How do you handle this?

[Poohbear]

Hey everybody!

I have been very sick lately, my POTS has been acting up more and I haven't been able to post much or be sitting up for long periods of time (when I am up I'm trying to get things done...get meals, do laundry---basics of daily living).

I'm finding myself particularly frustrated today. I was able to attend church this morning and while it's nice to get out and see people I know and miss, I'm equally frustrated by it.

How do you all handle other people? I feel like #1 NOBODY understands. People will say things like, "I'm so glad you are here" but the way it's stated it comes across to me as, "I'm glad you're here because that means I feel better and I have no responsibility to call or visit or check on you". Like these people totally miss the fact that yes, I may be in their presence but it takes almost all of my energy and I don't feel well the whole time I'm there. I'm not able to participate in the ways I want, I can't sing, I can't stand, I can't kneel etc etc. I felt like the whole time I was there I was being painfully reminded of all the things I CAN'T do. I don't want it to be this way. I want to focus on what I can do but at times it's hard when all the things I can't do are "thrown" in my face. #2 I feel like so many people have expectations of me that I just can't meet. I find it hard to not listen to everyone else's criticism.

All of this makes me question what I need to do for myself and I really don't have the answer. I don't want to isolate myself from people and yet, when I force myself to be around them I usually come home feeling emotionally upset because they can't see the pain I feel (both physically and emotionally) and I feel like I can't share it because they still either don't understand, tell me I shouldn't feel the way I do, or try to sugar coat things (which I really think is THEIR way of making THEMSELVES feel better).

Any suggestions? Does anyone else relate to this?

[Guest Belinda]

poohbear- I can highly relate to your problem..I can give you just a small scenario. Over Christmas my parents came home from Florida. While this whole year they had no idea what was wrong with me or I was just going crazy, they just left and went to Florida anyways. During Christmas I tried my best to be normal and do everything around the house..I faked how I felt and was so uncmfortable inside. It aggravated me soo much.

My mom has rrepeatedly said to me "oh it's just POTS" put a smile on and get through the day. Mind you I am stricken not only with orthostateic problems but everything else going beserk in my body.

I too, don't know how to handle it anymore. I FEEL AWFUL. The only thing to deal with people that are close I guess for me is to realize they aren't going to change their points of view and just ignore it or not let it get to me.

There are so many things I will no tbe able to do again,and I just find myself asking..how am I going to get through this? I have two boys 10 and 6 that will never know from now on just how much I wanted to do the things I used to with them ie.volunteering at school,dirtbike riding, etc.

I see people(moms) everyday that seem so perfect to me..yet you know I realize that noone is perfect and just because there problems don'

t show on the outside doesn't mean they don't have any.

I am sorry you are feeling so down I wish I had some good advice other than my experiences recently.

Keep your head up Poohbear..Hugs to you.

Belinda

[michiganjan]

Dear Pooh,

I am very sorry that you are so sick and have to miss out so much.

Most people really don't understand.

#1 People who say "I'm so glad you are here." My reply would be, "Thank you! I have been so sick lately that I am happy I can be here today, because tommorrow, who knows?"

If you are able to leave the house and go to church, celebrate it, period. Turn a blind eye to the can'ts (stand, kneel, sing). You are right--doing this is VERY hard, but life is all about doing the hard things.

#2 It is hard to listen to other's criticism, especially when the criticism is unwarrented. I find that I get more respect and help when I stand up for myself in a matter-of-fact, nonemotional way, rather than being apologetic or upset. I have even interrupted criticism as a way of not accepting it. For example, someone says, "If you managed to get to church, surely you can manage to do the grocery . . ." I might interpret and say "Yes, I did, but it took all the strength I have today. The grocery is beyond me at this point. Will you call me later in the week and check to see if I need anything?"

One thing that stood out to me in your post is that both #1 and #2 begin with "I feel like. . ." So we are really talking about feelings here.

The difference between being able to focus on the cans instead of the can'ts is how depressed we feel at the time. If one is depressed than one feels hopeless. Your case is not hopeless.

I do not know what you have been through to get help from doctors. I do not know what meds/other helps you have tried. However, keep on trying. Always have a game plan for what you are going to do next to help yourself get better. Change the plan as you play it out. For example, if your plan is to try a certain med, and you try it and it doesn't work out, then tell yourself that you gained a little knowledge and now you make a new plan. The secret to having hope is to always have a plan and to never assume that the way you feel today is the way you will always feel.

Your symptoms will change as time passes. Some things may even get worse, but some things will get better. The one thing we can count on is change. You can even plan some changes. What can you change that may have a positive impact on your quality of life?

Right now is an excellent time to be hopeful. I am amazed at some of the new knowledge about POTS and dysautonomia. They are figuring it out. Effective treatments are the next step after figuring it out. In the meantime, we live to the fullest we can and we keep on following our plan until we get a favorable shift in the quality of our lives.

[Dawg Tired]

People at church are very understanding. I make it there about half the time and the rest of the time they know I am having a bad time, they just seem to appreciate the times I am there. I do not stand up to sing or pray, I remain seated for the entire service and even sometimes put my feet up on the pew beside me. They asked a lot of questions and I made material available to read for those that did not understand so that may be why they are so understanding.

[morgan617]

My best friend has been having a flare of arthritis. She called me the other night and said she just wished I could understand what it's like to be chronically ill.......okay....I said I thought I had a pretty good idea and of course she realized what she had said and laughed. Thought it was funny.

You are just not ever going to have people understand until they've been there. That's just the way it is, sad as that is. A guy chased my son, who was on foot, with his car, at school, for parking in the handicapped spot. My son has had arhtritis since he was 11. The guy was yelling that Jake didn't look handicapped to him, although all you have to do is watch him walk.

It's a matter of what you are going to let bug you and what you aren't. I don't really give a rip about how people react to me anymore. I know how the people who really love me accept me and the rest can go away. It's embarrassing to have something happen in public, but the treatment is about the same, have you noticed.

My point is, people are tactless when you don't look sick and when you do. What's important is how you respond. My response is no response and that takes away their power. I find the more I defend myself, the more angry I get. So I decided anyone I have to defend or explain myself to, isn't really worth the effort. I mean this in the type settings you are talking about, where people are supposed to know you. morgan

[bamagirl]

I totally understand how you feel. I have my husband, my son,1 personal friend, and my Dad out of all of the people I know who understand this illness. Sometimes when I have company I am afraid to smile or laugh because I know two days later when they call and ask in passing how I am and the answer is not good, they will say "well she was laughing two days ago". People think if you show up somewhere or laugh or smile or wear make-up that you are all better. When people tell me I look good I say things like "It's a good thing I don't look as bad as I feel!!!! The people who WANT to understand will understand. I have found, unfortunately, that most people really don't want to understand because illness scares people. The people who mean the most to me understand and don't question my minute to minute symptoms and I personally am not going to constantly reinterate my condition to the ones who question me every time I can't be what they need me to be just so it will make THEM feel better! Best advice I can give is: Do whatever you need to do to get through the bad times and cherish the good times and NEVER be afraid to get a little harsh to stand up for yourself!!!!

We all know how strong we are!!!

bamagirl

[Guest Belinda]

wow I judt have to say there is some really good advice on these posts even though I didn't post on this subject.

So, I am going to thank you guys too for your insight as things are really rough for me right now too.

Thanks..Belinda

I am too weird-huh?

[Mrs. Glass]

I totally relate to you. I used to be very active in church, and all of my friends went to the same church. Before I got so bad sick that I could not go to church, I had phone calls all of the time. Even when I had surgery on my leg, the whole church got together and made my husband and I meals every day for a week.

Now that I am not able to go to church anymore, no one ever calls me. I know it is just because they dont know what to say. But I feel totally isolated. And when I call one of them I feel like I am bothering them. My pastor calls me about once every two weeks or so and that is it. I know that he is busy but I do feel isolated. The only human contact I get anymore is from my family and when I go to the doctors office.

Some days I have to think very very hard to find reasons to just keep going. I feel like I have been written off. I know that they dont understand why I cant go to church anymore. But I have tried to explain it to them. I actually thought that I was alone in feeling like no one understood what was happening to me, but by your post I know that you are going through the same thing.

I thought that I had true friends but I guess it just goes to show that there is probably no such thing as true friendship anymore. So I just lie on my couch and try to watch the stupid tv and hope that the day passes by quickly. Vanessa

[Jacquie802]

Hi everyone, it is hard dealing with our illness(es). I find that family is the least understanding. I always have my aunt who's asking me when I am going to get a job. Obviously if I could work I would. Most of the time I just don't say anything. Why bother? I don't feel like defending myself since that takes up soo much evergy and I don't have a whole lot of it. I have one good friend who asks how I am etc. So I am lucky to have her. Although she doesnt' understand alot of things about POTS, etc. I am still glad that I have someone.

Anyhow, I think it is good that wee have each other here on this board. I come here and post because I know that there are ppl who actually "get" what I am going through and know how very real it is. Thanks for being here guys!

Jacquie

[Guest dionna]

Hey everybody!

I have been very sick lately, my POTS has been acting up more and I haven't been able to post much or be sitting up for long periods of time (when I am up I'm trying to get things done...get meals, do laundry---basics of daily living).

I'm finding myself particularly frustrated today. I was able to attend church this morning and while it's nice to get out and see people I know and miss, I'm equally frustrated by it.

How do you all handle other people? I feel like #1 NOBODY understands. People will say things like, "I'm so glad you are here" but the way it's stated it comes across to me as, "I'm glad you're here because that means I feel better and I have no responsibility to call or visit or check on you". Like these people totally miss the fact that yes, I may be in their presence but it takes almost all of my energy and I don't feel well the whole time I'm there. I'm not able to participate in the ways I want, I can't sing, I can't stand, I can't kneel etc etc. I felt like the whole time I was there I was being painfully reminded of all the things I CAN'T do. I don't want it to be this way. I want to focus on what I can do but at times it's hard when all the things I can't do are "thrown" in my face. #2 I feel like so many people have expectations of me that I just can't meet. I find it hard to not listen to everyone else's criticism.

All of this makes me question what I need to do for myself and I really don't have the answer. I don't want to isolate myself from people and yet, when I force myself to be around them I usually come home feeling emotionally upset because they can't see the pain I feel (both physically and emotionally) and I feel like I can't share it because they still either don't understand, tell me I shouldn't feel the way I do, or try to sugar coat things (which I really think is THEIR way of making THEMSELVES feel better).

Any suggestions? Does anyone else relate to this?

Pooh Bear

That is what my family nicknamed me when I was a baby. The name still sticks. For as long as I can remember I have always dreamed of joining the military. Dream job... Military? Yeah. At the age of 15 I started working at a restraunt and by 17 I was making about $52000 a year, just watressing! Then on the side I was a part time model for hair magazines. But hey that wasn't good enough. I wanted to live my dream! So on my 18th birthday I went to the recruiting offices and I tried to join the Army. It was either Army or Marine Corps because those two branches were the toughest! Well I decided on the Army that way I be in the medical field. I tought I would be able to reach out and help more people that way. However I didn't meet the weight requirments. I was 4 lbs under weight. So I spent the next 4 months trying to gain weight. Yeah I only gained 1 lb. So I went back to the recruiting offices but the Army SSgt wasn't there so the Marine Corps SSgt called me into his office and told me that he could get me a weight waiver. 5 minutes later I was jumping all over it and signing the papers. I joined the Marine Corps on a 3lbs weight waiver and left for MCRD Parris Island, SC 3 weeks later. I was so excited! While I was at boot camp I out shot, out ran, and out did just about every female in my company. I graduated as 4th squad leader, got a letter of appreciation, and was meritoriously promoted. After boot camp all marines that aren't infantry go to MCT (marine combat training). I was again at the top of my class. After MCT, I went to my MOS (military occupational specialty) school for 2311 (2311 is the code for Ammunition Technician or in short ammo tech). The school was in Huntsville, AL at Redstone Arsenal. That is when I started passing out. The first time that I passed out I was standing in formation. The second time I was at the gym. The third time was when I was on a 3 mile run. The day I did the run... I passed out 20 times and was hospitalized for the first time. Since I missed too many classes I was held back to another class. If I had not been held back I would have been the top of my class again and had been meritouriously promoted again. oh well you win some and you lose some. My next orders were to Camp Lejeune, NC. I was doing okay the first couple of weeks I was there but when I ran 3 miles again I passed out at the finish line. They took me to the GAS station (doctors office) but they just said that I was dehydrated. You say nobody understands you. Try having the entire Marine Corps not believing you. Try going through all the symptoms and pains and passing out and still being an active duty Marine. I am 5' 1" and weigh about 98 lbs. Everybody thought that I was just faking it to get out of the Marine Corps. So yes I definately understand what you are going through on that. I had been having my problems for 4 months at this time and nobody was helping me. Finally I passed out in one of my officers office and I hit another big oak wood desk with my head and moved the desk a few inches. I was out for about 2 minutes. That is what it took to make them believe me. My officers started getting me appointments at numerous hospitals and doctors offices in the state of North Carolina. Finally I had some help but no answers. It took more than half a year before they sent me to Bethesda's National Naval Medical Center. I did the tilt table test and it proved positive so I was diagnosed with vasovagal syncope and I was given propanoal a beta-blocker. The beta blocker jsut made everything worse. Everytime I sat up in bed I would fall right back down. My room mate took care of me as did the rest of my company. Everybody picked me up and carried me around any where I needed to go. They would get off work to get me something to eat and take me to the various appointments I had every week. Even my officers would go to appointments with me. Finally they sent me back to Bethesda but this time as an inpatient. I have been living as an out patient at the hospital for 6 months now. Any day now I will be medically retired from the Marine Corps. I get around in my wheel chair and depend on someone to be with me at all times to catch me if I fall or get sick. They have me on numerous medications but right now the treatment isn't working. The only advice I can give you... KEEP YOUR HEAD UP. One of my Big Brothers in the Corps told me that God looked down and saw a lily (me) in a brier patch (the marine corps) so He is plucking me up and putting me in a better garden. Don't get me wrong... I LOVE THE CORPS! It is the best thing I have ever done. If I could stay in I would! In fact, I am moving back to the Lejeune area to live with my old room mate just as soon as she gets back from Iraq. I truly LOVE the Corps. I am 20 years old and I will be retired any day now. I am just waiting on the orders. The best medicine for me is laughter and being around all these guys that got blown up in Iraq. Everyday I see the guys that had shrapnel tear there bodies, faces, and even eyes. I see the gun shot wounds and the amputated fingers, toes, arms, and legs. Even Brains. We all make fun of each other and help each other out anyway possible. The guys who need canes push me around as there support. I hold things in my lap for the amputees and the blind one would even push me around and I would be his guide. So if you volunteered to help other disabled people maybe that would help you focus on their problems and not yours. I do it every day. I fall over and they pick me up. And we all laugh about me taking naps all the time. My nickname is "Thumper" because that is the sound my head makes when the deck catches my head. Like I said... just laugh at yourself. Don't worry about the others. I take critisim all the time because I didn't go to Iraq or because I have only been in the Marine Corps for 2 year and I am getting out already. But at the end of the day I am still a Marine. I even have it tattooed on my lower back. NO one will ever get to take that away from me. We have this saying, "Once a Marine, always a Marine" and we say "Semper Fidelis" which means "Always Faithful". I know that I will always be taken care of. If ever you need anything or someone to vent to or anything... just write me at sarah_2311_usmc@yahoo.com. I know a lot of people and I can get you help. I have only had my POTS and other stuff for 1yr and 1/2. I have been told that the journey has just begun. I don't know if you believe this or not but God will never let you go through anything you can't handle. Which means you were carefully selected to endure this and He has a purpose for you. It's just you finding out what it is. I believe that God knew that I wanted to be in the military but that wasn't His plan. He gave me my short tour as a gift but He no longer wants me here and I am going to do something else to serve Him. I served my country and I have helped the others who have served. Now He wants me to serve another purpose and cause. The thing I am afraid of is the civilian world. They aren't going to understand me or my condition. I am different, but that will come in time. Just take one day at a time and enjoy the "good days". The days you can go out. Live it up. Call a girl friend up and go do something you like to do. Go shopping. Even if you don't have the money. Just go to the stores and play dress up. Go look at cars and get your friend to drive you around in them. Spend the day as it being a dream day. Stuff like that gets me by. On the "bad days" sit at home watching your favorite movies or listening to your favorite music. If your headaches aren't too bad. Just rest and keep thinking positve! I like to take showers sitting in my shower chair smelling the candels and listening to my music (the barracks only have showers not bath tubs). As far as you being reminded of what you can't do... think about the things you still can do. Believe me I know its not much but maybe you can broaden your horizons and come up with something you've never done before. LOOK... I am use to going to the gym everyday and playing sports with the guys, going to the range and blowing things up with rounds and explosives, going to the beach everyday, doing obstacle courses, and everything else that goes with being being a UNITED STATES MARINE! I had nothing but fun. Passing out and all. I have woke up everytime so far. Mind over matter they taught us. Well I am going to stop preaching to you. But definately if you need anything you can write me okay. I will even tell you all my symptoms and diagnoses. Later Sarah Dionna aka LCpl Price, USMC.

[dmaejean]

I feel the same way about all of you. I have been reading this forum for months and just replied today. My family has been wonderful. I live with my sister and her family and she has taken care of me since March. I had a simple lap gallbladder surgery and have had severe problems since which turned into POTS and CFS. I try to go to church as often as I can and my priest told me that if I needed to lay on the floor, he didn't care if I could get there, so I usually sit in the back of the church in a room where I can put my feet up on a pew and still listen to the service. My family has been great too, but it has been wonderful having all of you who feel the same as I do. I sound great on the phone and look like a feel great alot of the time, unless I am puffy and my face is flushed, but that is no indication of how I feel on the inside. My insides are usually crying to lay down. Anyway, thanks to all of you for being there. Donna

Hi everyone, it is hard dealing with our illness(es). I find that family is the least understanding. I always have my aunt who's asking me when I am going to get a job. Obviously if I could work I would. Most of the time I just don't say anything. Why bother? I don't feel like defending myself since that takes up soo much evergy and I don't have a whole lot of it. I have one good friend who asks how I am etc. So I am lucky to have her. Although she doesnt' understand alot of things about POTS, etc. I am still glad that I have someone.

Anyhow, I think it is good that wee have each other here on this board. I come here and post because I know that there are ppl who actually "get" what I am going through and know how very real it is. Thanks for being here guys!

Jacquie

[OCsunshine]

This is a topic that I don't really have any answers for... but I totally understand what you're going through. I feel like this illness has made me much more sensitive to other disabled people (special needs kids, people in wheelchairs, people disabled in many various ways...). I feel blessed to be one of "the ones" that -gets- what it's like to have a chronic illness/disability.

Now other people... people that are healthy and very ignorant to illnesses, sometimes I just can't stand to be around people like that. They seem SO self-centered and just... ignorant! When I go to church I have a rough time, too- I can't stand and participate in things. I just sit during the songs and feel like I'm sitting down in this little hole with all of the healthy people towering over me. It's depressing. :-/ But at the same time, just the act of me sitting down is an obvious way to SHOW people I am ill. It's like making a statement "HEY i am NOT fine!!"

The people that bother me most are the ones I've been around for my whole life, but STILL don't get it! It's so aggrivating!! People in my church (which I have attended for over 20 years) still come up to me and say "did they figure out why you're tired so much?" TIRED?!?! That is not my problem!! And YES because I was diagnosed TEN YEARS AGO! Get with the program, people!

When I have those confrontations, I come home miserably sick (worn out from the activity) and I also hate the whole world. :-/ It's so sad to not be understood!

The only thing I can do is depend on my husband to speak up for me, and spend time around my close family that has SEEN my illness and understands the best they can.

I am taking a step towards part of this problem, though.... this coming weekend I'm going to tell the kids in our Youth Group about my illness. I'm going to give them printed out information (easy to understand) about NMH and OI and CFIDS and tell them my story about how I became ill and how I live each day... I don't want them to grow up to be ignorant like the rest of the world.

[michiganjan]

For Vanessa about the church situation:

Is there some job you can do for your church from home via computer and email?

Such as keeping the church schedule of events current, sending out meeting reminders or schedule changes to members.

Updating the church webpage?

Coordinating a prayer group?

Would your pastor be able to think of some way you can help the church and stay in contact with the members from home.

As for friends:

When I am doing especially poorly, I will call up a friend and ask them how they are and really tune into their problems and concerns because it takes my mind off of my own problems. Whenever I talk to anyone, I try to be first to ask how they are. I also try to remember what is going on in their life that I can bring up, such as, How is your neck pain? How did your son's game go last night?

It is depressing to be so chronically ill and our illness is always right there in our faces, so it is hard to forget about it and be carefree for even a little while. It becomes very easy to feel sorry for ourselves. It becomes very hard to listen to the concerns of others with true sympathy when their problems seem so very trivial compared to what we are facing.

I think we are better off when we do exactly that. It keeps us in the loop, it keeps people thinking about us, it puts us in the position of being a friend to others, as opposed to waiting for people to be friends to us.

This attitude takes us out of ourselves, which is a place the chronically ill should visit more often.

[DancingLight]

Poohbear,

It has taken me so long to respond to your post b/c it HIT SO CLOSE TO HOME for me...so sometimes I just can't bear it.

You are not alone in what you are feeling.

I am struggling a lot lately. I am homebound and feel awful all of the time.

Over the holidays I had a ton of visitors and phone calls and I was so miserable. I felt like the worst person...here were all these people who love me and I just wanted it to be over with b/c I felt so sick I couldn't enjoy being with them.

I work really hard to do what Jan talked about....focus on my friends and what is going on with them and remember everything that is going on in their lives. But, it does sometimes feel exhausting and trivial. Still, I wouldn't want to miss out on all of those things either.

I am not making one bit of sense, am I??? And I am probably sounding like the most mean person ever. Yikes.

I just sometimes feel like I make a lot of effort to reach out and be with people or call or email and sometimes it does feel 'empty' like you describe and I feel worse. But, my relationships are still my greatest joy in my whole life, regardless of the struggle they entail...

Okay, seriously rambling and making no sense whatsoever. But, I DO hear what you are saying and I also find those who 'don't get it' so exhausting and frustrating. Most of my friends are really starting to 'get i't and at this point, after almost 8 years...if they are still my friends, I hope that I am doing SOMETHING right to keep them in my life....

Love, Em