How To Handle The Psychological Sequelae From Extended Years Of Pots?

[sue1234]

I have had POTS for almost 10 years. It has left me unable to drive, and as most know, unable to do things such as outdoor activities(temperature problems), frequent family get togethers(adrenaline rushes too much leave me not wanting to socialize), shopping or going out to eat with family/friends(can't stand up long enough or sit long enough in a wheel chair or chair other than my recliner) and basically I can't do much because my body will not cooperate with a change in environment.

So, the first 9 years I did fine. I have been patient with waiting for research, etc., to help with the POTS diagnosis. I have seen my fair share of doctors to help get to the bottom of what may have brought it on. So, in these years, I've lived with HOPE that eventually my issue will be sorted and something, somewhere will help.

While all this is going on, my kids were middle teens, and they were busy being part of school activities, which I did make one sport a lot because it was in winter, which I can handle. To make a long story short, I missed a lot of what my kids/family did. I missed weddings in extended family, I missed my daughter's college graduation, and on and on. During all of this, I really went out of my way to put a smile on my face to them because I didn't want ANYONE to feel guilty that I couldn't participate. I wanted them to not feel burdened by me, and go on and live their life. I must mention that we really had a great family life, and no arguing or major disagreements as they grew up.

Well, this year, I am feeling down as everyone is living their life and assuming I am all okay. I am definitely not a burden, as people rarely check in with me or even ask if we can get together. I'm beginning to feel resentment and slight depression, both of which have NEVER been in my vocabulary before, and I don't like feeling like this!

How does everyone handle when people drop away because you haven't been a big part in their life? I can honestly say I haven't "driven" them away, I think it is just that they are used to not seeing me much(due to them, as I don't drive, but my husband does bring me when we can stop by).

I think it is hard enough to have the physical condition to deal with, but to have the psychological aspect to now handle on top of it? That is quite a load!! I don't mean to be "Negative Nelly" here, but it's becoming overbearing! I've never really thought about it until I've had a chronic health issue, but I can assume many people with life-altering chronic health issues that drag on for years lose family/friends.

[angelloz]

Hello, I have been feeling some of what you speak of. I felt like I dealt with it all fairly well but feel myself wondering how to keep my head up as this goes on year after year. I have told myself I may need to reach out more. Friends would probably stop by more if I just asked them to but I am always hesitant to do this. Today I told myself I am going to try to do one nice thing a day for someone else...I want to feel like there is purpose! It may just be sending a card to someone or email, maybe fixing a treat for my husband for when he gets home from work...etc... I think we just need to keep going forward. I do still hope for improvement. I do think it wears on a person.

[dancer65]

Sue I am really sorry you are feeling this way, I think it is very difficult when you have always put on a brave face as people really have no idea what you are going through. I don't think you are being negative at all, having friends family and fun is what we all take for granted until it is not easy any more.

I don't have any magical answers I am afraid. I do think from my own experience that once kids get into late teens and twenties they just get so involved in their own lives, socialising, dating work etc that they don't mean to forget to contact you but they are cramming so much into their lives time just passes by, however when there is a hiccup and then they are on the phone! I truly think they are all like it, just when you are not well it may seem more profound maybe ? My son does come home every few months but since he is a more serious relationship I have gently had to hint!

The last 8 years have seen a slow decline in my social life, I just don't have the energy left after working. I do very occassionly have friends over for a light lunch, or meet at a café as I find evenings just don't work for me and I have the problem that eating a restaurant meal exasperates symptoms. Although I don't see these friends very often I do txt, e mail and call every month to keep the friendship going, I feel very lucky that they are ok with this sort of friendship. I have lost two close friends because they were offended I couldn't attend their wedding or party, I just try to hold onto the fact that I still have a dear friend who has always been there for me in times of need and my husband who I think deserves a medal. Out of my whole family I only see my youngest son and Mum so I understand the hurt you are feeling and yes it hurts!

Big hugs!

[Guest ANCY]

So sorry you are having this trouble. Face the same difficulty on a regular bases, don't want people to feel sorry for me or stop there lives on my account but wish that they knew what I was going through. I have come to the point where I know some people will "get it" and others will not. I have had some friends drop off a long the way and I've watched others in my age group move on with thier lives getting married and having kids. I think that my illness puts a strain on some relationships, we no longer share common ground and so conversations get awkward at times.

I have found that a couple good friends are more valuable for me than trying to maintain many friendships. It hurts to see them go and I do not push them away just allow them to move on quietly if they so choose. In choosing which relationships to invest my limited time and energy I ask myself a couple questions. What is the goal of this relationship? What can I offer in it? Is this relationship going to help me become a better person? Granted this does not apply to family, they are always worth it!

I have been blessed with a great family who has stood by me through my illness, my sister is actually my main caregiver. I don't know what I would do without them. I like to focus on the relationships I still have and the new ones ive made rather than the ones I've lost.

I found the book "God Needs Me" (written by Lynn Fox Adams) to be very inspiring. She had to get a restraining order taken out against her family who didn't think she was sick and we're abusing her verbally. She talks about the emotional strugles with Dysautonomia, losing friends and watching her children grow up from a distance. (She was in a nursing home at one point) overall a great read.

One of my mottos: sometimes life is worth a flare! Hope you have a blessed day.

[Jan]

I have felt like you have. I told the doctor at the Mayo, that I feel much better when I just stay at home. She told me I had to push myself to get better. I had to retrain my body to be upright. She said if I stay at home, and don't push myself, I would not get better. She suggested to start with short walks. She said the human body is very adaptable and even if you can't cure POTS, the body can learn to adjust. I had give my body the chance to adapt.

I would suggest baby steps.

My first suggestion is physical.

I don't know if you have been to Physical Therapy but get a referral if you can. Get leg strengthening exercises you can do while lying down.

Sit up right as much as you can tolerate. Try to increase the length of time by a minute every day.

If there are any therapeutic swimming pools around, especially ones designed for handicapped people, go there. I go to a pool where many of the people are in wheel chairs. The therapist will do therapy right in the pool. It is easier for many of us to exercise in the water. And floating is relaxing, and can relieve stress.

I have a recumbent bike. I started with about one minute at a time and worked up to an hour.

Walking, even short distances around the house where you feel safe is good. Then walk a few steps further tomorrow. Keep a log because progress is slow.

I have been where you are. You may have tried everything I have suggested and it didn't help. But I would suggest pushing yourself a little, some how, every day. Just a little.

My next suggestion is what to do about the social aspect.

Don't expect people to check in or ask you to get together. YOU have to do the checking in and asking. You are the one who has health issues and knows when and what you can do. People are respecting that by not asking you to do things.

Invite people over to your house. Maybe just one or two people. And have them bring food.

I have 3 friends who have been coming to my house a couple of times a month to play cards with me for almost 15 years now. At first, I had to lie on the couch and we played on the coffee table. Now I sit at the table.

Go to family gatherings where you can sit with your feet up. Someone once said to me, "If you are going to feel lousy anyway, why not be with family." Being around people helps me focus on things other than myself.

It will be hard. But out bodies can be adaptable to new environments if we are brave enough to try. It really does take courage for me to go places.

Ask your self what the worst thing that could happen is? If your husband has to bring you home, heck, at least you tried. If you get over stimulated with family visiting, tell them you are tired and go in another room if you don't want to ask them to leave.

At the very least, pick up the phone and call people just to talk.

My last suggestion and with all other suggestions, they are just ideas, take them or leave them.

I take Lorazapam. I know people thing it is an evil addictive drug. But for me, it completely did away with the adrenaline rushes and changed my life. I now drive, shop and can go to social gatherings. (I don't drive real far, and I don't go to any gathering where it is hot out, or where I can't sit down if I need to). But that over stimulation is not a problem for me as long as I take a med first.

I think POTS is extremely difficult to adapt to. If we were in a wheel chair, due to losing both our legs, at least we might not feel dizzy and anxious and could still attend activities. And I think people understand most other illnesses better than what we are dealing with.

I have missed major life events like funerals and baby showers and it really is a bummer and hard not to have a little pity party. I was extremely nervous about graduations and weddings and not being able to attend. My son and his wife had a late day wedding because they knew I can't function in the mornings.

But every day when my body tells me I don't want to go on a walk, I lease up the dog and go for a walk. The dog is the best personal trainer I could have.

Good luck, even if all my suggestions are worthless to you, I want you to know that I, and most of us here, feel for you and wish you well and you aren't alone in feeling sad about the cards life dealt you.

[Katybug]

Hi Sue,

Have you considered being the one to initiate contact with the people you are missing? I find that people get caught up in their own rat race and people who are not a part of their regular routine don't get their attention. I think that they also don't know quite what to do with us because we don't always even know what to do with us. When I reached out to a couple of friends and said, can we do this....I think I can...I'd like to try because I miss you, they were totally up for it.

We usually meet at a local pizza/sub shop that is 5 minutes from my house. It's low key and we eat and talk for an hour or so and then we go home. Sometimes, they come to my place. I order pizza and we eat on paper plates. They stay for a couple hours and leave. No one cares if I dusted or not (other than me and I had to decide that seeing my friends was more important than my housekeeping. )

Take care of you.

Katie

[SarahA33]

Hi Sue,

I'm glad that you've started this topic. I hope that you can see that you aren't alone in your feelings, also, it was good for me to read the other's stories and suggestions. You provide support to many here on the forum, those in your life are lucky to have you. I hope that when you are ready you will reach out to them, in my experience they are more understanding than we think, I've found I am harder on myself than anyone in my life has ever been.

Please know that we are here for you!

Sarah

[sue1234]

Thanks so much everyone! I knew I wasn't alone in my feelings, and it was so nice to hear it from other POTsies. Y'all gave some great advice.

I guess I should have explained what I can and have done , instead of what I can't do:

I've pushed myself in the last couple of years, going from not being able to stand more than 5-10 minutes to now being able to stand up to 2 hours. That 2 hours is constant moving or sitting on my stool leaning forward. BUT, it is at our business, where I turn the a/c down low. What it is is I cook around the kitchen at our business(inspected), and I make freezer meals to sell at farmer's markets. Well, my husband sells at the markets, because I can't control the environment outside! But, if there is a day that I'm feeling worse, I don't cook. Days I'm feeling okay, I cook. It has been a good incentive for me to get out of my house and DO something! The only thing is when customers walk in, my husband takes care of them, as I just can't do customers. I don't have enough stand up time to stand around and chit-chat. I also don't feel like it because my heart is in the low 100s while I'm upright. This makes me short of breath, and I don't want to waste my upright time in idle chit-chat. It is all about the spoons!!

Also, because I cook, I have and cook every holiday at my house for my kids and their significant others(nobody has invited us to theirs for a holiday). And, it has to be supper, because I don't function in the mornings. If I don't make the big events, such as graduations or baptisms, etc., I HAVE cooked or bought the food for the after event and we meet and eat there(if I go, depending on how I'm feeling).

After the indoor farmer's market that I do go to on my good days, if we have food left over, sometimes we do bring it to my two kids that live in that town and visit for a few minutes.

So, I guess I painted myself as not doing much other than sitting in my house. But, I can do limited things, just not sitting in restaurants, shopping, or anything that doesn't have air-conditioning. And, I cannot do socializing other than kids/family. As mentioned above, I just don't have the breath to do idle chit-chat with people I don't know well, because I cannot keep my side of the conversation going. In family get togethers, my husband loves to talk, so if I need to, I just sink back and let him entertain.

My parents think I'm a hypochondriac because our illness is invisible. So, visiting with them is a stressor for me, as I tried explaining a few times how bad I can feel, but they really don't believe or care to understand it. So, for some reason, they rarely call or come see me, but I go visit them. Not enough, as I always feel guilty, but on Sundays when I'm feeling okay and my husband can drive me.

Someone mentioned meds. When I do go somewhere that stresses me, I do either take a little Xanax that I normally only take to sleep, or, I take a little beta blocker to calm the system. I can't do that regularly, or I feel like a slug.

So, finally, my point is I do stress myself physically to get out and do for my family. I just don't see any reciprocation. And it's not that I want them to DO for me, it's that I want to see them THINK of me and initiate visiting other than holidays or guilt-visits because they haven't been over since the last holiday.

Once again, I appreciate you sharing that you might feel similar to what I feel regarding relationships. It's not easy, and I hate the way I feel because of it.

[Green48]

I to have had POTS for 9.5 years. I to struggle with the losses, and there have been many. The doctor recently told me I was showing signs of depression and referred me to a therapist. Therapy has given me the tools to start lifting above this chronic illness. I have started to accept the fact, I will never get better. I never wanted to admit this to myself, even though I knew it deep down, and it hurt. After 9.5 years I am finally allowing myself to grieve. It is hard with family, and friends for they do not all understand this condition and its effect on me, but slowly I have now started to talk with them in a constructive way instead of hiding from my symptoms. I was holding in so much anger, guilt, frustration, and loss. I am not emotionally perfect, but talk therapy has helped to take the edge off. Hold strong

[Katybug]

So, I wouldn't do this with everyone. But, have you sat down with your children and talked about this?

My parents are terrible communicators (both sets of them). If there is an issue I always have to be the one to start the conversation. There are some issues that all of my parents have with my older sister. In fact, it's the only thing in years my mother and father have actually been able to agree on. However, none of them will have a conversation with her. Frankly, I think they're waiting for me to lose my patience with her and just blurt it out. But, I refuse to do it. They are her parents and they should have the conversation. So, whenever she is visiting, we all sit around with the elephant in the room. And, honestly, I think she genuinely doesn't know that everyone has a problem with her behavior because no one communicates it to her.

I share this because a lot of people are oblivious to their own behavior and often don't realize that their actions, or in this case, inactions are having a certain impact on others. And because you have tried not to be a burden to your children through these years, it may have allowed a pattern of behavior to develop with them. Again, not your fault, it's just something that happens. Maybe talking to them about how you are feeling without placing blame can create an opening in your relationship with them.

[sue1234]

Katy, you are right. I can't expect people to see a problem, when that's how it has evolved due to my POTS issue.

I would not know how to do it, though. Since POTS hit, anything that is remotely psychologically stressful makes my adrenals shoot immediate adrenaline. I mean, I can FEEL that release under the ribs! (just like when you have an almost-car-accident!) And because of it, I end up with the super racy heart, and then I feel like the room is spinning. I just don't know how to physically handle getting into something deep like that.

[Katybug]

Can you write them a letter? That might take some of the pressure off and allow you to really think out what you want to say, proof read, make changes, verify you've said everything you want to say. That would also give them a chance to read it and collect their thoughts before responding.