How Do You Deal With Visits/visitors

[bebe127]

I was diagnosed with POTS 3+ years ago and my life has never been the same. I want to ask a question that I'm fairly certain some of you have had to deal with and I want to know what you do in this case.

I have a long lost cousin that I've been in contact with via FB. We don't really have much correspondence with her via FB, just the visual catching up so to speak. We grew up in the same area but rarely saw one another and I haven't been in contact with her or her family for over 20 years. Here's my quandry: She recently pm'd me and expressed that she would like to get together and gave me her phone number.

Bit of background on me and my illness. As many of you know and have experienced, being dx with POTS can be devastating to say the least. I am not one to let people even know that I have this illness as I don't want pity or to be felt sorry for. Mostly just close family and friends know about it, and just because they know about it doesn't mean that they completely understand all it entails. They see me looking well, going on vacation, getting things done around the house etc., but what they don't see is the daily suffering that I endure due to having POTS.

That being said, I don't know how to respond to this family member that wants to meet up. I only drive when absolutely necessary and I don't particularly have the energy to have people at my house. Do I explain all of this to her? Do I explain that I'd be willing to catch up on the phone or through email? What do you all do in situations like these without looking or sounding like a complete loony bin?

Thanks for your input

[SaraC628]

I actually am not afraid to tell people about my Orthstatic Intolerance. It is so much better for them to know that is why I was fired from my job and that is why I never do anything anymore. And why I now sound like a moron when I talk sometimes. (I have horrible word finding now.) I always try to explain it in simple terms though. I tell them that basiclly there is not enough blood getting to my brain and other vital organs. I recently had my husbands family over for our annual Christmas party. Company is always really taxing on me. I need to have the house spotless for guests and when having a gathering my inner party planner comes out. First of all, these visits happen maybe once every six months. Secondly, I plan everything that needs to get done and do a little each day leading up to the visit. Finally, we had a huge crowd so during times of a lot of commotion I went into another room in order to make myself last longer. If your cousin is coming alone this would not likely be an issue for you. Oh and another thing, even though our family comes from out of town they are never invited to spend the night at the house and typically can only come over during the event. (Sounds harsh, but I can barely handle the gathering.)

When my husbands family was here his mom did say, "well you look great." And simply replied that I wish I felt great. When she continued to say that I explained my day to day feeling and explained that I would have rather been in bed at that moment. I usually give an example of something that anyone would clearly understand is not normal. For example, I told her that my heart rate jumped to 130 from sorting laundry for a few minutes.

I would tell your cousin about your illness and invite her for a visit if you think you can manage it.

[bebe127]

Sara,

Thanks for your response. I did pm her through FB and told her that "I don't drive often, long story" and suggested that we catch up on the phone. I figure, if she calls, I can explain it all then. She is currently out of the country; she is an artist and is in the Dominican Republic now. So I "put the ball in her court" so to speak (even though I realize that is the coward's way out). Oh well, we'll see how it goes.

We don't usually have gatherings at our house, and we don't go out too often as many times I'm not up for it. We are kinda "homebodies" anyway, so it doesn't really bother us in the least.

My husband's father and mother come to stay with us for months throughout of the year. They work where my husband works, but they work for a contractor, so the work is intermittent. I love them dearly, but they can soooooo get on my nerves. They don't fully understand what is going on with me and they are the type that go, go, go. My FIL is 70, still works, MIL is a few years behind, but works too and exercises daily. They do try to help out when they can, they just don't really know what to do. Sometimes they invite other family members to stay at our house during their visits and that about sends me to the ER. My husband, thankfully has had to "put them in their place" a few times. It's so frustrating. My MIL asks me all the time, when she is here, "how are you feeling today?" I know she means well, but she just doesn't "get it" AT ALL. Finally, I told her..."look, I feel crappy every day of my life, it just depends on the degree of crapiness." She, sadly still doesn't get it. I even gave her "The Spoon Theory" to read, hoping that she would gain some understanding...NOT! They seem to be of the belief that if you ignore it and/or pray hard enough, it will go away. UGH! Please don't get me wrong, I am all for prayer and try to pray daily, but I believe that the Lord has a reason for everything and an answer to every prayer; sometimes it is yes, sometimes no and sometimes it is just wait; I have something better for you. Just the other day she told me of the story of the woman that reached out to touch the hem of Jesus' clothing and was healed. I related this to my husband and his response was...what about Paul, who suffered and suffered and decided that God chose not to heal him, and he dealt with that.

I get the "well you look great" all the time to which I reply..."If I only felt as good as you seem to think I look, I'd be doing alright!" I know how you feel.

Anywho, I'll leave the ball in her court and see what her response is.

BTW...love your Jeremiah quote

Thanks again for your reply.

Hope your days are well

[NaomiSpellman]

I stopped having visitors completely because I get so stressed out from the extra work, and can't respond to conversations anyway while having episodes. I do offer to meet people in the morning outside the house, because I have more energy and have not yet reached my limit. I can participate in conversations in the a.m. Also I had to move into a tiny wierd apartment after I got sick and there is really no room to have anyone here. Finally, most people really are not motivated to spend time with anyone with a mental health condition, so I guess that works in my favor, since I have limited tolerance for interaction due to symptoms. Occasionally my son's friends will overrun the apartment and I am basically just panicking and trying to stay calm until they leave. I'll try to stand up and do chores then, and try to appear like a normal person should at home.

I appreciate the procedure that SaraC628 follows, as it lays out the ground rules. If you manage a house, surely that is a good way to do it. I agree you should tell people in terms they can perhaps understand. After all, there is no cure. In my case my POTS got worse in my 40's and I believe this is typical. But I also understand why you are reluctant to let anyone know. People will judge you for being disabled, make negative comments about you even when you are right there, and some will insist it's all in your head. Unfortunately this can include your own family. I understand how painful this ignorance is, especially since you are trying to make a connection and lay the ground work for reasonable and sustainable interaction with people. But the judgements people make without knowing you are sick, are also ignorant and painful.

In the end there are people who listen with an open mind, and there are those who insist on their own ignorance. This difference is in part genetic. So try not to judge people for insisting on ignorance. Ignorance and prejudice were the only tools we had as humans until recently, when it came to protecting ourselves against bewildering afflictions.

Thankfully today we are coming to understand how genetics and environment plays into neuro psych disorders. But peoples fears and prejudices change only slowly.

[bebe127]

Thanks for your response NaomiSpellman! I'm so sorry that you are dealing with all the turmoil that illness can incurr.

I've left the ball in my cousin's court. I think she is back in the states now. I too don't like having others in my house as I seem to think my house has to be spotless and I just don't have the energy most days, except if it is to entertain those that truly try to understand my predicament and don't really care if my baseboards are clean or not .

We'll see how it goes. In all honesty, I don't really care at this point. I know it might seem selfish, but I just have to think of myself and my family at these times. I only have so many "spoons" and I have to reserve enough for my immediate family, ie: Big Handsome and children. I really don't have the energy for much else.

I just accept that some people won't understand and that is ok. My Big Handsome and my children (bless all their souls) so try their best to understand and keep me grounded. They also are so supportive of me and my illness, even though it can be so frustrating for them at times. I really am truly blessed.

I might be helpless at times, but I am never hopeless!!

Hope you are well today and my wish is that you are relieved soon.

Many blessings to you

Bebe