Hints For Coping

[Mrs. Burschman]

Hi all,

I'm wondering if anyone could offer me any advice on the best way to cope with the fears that come with having a chronic illness (Will it get worse? Will I become totally incapacitated? Will anyone still love me if the worst happens?)

I am seeing a counselor, but sometimes it's nice to see what other people who truly do understand have found to help themselves, if anything.

I'm just scared a lot.

Amy

[DSM3KIDZ]

I just try to stay occupied and take it one day at a time. Also my doctor said something to the extent of not expecting this illness to progress and that it only happens in a few cases. I don't know how valid that is but it helps ease my mind which he was probally trying to do. Also I have seen some improvement minor but it counts over the 3yrs I've been sick so I hope it only improves more.

dayna

[pastordari]

Oh honey, don't even go there - if you can help it!

I was very fearful at the begining of all this. I was afraid I would never feel any better. I would lose my job because of my diminished capacity to do the job. I would be all alone and sick. I know the fears. However, I have a therapist who helps. I have to bring up my fears though. She doesn't realize how scared I get if I am talking about other things. I am bad to talk about little bothersome issues in my life and throw in at the end of the session "oh, by the way, I'm terrified that my body is going to give out and no one will love me and I'll have no money and I'll be sick and who will care for me?

I am on an anti-anxiety med as a part of the POTS meds and it helps the fear as well. I have one I take at night always to help with sleep and to keep the heart rate down. I also have a tiny dose of one to take when things begin to feel anxious during the day and I feel my heart rate take off. This doesn't happen too often any more, but it helps just knowing it is in my purse.

Also, I began to feel better once diagnosed and given the right combination of meds. There is hope!

As I sit here trying to work, sucking down water and Propel, I am realizing that I may have to factor in more time for rest in my life and have a slower pace, but that isn't altogether bad.

If you want to PM me I'll be happy to talk or listen at any time!!!

I can't promise how things will turn out, but my understanding is that POTS isn't progressive. I had to take a break from this forum for a brief time to adjust to my diagnosis because there is so many suffering from major symptoms. The talk of disability and wheelchairs and feeding tubes wigged me out. I had to realize that we are dealing with a whole range of the disorder(s) here and chances are my relatively mild symptoms aren't going to get any worse. It took some time though.

Again, I'll be happy to talk or listen any time!!!

Hang in there!

Dari

[Jacquie802]

Hi,

I think with having POTS we have to take each day one at a time. Some days are awesome where I feel great, yet the next day I'll feel pretty bad. I think one of the most important things is to have doctors who are knowledgable about POTS. I live in Boston so I have some great docs around here, but I understand that not everyone has access to that.

Jacquie

[AJVDK]

I think its great you are seeing a coulser. ( I see one to, and it helps!) The other thing is also try to stay postive, and look at things in a brighter light. Things could be much worse. Tell yourself I am going to make it though this. I have found that it makes it much easier to get thought things. Learn to laugh, and smile. Learn to see the good in why you are going though this illness. I find one positive thing is I use to work so much I missed everything with my son. Now we are best friends. I get a "do over" at rising my son, and for that I am greatful. My illness has tought me to slow down and enjoy life everyday, and enjoy little things now.

[Mrs. Burschman]

Thanks to all of you. I'm hoping that with time, I will be less scared. It's only been a couple months since my diagnosis, so maybe it's understandable that I'm a bit freaked out right now.

I really appreciate the support!

[runningshoe]

Mrs. B,

When your body decides to have a mind of its own and the most basic things that you count on, like standing, become challenging, it rattles your sense of safety. Ultimately we go through this life on our own (spiritual beliefs aside) and it is frightening when we learn that we might not always be able to take care of ourselves. We don't expect to experience this at a young (ish) age. I, like you, have two illness, IC as well, and this compounds the issue. Many people on this board deal with multiple health problems so we are not alone. So now add fear of pain, immobility, etc. to the mix and of course you would be scared. Several months ago my knees were weak with fear by 8am. This is no way to live. I am getting the meds I need (hormones for me too were a big factor) and surrounding myself with positive people and slowly I have become less fearful and less sad. You have to mourn when you get sick too. I can go from giddy happy to totally weepy but this is okay because I am not afraid to "go there" and after the calm or the tears dry, I can move forward and get on with my day.

Today I had to go for my bone density test (another reminder of my early menopause and the effects of all the meds). I got sick of driving behind a slow truck and before I knew it I was in the left hand lane passing everybody. Okay, you have to know me but, I never do that. I usually drive in the right hand lane ready to exit at the first sign of stress. Not today, I was singing to my latest cd purchase and cruising! Wow, I said look how fearless I am now. (Please don't be concerned about my driving, I was still close to the speed limit and it didn't last for long). My point is, even before POTS I had fears but once you face the ultimate fear, (is this going to kill me, can I take care of my kids, etc.) you will surpirse yourself how brave you will become.

Be patient with yourself and take it day by day