Define "functional"

[Altruism]

My doctor thinks I can get functional again. She keeps saying I'm doing so bad right now that technically it can't get much worse and should only improve with time (I truly hope so!)

So, I wonder what functional for a POTS person is - taking care of myself?

Showering without a stool, shopping and having some social life?

Working full time and doing all the things I used to do?

Working out, travelling?

Define what functional for your type of POTS and severity of the illness means, please.

Do you feel functional equals "controlled symptoms and almost normal quality of life" or simply "not bedridden" but still symptomatic and miserable?

[Christy_D]

That definition has changed over time. Functional for my son used to be... able to leave the house, socialize. Now functional means he is able to get out of bed and leave his bedroom to socialize in our living room. Also, if he is able to have his school teacher come is a functional day.

[Leigh8]

Unfortunately, “functional” seems to be NOT bedridden, but still symptomatic. My doctors consider me “functional”. I work full-time, socialize, shop, walk, etc but I just feel horrible the whole time while doing it! But I guess I am still “functioning”.

[MomtoGiuliana]

To me functional would mean being able to take care of myself and my family, and able to go out of the house (not be housebound) much of the time. It might mean still being symptomatic, but not so symptomatic that it overtakes one's abilities to do the above.

I'm glad your doctor feels you can get better.

[khaarina]

I suppose it means something different for everyone and for most of us it changes all the time. You will have to ask your doctor to clarify if you really want to know what she meant, but she probably doesn't really know yet.

Personally, I try not to think too much about what I will be able to do physically. I find it is better to focus on how I will work around whatever road blocks I end up facing. Over the past two years I've had to readjust my life goals so many times to suit my health situation that it has almost become a game of "how clever can I be?"

What I want the most right now is to go back to school and finish my BA. I was attending a big campus about an hour from my house. If I go back there it will mean I will need to be able to drive, walk, sit, and think clearly for several hours a day AND not have more than a couple days where I am laid up in bed. These days, that is a lot to ask because at the moment functional for me is getting through a short grocery store trip without paying dearly for it for the next day or two. So, I am looking into ways to alleviate some of the strain. I thought about moving closer to the campus, taking as many online classes as possible, paying the more expensive parking to reduce walking, looking into the campus' disability services, etc. If all else fails, I may have to transfer to an all online degree. I will be very upset for a while if I have to do that, but it is better than not finishing the degree, so I will just have adjust my expectations again and make it work.

[Altruism]

I don't like the idea of being considered functional despite feeling like death. Ugh.

[yogini]

For a while when I got POTS, all I did was work 4 days/week, then literally came home and slept the rest of the time. In my mind I became "functional" again when I started feeling comfortable handling multiple normal things a week - shopping, cooking, cleaning, movies, restaurants, laundry. Highly functional was the point that I didn't have to plan every single thing I did around POTS, rest, etc.

I would guess that your dr thinks you can get back to normal someday. I hope she has you on a treatment plan, because that can help speed up the recovery

[Angela]

i agree, especially since you are hyper if I understand correctly, it may be long term illness vs. other pots; i think you will have really good days to combat the bad, especially once your hormones balance out more u will c much improvement:) not that you aren't going thru **** right now.....it will get better, promise.

[Altruism]

Hi Angela, Thanks for the encouragement!

What do you mean by " it may be long-term illness vs. other pots"? Hyper POTS is the only one to stay?! It has a worse chance of recovery? It takes longer?

I'm despaired.

[roxie]

Altruism, you sound just like me! I keep asking the same question and wondering if getting through us only by feeling like death Nd bein miserable. I try to be clever to accomadate and accomplish more things but I just don't know. I've been feeling like I have to come to terms with the fact that I don't know and I can't plan my future. I can only try my best today.

Also, I've been reading up on hyperPOTS and it does say that you it can be managed but you will likely need lifelong treatment.

[Altruism]

I hate bananas,

can you post/send me some links regarding life-long hyper Pots? This is very discouraging, but I need to know

Also, is hyper POTS the same as POTS with hyperadrenergic component? I feel I'm a weird case - no authonomic neuropathy, no pooling... I think my sympathetic overactivity is my biggest problem.

[roxie]

Sure, give me a few minutes! Some people say there is combination pots where it flips between hyper & plain pots. I'm not sure if that's accepted by dr's but it wouldn't surprised me. HyperPOTS is short for hyperadregernic pots so yeah that's be the hyperadregernic components.

[Ash]

Hello,

I am new to the board, but it is funny because I was just talking to my cardiologist about what being "functional" really means. A year ago I was bedridden with my symptoms, some days it was all I could do to get the bathroom, and there were many days doing it ment I had to lay on the floor for about 30 mins before I could make the trip back to bed. One year later, I am able to work as a dental hygienist 3 days a week, cook dinner, and be a little more active and sociable, but in all reality most days I feel the same way I did a year ago. I have all the same symptoms, I think have just gotten used to feeling terrible, and am so tired of feeling like a burden so I am just pushing on regardless. I mean I went to work the other day with a standing (no movement) heart rate of 127 ( with movement I was in the 150-180 range and resting was 72) a year ago I would have been in bed, but I pushed through my symptoms because I didn't want to be a hassle to my coworkers and have them reschedule my patients for the day. So when my cardiologist asked me the other day if I am truly doing better I said, no I have just learned to cope. I have learned that staying out till 11pm playing cards with friends means I am not gonna get to do anything the next day, or if I go ride my horse for an hour I am going to be down for 3 days, I have just learned to spend my energy more wisely and limit myself so I am more "functional" and his response was the best thing I have heard yet...that is unfair! You shouldn't have to compromise your life like that, however, unfortunately that is part of PoTS and CFS. I swear I could have kissed the guy (this was also the first doctor of many to tell me it "wasn't in my head", "I was too young to be sick" "was depressed,unconditioned" etc) and I mean it is sad to think, but i dont think i am going to every feel like I did prior to PoTS, I mean i hope one day i will but to me I am accepting this as my new "normal" my new "functional", as hard as it is and as much as it *****. But just to have someone just tell me that it was okay and NOT normal lifted such a huge burden I feel like every day I put on this "pretty sick face" and try to live this normal life because I am feeling strong for other people all the time, and every day at work I hear well you look better, you look amazing, etc, that it was so nice and refreshing to hear someone tell me what I am feeling every day is NOT normal and to just confirm that I am struggling was great....sorry I am like ranting on your page : ) but I would say when it comes down to define " functional" i think it really depends on where your at at that moment, sometimes being functional is able to shower, sometimes work, or leave the house...but I think we need to remember that it is okay to not be okay some days, at least that is something I am working very hard on. We just have to keep telling ourselves one day we will hopefully feel better then what we did a week, month or year ago. And that although what we go through every day isn't our "old normal" it is okay. Because one day we will hopefully be more "functional" then the last.

[boymommy3]

Oh boy....I think the answer to this changes. I have a long history of strange illnesses and uncontrollable hyperthyroidism, but POTS was not in the picture until about 2 years ago. I have had problems with my thyroid for almost 15 years, so since that has always been documented EVERY. SINGLE. TIME. something came up we all (doc, husband, family members, even me) attributed it to thyroid. I now believe I have had some underlying POTS issues for much longer than 2 years. However, two years ago I guess we would consider that to be my onset. I hadn't been well for months, but was trying my best to keep up. I have 3 boys and we homeschool. I have a very busy schedule. But after months of not feeling well, I finally crashed! I was bed or couch ridden for weeks and weeks. I can specifically remember not even being about to eat a meal at the dinner table with my family for over 2 weeks. I couldn't eat, let alone sit there. It was absolutely horrible. For me this is when a strange thing happened. One day, like a literal light switch I was better, like never felt better in my life! So "functional" for me then meant that I really did get back to my old self and maybe even better. Over time I had some bumps in the road but generally stayed well. Now, two years later, here I am again.....I hadn't been feeling as good for a while now but just attributed it to our busy schedules. All of my family got the flu early in December, me included, and since I have crashed again. I was so sad!!!! It has been weeks and weeks now. My doc has started me back on a bb and I am drinking Gatorade everyday and while my "functionality" has improved some since Christmas, I have yet to have that light switch moment (which I keep praying for, but know it may not happen). For now functional to me is once again being able to accomplish anything. At this point it's a daily struggle to feel well and pretend that I am ok. The frustrating thing for me is, I feel like it's a constant 2 steps forward and 3 steps back. I will have moments that I will start to feel more like myself and "normal", good days and bad days. And then BAM... I feel horrible again. Actually it happened today. Didn't have a good morning, muscles twitching like crazy, but after I drank my Gatorade I felt a little better. We all got ready to go to Pizza Hut to meet some friends for a birthday party. I was feeing prettyl good. We went to Michael's and I even remember in Michael's thinking to myself, "oh it feels so good to be out!" I haven't been out hardly any since December. Only when I have absolutely had to be. And then BAM...we were leaving Michael's and I started feeling bad. So exhausted! I couldn't get to my car fast enough. I thought I was going to fall over at any moment. I just wanted to be home. Now I am having lots of muscle twitches again this evening and just feel like I can hardly move. So, one day functional might mean being able to get out of bed, and another it might mean being able to cook a meal. Ideally, to me, however, it would mean being able to live normal life. I pray that's what will happen for every single one of us!

[Relax86]

Functional for me means that I can complete my job; I have no other work related goals such as a promotion or furthering my education. I have put being driven completely on hold. I exercise most days in the tolerable range that I can. I hang with my kids (I'm lucky b/c they're 18 and 14 so more self sufficient) and take care of some of their errands with and for them. When I can't my husband drives me or does some running. I make plans with friends so I can try and forget symptoms. It does help. I space out things like a concert or a party or anything that means crowds or heat or walking distances. I significantly plan food, hydration....I can never spontaneously eat. I embrace the good days and pray on the bad. If I need help undressing or getting thru the grocery store I ask.

None of this behavior is the old Tracy. But this is me today and I am trying to wrap my head around her and love her a little.

[Angela]

well, that was sweet relax86. makes me feel a tiny bit better of a ****** day.

[ramakentesh]

I hate bananas,

can you post/send me some links regarding life-long hyper Pots? This is very discouraging, but I need to know

Also, is hyper POTS the same as POTS with hyperadrenergic component? I feel I'm a weird case - no authonomic neuropathy, no pooling... I think my sympathetic overactivity is my biggest problem.

Most people dont necessarily have true Hyper POTS, but rather a hyperadrenergic reaction to other factors (neuropathy, blood volume, and other factors).

[Joann]

Ramakentesh,

That makes me have a little more hope that I don't have true hyper pots. Have testing coming up and hoping for some answers.

As to functional. It changes from day to day. There were times when functional was just getting to bathroom to bed, and if lucky to the couch

But after medications and learning how to manage some what, I can have a few days where functional is taking care of my family, making meals, doing errands and going to work one day a week. Then I can back slide and functional is just getting up and trying to act normal for my daughter, and trying to force my body to eat and drink and just stand up!

My hope is that functional will be able to complete a somewhat normal day without feeling like death. I wouldn't even care if I could never do steps or inclines again.