where i am almost totally well, fearless and unhindered.

Over my cycles - four relapses, and large three year periods with minimal - but still present - symptoms Ive come to realise one point: I have NO control. I go along for the ride, I tell myself i do certain things that seem to help but in the next relapse they dont. I believe ONE thing improves POTS. Time.

Everytime I relapse I wonder whether Ill ever improve and I obsess about how I feel. Im almost hard-wired to my symptoms. For me its just part of POTS.

Most of what people accept about POTS - pooling etc has now been proven by newer research to be questionable.