Just Need A Sympathetic Ear.

[jump]

Hello all,

Sorry if this sounds like a pity-party, but I'm having a really hard time lately keeping my spirits up. I've been in an unusual amount of pain lately (chest pain that I still don't know where it's coming from); and then recently I started having more tachycardias than usual (usually on meds I don't go much higher than a 50 bpm to a 90 bpm jump, but lately it's been more like 50 to 115 sitting/standing -- which is still better than before meds, but man it is exhausting). I can't get anything done because I'm so tired. And although I have an appointment to see my doc (mostly about the chest pain -- I'm having trouble breathing now, which is new) I don't feel overly confident that anyone will help me. Although my family outwardly is very sympathetic (which I am grateful for) I still get the strong sense that they think I'm just being weak, that if I had more willpower I'd be able to do more, etc. When really I'm trying my very, very hardest to ignore the pain and the fatigue and just get on with my life.

I think, too, I'm starting to realize that this isn't really going to go away completely. That I might have better weeks or better months, or find a constellation of drugs that help, but this probably isn't going to just disappear and leave me a perfectly healthy, pain-free person with no weird heart symptoms. I guess usually I just feel lucky that this isn't worse. I normally feel really lucky that I don't have something fatal, or completely and totally disabling, or completely disfiguring. I have close friends dealing with cancer, and I feel guilty feeling sorry for myself when people around me are struggling with things that are much worse.

But, even though I still do feel lucky that this isn't worse, I still feel really overwhelmed with trying to cope with this pain and feeling like others don't really cut me all that much slack -- or if they do, it's kind of like, "Oh, you know Jump, she has no stamina, we can't expect her to do X and Y" with a little smirk and an eye-roll. Instead of understanding that I WANT to be able to do all those things everyone else wants me to do -- I WANT to work full-time and run around volunteering for things and participating in things -- I just CAN'T. And I get so mad that people seem willing to understand that I'm not going to do certain things but unwilling to accept that it's not my choice, that I really am sick (instead of just lazy or something).

Sorry to vent like this. I know you all understand this all ready. I just feel so lonely dealing with this, and I hate thinking about how I'm going to have to keep dealing with it.

jump

[firewatcher]

Jump,

Hang in there and vent away. Can I come to your pity party? I'll bring gatorade and pretzels, what movie do you want to see? I like Analyze That with Billy Crystal.

Jennifer

seriously--when I am down after some stupid doctor's appointment, I like to watch that movie...Robert Deniro(?) has NONE of the social niceties that we all have and tells it exactly like I'd like to. I'd get thrown out sooo fast if I did that, but I'd love to say exactly what I think sometime. A funny movie allows me to forget my world for a while and a good laugh does wonders!

I hope you feel better soon.

[gwensvilla]

I know how you feel even though I am not the patient.. as I got fed up of arriving in hospitals to find my daughter was being treated as 'lazy' sleeping all the time and when not being to sit up beyond 30 degrees, she was being asked to walk to the toilets or hop out of bed and walk to another trolley etc etc and was treated badly,disrespected bcause of her condition, as you say the innuendos and the rolling eyes... we all wished she could, no one more than her...!!!!!!!! people dont seem to'get it' even when you repeat it time after time after time.... only now can she sit up for any length of time and is starting to stand up even just for seconds... but no doubt we will be walking the walk of the rolling eyes for a while yet... dont hink I will be holding my tongue though, I can tell you... gwen

[momofsara]

Its totally understandable to have those feelings. I see the same thing with Sara. She gets so down and utterly hopeless sometimes. Her friends have abandoned her and since we have a very small family there is not much there either. So, sometimes the only thing left is to vent, vent and more vent. Just get it out and dont try to keep it all in. You know we all understand here. When Sara is having a "down time' I just let her rave on, and dont try to tell her "oh it could be worse, try to stay positive, hang in there, you cant give up" etc,etc.... If she feels the urge to cry, then I just let her start the flood.. Mainly, I just am there for an ear and for a Mother hug when shes ready for it. Sending you a gentle hug ---Susan

[ladyt]

Hi..

u are totaly alowed to have a pity party.. I have them too.. And i think they keep me sain, but if every day is a pity party one might need some outside help..

Its a good quality to see that some one els may be worse of, and it might keep things in some prespective.. (i am great full of living in a peacefull contry etc , dont know that many sick people).. But the closest one is one self, and our pain is real.. That some one have canser, does not make our strugles less (if u know what i meen..?)

momosara It nice to hear u take our dauthers feelings serios.. becauos saying be positive etc might come from a good place, but it can feel belitleling for the one going throu a bad spot.. but ofcourse a reality check and the keep up the spirit has its moments too.. I my self whis my mom could be a bitt like u (not that i know u but u know), lett me be sad, agree on the fact that my life ***** somethimes bigtime, and that not all has a solution ore go away like a bad cold..

have a nice party everyone, if it a pity party or ust a party..

[Guest tearose]

I hope I'm not too late to join you in your party jump. I brought a pan of roasted fall vegetables, some hot apple cider, a batch of cupcakes with pink buttercream icing, soft warm blankets and fluffy pillows for all.

You are human. It is normal to need a sympathetic ear, to want for better, to find it hard to accept the limits of what is real in this moment.

Please know you are not alone and that the wave of fatigue will slowly change. Your body has some new changes you have to figure out and this cold weather is hard on our fragile funky beating hearts! Sometimes I make a list with pen and paper of what my issues are and see if I can go through the list one by one and try to make improvements. When you have done all you can to feel better, than you must decide if you can live with that or need to see the doctor. Don't compare yourself with others. You have this body you have to manage and they have their body. It is good you want to be healed and better but if realistically you are limited, than try to embrace those limits. Be gentle with yourself. It may take a few days, a few weeks, ...a few cupcakes

What are your favorite things jump? Can you take joy in the fact that you are good at your fav's? After a long weak spell when I felt my brain had fallen asleep, I wanted to shake those brain cells up a little so I started trying to learn new things. I started writing poetry and it is creative and I feel accomplished when I am done.

Well, I hope today was a bit better for you.

best regards,

tearose

[ramakentesh]

Chin up I guess - most of us encounter significant improvement in our condition with only occasional relapses.

[willows]

Hi Jump , sorry that your having such a bad time with the world at the minute but it does get better , then bad again , then better , then ................yes, you know up and down , down and up rather like a roller coaster its really just case of hanging on in there to wait for the good time again.

I've had problems with family , friends and even strangers since I was in my teens , I've been called lazy, been called a waste of time, been asked how could I embarrass my family by behaving in such away just about everything under the sun .

Even now there are people in my small village who think 'by the power of thought' they can 'heal me' as in their words quote: ' its just a virus that we all get DEAR (how I hate being called DEAR) and it will go in a few weeks time ....honestly , all you need to do is think positive thoughts and you'll be well again in no time'

And of course I'm not well in this short amount of time they keep referring to, so I'm told that its my fault as I'm such a negative person and I should 'pull myself together and get well'

Needless to say in our small village stuck out in the land of nowhere , when someone like this starts a stupid line of conversation and makes out that its you who dont want to get better and all you need to do is 'pull yourself together ' people with nothing else to do actually believe it !!!!!!!!!

Jump , you know whats wrong with you ( like we all do ) and its shame on all those people who in there ignorance dont understand that POTS is a real condition and unfortunately like you in my youth I naively thought it will go away one day ............and it didnt .

You have to be strong and try facing your family , friends and those who like to make out your just a lazy person with a cold straight in the eye statement ' I am unwell with a rare medical condition ( well it is in the UK and around Devon / Cornwall) if you cant except that I have limitations because of this , then your lack of understanding is your problem , not mine , so would you kindly keep your remarks to yourself unless you are offering me help '

Dont try to keep up with normal fit and healthy people because all you will do is make yourself worse (which you may have already found out)

We pots people are special you know we have been singled out to be able to take life at a slower pace and to be able to see everything that is going on around us, hear every word that is spoken and take life at a pace that most normal people will only have then they are retired and to old to enjoy all these wonderful things .

I watch the birds in the garden and drawer them , I listen to the school children chattering as they pass my house ( some very strange and interesting conversations !!!) and I enjoy every minute of my day when I am up and able to do things and everyday is special to me because like you have said ' what we all have isn't something outwardly disfiguring , totally and utterly disabling to the point we cannot breath, see , hear or think anymore and it isn't one of those awful conditions that can finish us off in a matter of months ................we do have a life and its a good one , you just have to sit back and think about all the wonderful things you can do , can see, can hear and ignore the things that are left ..........after all who wants to run a marathon ( to wet , cold and hard on the legs) who wants to sit in an office all day at the computer ( to mundane, to boring and not enough pay ! )

So on the days when my life is so bad and I have to lay in bed with the chronic pain , excessive tiredness and all the other nasties that Pot's brings to my door for me its a popcorn and Harry potter day , snuggling down with a big soft squishy teddy bear for company ( oooooooops secrets out now ) and drifting off in a hazy sleep of painkillers and Colin Firth from Pride & prejudice ...............ahhhhhhhhhhhhh , 'Another dance Mr Darcey , yes of course , just let me pull up my surgical stockings and take another pain killer '

Keep looking for the good and ignore the rest and one day your wake up and think , my life isn't as bad as I thought , in fact its pretty good Hey , if an old crony like me can do it .......anyone can Ami xxxxxxxxxxxxx

[mountainsunflower]

I agree. It is hard to get everything done that needs done, do the things you really want to, and then have to give up the things you once loved doing... Thank you for sharing your story and know you are not alone, i have been there, i think we all have been there and will be there again. And like you said, i think the hardest part is when others just think you are weak- it just makes things tougher

Take care, hang in there

[firewatcher]

Jump, I need an invite to your party...the more the merrier I suppose. I thought that once I went back on my meds that I would feel better, and I do, a little. I am just wasted, I feel OK for two or three hours and then hit a wall. I can't do half what I want to and I am really struggling with this @#!*ing headache. I don't want to up the Klonopin, but I can't find anything else that helps. If I provide a caterer, can I come too? Sorry to vent on your vent, but I suppose it will just increase the updraft. Either way it stinks.

[jump]

Awwww, thanks ((((everyone)))). I can't tell you all how much this helped me. I feel a million times better reading all your replies.

I think part of the problem has been that I've been really pushing myself all along to stay positive and be optimistic, and, while I think it's important to keep a good perspective, I also think I wasn't being honest with myself. And burying all my negative feelings around this, instead of just letting them out, was just building up and making me feel worse....

I feel *much* better reading your responses and I feel less guilty for getting a little down. It just helps so much knowing I'm not alone (even though of course I wish no one had to deal with this).

((firewatcher)) I'm sorry you're in the same boat, but I agree, I think group venting probably can't hurt -- vent away!! I hope you find some relief, even if it's just incremental, for your headaches. maybe the meds will start working better...

thanks again everyone,

hugs all around,

jump

[iheartcats]

Thanks for the group venting.

I totally understand what you are saying and the smirks and eye rolls. I've noticed some folk have just quit checking in to see if I want to do anything. On the one hand it's a relief not to have to turn them down, on the other it's said I've been given up on...!

I wish I could! do everything. I have to work, not a real choice at this juncture, so much of my energy goes to that. I try to save a little energy for things I enjoy (bits of holiday shopping, occasional movie, bookstore)...and a little for minor housework as I can as some things just have to get done. Of course this pretty much drains me PLUS so there's not real room for adventures and dancing.

I've vented about the coworkers not understanding, but it's just like icing on the cake. I'd rather not have to take any unpaid time, I need a paycheck too and going to doctor appointments and tests isn't my idea of a fun day out.

Alas. I'm glad I found this place. At least we aren't alone.