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Forming Realistic Performance Expectations


April Love
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I am out on STD and have been for almost 6 mos. This is the 4th time in 5 years. My primary and neuro, have tried everything. Usual story, but treatments don't work for me. So here's the problem...

How do I set expectations like a daily routine when my fatigue and illness vary from day to day? (Oneday I'm fatigued, the next I'm ill!) Do you all have performance expectations for yourself, like sticking to a schedule? Is it possible to maintain a routine with this illness? If so, how?

Also, I keep trying to go back to work and keep leaving on a stretcher. This past year my doctor knocked on my head, literally, as if it were made of wood wondering if I was ready to admit I was sick. I just want to be realistic. I can't wash my own hair. (Maybe that's a little too real!) I have problems sleeping and problems waking up!!! I'm just looking for advice on achieving balance. How do I make realistic performance expectations for myself when basic functions of living are so hard?

Will I have a better idea after I go to Vanderbilt, or is it unrealistic to expect knowledge of my limitations from participating in a research study. I didn't see from those of you that had posted in the past that you walked away saying things like, "It's official, my days of riding roller coasters are over!" (I live in Orlando, that type of knowledge is important!) Although, I haven't been able to do things like that since I got sick, no one came out and told me what I can and can't do so I've been learning the very hard way. Combine that with the fact that I am a blind optomist and this is not fun to watch! I wind up being the fighter that everyone is screaming "Just stay down!" at because I don't know my limitations. I need a realistic idea of performance expectations while I am sick. I also need to know what the best case, yet realistic, scenario is if a treatment works. When you all talk about treatments working, does that mean it can fix you or does that mean it just reduces symptoms? i.e. a beta blocker gives me time to know a faint is coming, but it doesn't stop them.

I know it varies from person to person, but a guideline would help.

I wish someone had told me

1) Don't wear a short skirt once your diagnosed with syncope! I learned that one with a blush!!!

2) Don't shower at home alone by yourself unless your seated!

3) I wish before I had bought a new truck someone had told me, I was going to have

to give up driving!

Any answers or advice would be greatly appreciated as always!

Thanks!

April Love

POTS, OI, NCS

Meds: Beta blocker, stuff to make me sleep, stuff to keep me from being dizzy, and Midodrine (can't remember all the names and spellings right now!

Meds/Treatments that didn't work: Florinef, Salt Tabs, different beta blockers, pill for hormone regulations, support hose and exercise.

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Hi April,

There is NO WAY I could ever stick to a schedule while having POTS. I feel different day to day. Some days I am up early moving around and there are other days I am up early, but can't get out of bed.

Jacquie

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This is a really universal question for us, I think. You identified the variability of the symptoms as the biggest problem, and you are right. I think the key is setting goals, but having flexible expectations of yourself.

Like for instance, when I first got diagnosed, I was planning on defending my masters thesis and graduating within a couple months. Well, that goal still stands a year later, and I've kept working toward it, but I've discovered it's not going to be nearly as easy to complete as I had once thought.

Learning to live with POTS seems to be a series of rude-awakenings and realizations at first. It's, ohhhhh my, i can't do that anymore...or ok, this used to be a breeze and now it's quite an accomplishment.

I think it's important to always accept where you are physically, but to not give up trying to get better...also to not give up pressing your boundaries in small ways.

I wish I knew that there would be days where my biggest accomplishment would be getting out of bed and washing my face.

I wish i knew that the medicines don't fix you

I wish i knew that side effects of medicines can keep you as incapacitated as POTS itself.

Then again, it doesn't hurt to be optimistic and keep hope alive. If we had known all the limitations up front, it might have been tougher to face the diagnosis.

This is a good question. I'll enjoy reading the responses of others.

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Hi,

Here is a list of different triggers, things to avoid:

http://www.dinet.org/what_to_avoid.htm

Personally I don't have any expectations for a day. I get up in the morning and hope to make it through without fainting. My life at the moment is going to doctors and watching TV.

All the people I hang around with (doctors, therapists, friends) know that my body is not reliable and I can cancel an appointment at any time because I have fainted. Theyaccept it or I replace them.

I have learned my limitations the hard way. As a matter of fact, I am still testing them!

I am sorry but our disorder is not well known enough yet to give you a clear cut answer to your question on limitations and prognosis.

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I'm not sure if I understand your question. How do I set expectations for myself? Well, if one thing this illness has taught me is to expect the unexpected. To do what I can when I am feeling okay- but to not over do things. To accept that when I can't- I can't. So, I guess my greatest "realistic" expectation for myself is to realize my limitations and understand I may never have two days exactly alike again (healthwise).

Now, I'm not saying I give up or don't push myself to try and do more and more. But, it has been a hard realization that I just cannot do everything I want to do. I have to pick and choose. Is my house spotless? No.

Do I always look like a million bucks? No. I have such limited energy and "upright" (seriously) time I don't waste time by stressing myself out about what I cannot do. I do what I can. I actually, get a lot done all things considered.

So, I guess what all this goes back to is that accepting this illness, for me , has eliminated the need for any stringent expectations on myself. I do have checklists of things that "must" be taken care of everyday but those lists are short and only have things on them that are going to add to my life. So in picking and choosing, I've cut out a lot of "junk" and extraneous stressors that really don't matter any way.

Hang in there- time will make things clearer for you.

Carmen

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What you have said is exactly why I consider myself unemployable, and that is:

I am not reliable. I cannot be depended upon from one day to the next. I may have a good day and then have a bad day.

I always push myself and I expect very basic things from myself:

For example. Mondays and Fridays are hair-washing/curling days.

Sunday morning/night - church

Every day I try to do a stomach exercise on the floor and also add some weights.

I also make myself stick to a routine when it comes to taking care of my house. Only a fever keeps me from my appointed tasks.

Having said that, my expectation is to have no expectations - other than the ones I have appointed for myself.

My other expectation is to accept what is, while never giving up hope of finding a way to improve.

We all have our demons to fight with. You are not alone with this. Hang in there.

If I can be of any help or you have any other questions, ask away!

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This is an issue we all struggle with.

Try to be optomistic about your experience at Vanderbilt; they may indeed be able to come up with a treatment plan that will HELP you. Try NOT expect to walk out "fixed" or with a miracle cure.

I think you may find yourself disappointed if you think you will walk out of there having figured it all out. You will learn things about yourself and hopefully you will have increadible support while you are there.

I think you have to find a way to hold on to hope and yet still be realistic with yourself on a day-to-day basis. I do try to set goals for myself for each day; they may seem very small to other people (it may be that my only goal for a day is to empty the dishwasher or wash and fold one load of clothes); if I'm having a "good day" I may do more if I'm having a bad day I try to take care of myself and not stress about "messing up my plans". If I know I have something coming up that I need to prepare in some way for then I try to prepare days ahead (if possible) so that I have a better chance of actually being able to complete the tasks needed. When it comes to exercise I tried to do it at the same time every day and got frustrated with myself. Now, I set a goal of how many days per week I get the exercise (instead of which days and exactly what time). You really have to get okay with being extremely flexible and very unpredictable and appreciate what you can do and try not to beat yourself up over what you can't . (It's not easy...it's taken me two solid years to really just recently getting to this point).

I know some people have gotten better and are able to work. So far, that hasn't been the case for me. I struggle like you do with having no consistency and not being reliable enough for an employer to want to hire me. Not to mention I can't drive and have no access to public transportation to get a job anyway and I can't even handle getting up, showered and dressed everyday so I know I could not work at this point.

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It's amazing how powerful the wisdom of others can be. That's what I love about this site. You think for a minute you are the only one and then you learn that you are normal given your abnormal circumstances. I can handle knowing that I won't know what to expect, as long as that's what I'm expecting. Thank you all soooo much! You have no idea how validating your responses were and how I look forward to implementing the suggestions. This illness is like the story of when Jacob wrestled the Angel and said "Bless Me" and the angel did, but in the process he broke Jacob's hip to remind him everytime he limped how blessed he was. It's like the more you limp along with this illness the more you appreciate the fact that your able to limp. If you try to run too fast, you'll be down, but if you don't try to limp, you'll be down as well. So you limp the best you can. I can do that!!! Thank you!

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What baffled me about this illness is:

The harder you try, the worse you feel.

You know all you POTS people are tenacious! We all have to learn the hard way. It doesn't sit well with us to have to rest and pace and be cautious.

A lot of us have that pattern of one day up the next day down, and depending on how taxing the day up was, it might be several days or a week down.

One thread last month talked about getting used to doing things differently. http://dinet.ipbhost.com/index.php?showtop...9&hl=recovering

Although, I haven't been able to do things like that since I got sick, no one came out and told me what I can and can't do so I've been learning the very hard way. Combine that with the fact that I am a blind optomist and this is not fun to watch! I wind up being the fighter that everyone is screaming "Just stay down!" at because I don't know my limitations.

Blind optimism can start to look like denial if you can?t take 'no' for an answer! :lol: But, many of us are like that. I have to get knocked down over and over, before I'm ready to . . . find a side route. (As you can see, even then I don't accept no, I just look for another way.) Maybe the fight keeps us going. Remember, the others that are screaming at you don't know what you can do, either. We don't lay down and deteriorate and die, we keep attempting as much as we can and stopping short of aggravating things. This is trial and error.

We have to be sensitive to how much trouble we cause for others.

If you are looking for a doctor/book/post to explain what you can and can't do, that probably is unrealistic. Every one is different, our bodies respond differently everyday depending on how much sleep we got (a biggie!), what we ate, the barometric pressure, how stressful that day is becoming, and there is always the unexpected: letters in the mail, phone calls, sudden haywire reactions to meds, family and friends having stressful events. It sounds like you are understanding that you are very limited, the past is the past, and you are adjusting to a new you. That's good!

A lot of us have lost the ability to work mainly because of our unreliability and the brittle nature of our symptoms. You need to look into LTD at your company. The will likely require that you apply for SSDI, which can be a long process. I recommend a lawyer for anyone applying, major cities will usually have SSDI specialist lawyers. Generally, they do not charge you, but will only take a good portion of your back pay (this makes them fight for you.) They won't take you if they think you don't have a case, which you do. If you get declined they may charge you for medical records fees, but will work with you on paying this back, perhaps a couple hundred dollars.

Thank you for posting this for all of our newcomers!

1) Don't wear a short skirt once your diagnosed with syncope! I learned that one with a blush!!!

You crack me up! Tho' I'm sure it wasn't funny at the time. I was in a dress the first time I fainted at age 9, and was carried out of the building by a man who allowed my dress to hang open under his arms letting the entire church see my everything. :blush: That bothered me for a long time! (As did the back of my head that I whacked on the pew. Wasn't too fond of the smelling salts, either.)

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