For Those Of You That Are Functional-- Do You Ever Get Tired Of Being Told That You Are Too Functional For Help?

[Elfie]

By the time I was diagnosed and actually recieved any treatment, I'd been living with POTS and NCS for 3 years. Then the first real "wave" of treatment took almost a year to work out something somewhat effective.

Four years is a long time to just have your life stop, especially as a young single adult without a spouse or parental support system. Especially undiagnosed, I felt like I had to keep going until I absolutely couldn't. Yes, I made myself pretty ill, but over time I developed compensation tools and eliminated parts of my life that I couldn't compensate for. There have been some areas of my life that I just kept going in, until something had to give and I couldn't go anymore.

School for me was one of those things, but I finally hit the wall 5 credits short of finishing. I spent 8 months trying to get those last few things taken care of-- I graduated with a half finished thesis and a small waiver because someone took pity on me. All I got from my doc was a congrats and to ignore my signifgant complaints of fatigue and brain fog; and from family, some criticism at how ridiculousy long it took me.

I sometimes feel more alone than when I wasn't diagnosed. All doctors, friends, family and even other dysautonomia patients see is the "fuctional" person and never all the things I've had to suffer through and give up so everyone else can see the "functional" person.

I guess I kind of expected that I wasn't going to have to do this forever-- because it isn't sustainable. I thought I'd have some help and understanding (from family, friends) or treatment that would allow me to recover some of my life.

Instead it is always hemming and hawing about further treatments, ignoring my complaints, not being understanding about how I can go work out (seated or in the pool) but it kills me to clean the house, upset because I can't find a job, not getting why I can't go to work and then go out, and even why being able to stand for x-amount of time isn't really a blessing if your brain doesn't work while standing.

Anyone else ever feel like this? Where do you go from here?

Maybe I am just throwing myself a pity party . . .

[jackiemxoxo]

Hello, to me it sounds as though you are lacking a strong support system more than anything. I can only imagine how hard it would have been to deal with this illness alone and even with support it can be frustrating. I think lately I have been pretty functional and I take the good with the bad. I might sometimes push myself more than I should but I do not want to miss out on everything going on around me. The most frustrating part for me is never feeling as good as I did before I got sick but I am thankful that I am not as sick as I was.

I think you just have to take it day by day and not compare yourself to healthy people that are capable of doing a lot more. I always tell myself it could always be worse and I want to keep pursuing my dreams in life even if they are going to take longer because I am sick. The treatments for me seem to have side effects that make me feel worse then no treatment. I still go to a doctor every 6 months to find out my progress and he is still pursuing a cause but other than that I just try to live life and not get too stressed out because it makes every symptom worse. When I am having a rough day, I think about my hardest moment in the hospital and then I don't feel so bad anymore. Hopefully you find more supportive people around you and keep your head up!

[rubytuesday]

I push myself too (and sometimes suffered the consequences--but I'm obstinant like that and hate the thought of being dependent). With just me and DH for the most part, I have to keep functional if he needs me and for myself (he travels for job). On the other hand--I understand how the POTS is like either something pushing you down or sucking you up (like a vacuum). I didn't know what was happening to me over the course of the spring, summer and fall til I saw the cardiac specialist in dysautonomia. I started with 2 mos. of treadmil in aquaciser at therapy and now do 25 min. day on stationary recumbent bike (was biking before POTS but not safe for me with fainting and legs are too weak for the hills now). But I am moving. I have to for the fibromyalgia and the arthritis. That being said, I was shocked when my immunologist threw out 'failure to thrive' because I'd lost weight (after 2 mos of treadmil in aquaciser and puking guts out/diarrhea for mon. on the Mestinon before cardiac specialist returned my call to tell me to stop the Mestinon). I clean our big house (on good day), go out to eat and meet with friends, to to church, participate in church volunteer activities (although I had to give up working the polls on election day). I am able to make bed/do laundry/fix easy meal if planned out and done in stages. I drive myself to local appointments and go to pharmacy (DH likes to do the grocery shopping thankfully). I sit with g-children (unless it the baby and am having iffy day and DH is not in close proximity). And I dog sit from time to time. I don't use assistive devices--yet failure to thrive--really?? (I think she was totally oblivious to what was going on with POTS).

Support systems are imperative. DH tried to stop his Cymbalta cold turkey (which both pharmacist and myself told him could kill him). He wouldn't pay the deductible and co-pay that increased this year. He had terrible headache and his high blood pressure was higher. I kept telling him to see his doctor it was from stopping his Cymbalta (but was like talking to wall). He was on road on his way home and I'd mentioned to him the toilet he'd worked on I found still running a little after DS had been in there earlier in the day. I thought I would tell him while fresh in my mind as memory is not so good. He started to tell me how to fix it but then blurted out how I couldn't do anything--he had to do it all. When I mentioned all the stuff that I do--he says, it's all things for you. (The house/laundry/houseworking is keeping up with 4/sometimes 5 people here). The pharmacy may be for him or for both of us or for me. He was upset because he had to go pay insurance bill due (closed that weekend and he'd forgotten to do it Fri) but the thing is the ins. co. is right beside where he works--he looks at that as 'me not doing for us' when I look at it as stupid to make unnecessary trip across town to go right beside a place he passes right next to his work. I told him I was glad he shared that I was being a burden to him (I know it was the withdrawal from the Cymbalta). He saw his PCP the day he got home/got started on something and never said anything more about it. He was my 'rock' as I am his rock when he needs me. When your greatest source of support blurts out something like this--well, it's like a punch in the gut. He never got the POTS until he was with me one day when I had a faint (all episodes before then were alone/once with DGS). DS never got it til he'd witnessed faint (and still don't think he really gets it since I'm dog sitting after his dog's surgery tomorrow--but have to be careful with bending/lifting and it's supposed to be freezing/snow--will have to take dog out and I have vocal cord dysfunction and asthma with cold air being triggers. Dog probably won't want to 'go' being not so familiar ground/will hurt him when he goes, and being short haired/getting feet wet when he's house dog is not his favorite thing.

That's what is great about the wonderful sites like this where there are resources and super nice people who share your experiences and give good tips. I take each day as a gift and one day at a time. I always think of those much worse than me and feel blessed.

Keep your chin up!

[ramakentesh]

Its very annoying actually.

the second POTS specialist I saw I walked in and he was sitting there with his arms on over his head all bravado. He said to me: 'Look your functioning, youve got a job. What's your problem? At least your not one of the crazy ones!.'

I told him that although I had a job at that time I was at risk of losing it because I was dizzy all day long. He told me to exercise more and that was the end of the appointment...

[jangle]

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[Elfie]

I appreciate the replies.

I think I get frustrated because all doctors and family members/friends see is what I am doing. I feel very lucky to be able to do what I can do, but at the same time I can either a) work a job in an "ideal" type setting (the kind with very little standing, a very cool work environment, low stress, and little brain power required), go to school, or c) kind of keep a house.

When I was working full time and living alone or going to school and living alone I was barely meeting my class or job requirements (constantly a couple of classes/assignments from dropping out or bad days from loosing my job) and coming home and going to bed. I wasn't cooking, cleaning my house (it often went 6 months between vacumings), was buying groceries in 15 minute bursts, and wasn't going out anywhere. I went almost a year without ever going out to dinner (unless you count going through the drive up after work), shopping, or anywhere else. It doesn't seem to matter that I was sometimes vomiting several times a day at work and having to lay down or squat to avoid passing out.

Now that I can't find another position where the conditions are ideal enough where I am able to work, I am spending almost all my time doing laundry/dishes/cooking/dog duties/heating the house (I am living with family members and not currently paying rent-- so I am doing 3-4 ppls laundry, dishes twice a day, ect) and recovering from those activities. I still can't clean the house (vaccumning and scrubbing) or do the shopping. Without a full time work or school schedule I sometimes have the energy to go out to dinner or coffee once a week. There are times I don't leave the house for a month. All I hear about is what I'm not and should be doing.

Still, because I've managed to mostly stay working or in school, can still drive, and because I do well on stress tests/exercise (if I could hike at all times, I'd be golden) I keep getting told that I am too functional to worry about trying more treatments, for using assistive devices or programs and tend to recieve nothing but judgement and confusion from family and friends. It was a huge fight with my doctors to get a handicapped parking permit when I was a full time student--- my cardiologist actually suggested that I sit down in parking lots if I got too dizzy/had syncope or presyncope. I had to break a mirror on someone else's car by falling against it trying to get out of the path of cars in a parking lot before syncope took over to get the point across that I didn't feel safe.

I worked for an organization that did work for museums. I've never been to most of the museums that I worked with/for because I can't stand long enough to see more than a small section or two. A senior class I had to take to finish my degree required touring of a museum and in-depth analysis. Even constantly moving I couldn't get through it--- eventually I had to pay/bribe someone to go through and take pictures of all the information and exhibits so I could actually look at them. I'm not an idiot and can clearly see ways that I could have toured the museums, but would have either had to have the support of family and friends, better treatment, or a more understanding doctor.

There are so many things that I enjoy doing that I can no longer do because I don't have a medical team that thinks my abilitiy to do more than make a living (which is currently compromised) and exercise/sleep is important, and don't have a family or friend support system that is willing to be inconvenienced.

Now it really does sound like a pity party! LOL-- still, what can you do?

[we_don't_look_sick]

Your comment "I guess I kind of expected that I wasn't going to have to do this forever-- because it isn't sustainable. I thought I'd have some help and understanding (from family, friends) or treatment that would allow me to recover some of my life." sums up what I was feeling!

I thought something would change, my life would improve. Your experiences shopping & cleaning are mirror images of my life. I work, but the job is in danger. When I come home from work, most of the time I am too exhausted to eat anything, much less cook anything.

Jangle, you are correct; we are alone in this and must research this ourselves. I have considered posting an ad looking for a Dr. who has dysautonomia himself/herself to have a Dr with understanding of the simple things day to day that profoundly affect our excistence.

Ramakentesh I can see the Dr. saying that. I bet He brought his hands down, turned away and began writing in your chart, said 'excercise more' without looking back up.

Our only hope in a Dr is finding Dr who suffer from dysautonomia. Suffer from it enough to nessisitate dropping thier hours to deal with their illness.

I have tried NADH and Ribose (stuff each cell uses to make energy). I will try another round of this and report how it works for me.