How Do You Stay Positive?

[Nauthiz]

This whole ordeal has been devastating for me and debilitating. Before i got sick i was a weight trainer, i was about 170lbs and fairly fit, now i am 121lbs and underweight. I feel disabled and full of fear and anxiety and depression i never quite had before. I want nothing to return to being the fit person i used to be, someone who has a feeling of power and control over their own life. If anyone can give me advice on staying positive through this ordeal i would appreciate it. I am trying to recover that old me but it is not very effective so far, it just seems endlessly difficult.

[firewatcher]

This is a hard one. Either you are a positive person or you are not. But if you think about it, you can kick and scream and cry and whine and shout "why me!" and finally when you are a whimpering mess in the corner, you are left in the same position you were in to begin with...just with a headache and stuffy nose. You will appreciate the smaller victories eventually, like making it through the day. Fortunately it does wax and wane. Allow yourself to grieve for the life you wanted to have, give yourself some time, finally acceptance will come...for a while, then it will get hard again. Ultimately, as bad as it it, it does beat the alternative. At least you are still alive and there is hope for recovery and treatment!

How do you stay positive, I simply CHOOSE to, that is one thing that I DO have control over! My own attitude.

[Broken_Shell]

Hi & Welcome!

I am sorry for what you are going through, but I hope that you will find a lot of support and good advice on the forum. As far as being positive, dysautonomia is a crazy journey and you will have good days and bad days. All of us have periods of sadness, anger, frustration, etc. but it is important to take things one minute at a time and focus on the small things. Be grateful for what you do have. I know it's easier said than done, but I agree with firewatcher, your attitude is one of the few things that you do have control over with this condition. The unfortunate reality is that we don't realize what we have until we lose it. For example, I used to be frustrated because I couldn't exercise like I used to (I used to be in dance, swim, run on an eliptical, etc.) and now I can barely stand and walk. At the time, I was thinking "I can do so much less than I used to," but I didn't realize then that what I had several years ago was a lot compared to where I am now. The best advice I can give is to really, really try to look at your life in terms of what you do have and still can do, even if it's in modified form. If you have good support people, if you can walk outside to get the mail one day, if you make it to the store and back, if you feel well enough to spend an hour with a friend, etc... be grateful for these things. It may also be helpful to join a support group or find other people in your area with dysautonomia. Once again, welcome to forum. I look forward to seeing your posts.

~ Broken_Shell

[EarthMother]

Our feelings are not separate from our situation, our conditioning, our environmental influences, our diet, our climate, our family or origin ... you see where I am going? Everything is connected. Sometimes it feels like we have control over an aspect of our lives ... but then we are given this gift of POTS (tone of sarcasm noted) and our lives are completely turned upside down and inside out.

Do some people maintain a positive attitude? Sometimes I suppose. But the bulk of the people I have met on my journey go through the full spectrum of emotions -- we laugh, we cry, we give up hope at times and we struggle to find our way back to a place of ease and balance. At times it feels like an uphill crawl ... because IT IS.

After years of this chronic illness with its peaks and valleys, it is hard for me to even recollect my remembered self. Which can be a good thing. I no longer yearn for the glory days. But rather, I consider that my future still holds endless possibilities and ultimately I have NO IDEA what will happen next. Which is a good thing as well. The only constant in this life is CHANGE. And you can pretty much bank on it ... your situation WILL CHANGE. Sometimes that's the most positive thing we can hold on to.

Salubrious.

~EM

[Nauthiz]

strangely enough i can relate to what you are saying about control etc..... i feel like my life has been limited, yet at the same time i feel like i have so my pride in myself that i cannot accept it. But the question is will i be able to over come it from the sense or pride or will it just fail.

[april abbott]

Just another one here to say I understand completely. How do you stay positive? Well, you don't stay positive all the time with a chronic illness. I agree with the others that there are a lot of ups and downs.

I am trying to recover that old me

I don't know if that is possible. I used to hope for it, to beg, plead, and pray for it. But I have had a very long journey with POTS, going from debilitated, non functioning, bed-ridden, and depressed, to finally a couple of good years where I consider myself high functioning with bad days and some infreqeunt "spells". But I am doing things that five years ago were not possible.

All I can say is that on my bad days I would feel like there was no end in sight. I would watch healthy people walk around completely oblivous to the fact that they were taking everything for granted as they strutted around so healthy and free, and I would feel so jealous, then guilty for feeling that way. On good days I had hope, on bad days I felt despair. The good news is that as time went on there were more and more good days for me. I used to lie in bed and visualize what my future would be like when I was better. I would see myself in the distant future doing something that was not currently possible, such as walking in the park, exercising, shopping, etc. This made me feel a little better, as I just kept telling myself, "One day that will be you really doing those things. It has to get better eventually."

I'm still on this journey, like most of the others here, and I can say that I can't go back to "the old me" and honestly, I don't know if I would want to. I used to wonder about the phrase "What doesn't kill you makes you stronger." I didn't understand it at all when I was really sick, and in fact, that phrase made me quite angry. I thought, "Not when you have POTS! I'm sick and I am getting weaker." I felt physcially weak, and mentally weak. But time has passed, I did live through it, and honestly, I finally understand that phrase. This illness has changed me in many ways, and while I can't say it has been pleasant(obviously I would choose to be healthy over being sick) it has taught me a lot about patience, hope, love, faith, and it has made me tougher, even if it did take a really long time.

I have learned to change my attitude about certain things. I do accept that I have limitations and I accomodate them by changing my lifestyle (it took time though). I used to hate the idea of relying on medication to be somewhat "normal", but I have accepted it and now I have become grateful that medicine out there does exist that can help me live my life. I hated doctors and doctor visits, and would nearly have a panic attack every time a checkup was due. Now I have no problems with doctors, nurses, or tests. I have learned to not sweat the small stuff. If my house is a mess, the Earth will not explode. If I need to sleep in, my family will live, etc. I have learned to swallow my pride, and ask for help from my family. I have learned patience for people that don't understand and never will. I have learned to not be embarassed about my condition, and in fact, I feel comfortable talking about it with just about anyone.

In the long run, I am still me, just a little tougher and wiser. Being ill does change you, there is no doubt, but the important thing is that you don't let it zap you of all of your hope. It sounds so cliche, but it really does need to be taken "One day at a time."

[Nauthiz]

it is definently difficult. I really have to agree about it changing you. It has made me doubt all things, and depressed me but i decided just to believe in what makes me happy. Im gonna try to restore what is normal again, but i figure ill either get it or fail, if the worst thing i can do is fail well thats where i am already lol.

[carinara]

I always try to find the blessing in every situation and crisis. And even if it might seem at first if there is none, it always turns out that there is one. Before i was sick, i took things for granted. I just got up, walked wherever i wanted. I did my sports, went on marathons and besides my full time job, i also was an aerobic instructor in the evenings. Now since iam not able to do these things anymore i look back and am thankfull that at least i once experienced these things. The memories are inside of me, i can remember them clearly, i can feel them i can even "smell" them sometimes. In my opinion every situation in life is a challenge which we can learn something out of and that nothing happens without a reason. Having this illness tought me to be thankfull for the little things in life. I get excited about silly little things now, now i appreciate situations that before i wasnt even aware of. I try to learn as much as i can out of suffering with POTS, just as if i was researching this illness in every subject to learn and help other people with my experience.

I believe this illness was given to me to teach me many things. Iam looking forward to the future and wonder if my destiny is to be healed. When and if i become healed, i will use this experience to help others who are struggling through illness.

My way of dealing with POTS didnt just happen over night either. It took many years of not knowing what was wrong with me, fighting it, and all the rest of it. Learning Is always a process. Its important to let all your feelings out, its ok to cry to even scream thats all part of dealing with this. I wish you all the best and please try to find the blessings in your current situation.

A big hug from carinara

[ramakentesh]

If I was bad all the time id struggle not to want to top myself honestly - sounds extreme but that is how bad it can be, but thankfully most of the time im ok - and i can manage the symptoms then and live as best I can. I try not to let it stop me doing that many things, although the limitations are obvious.

I used to be SUPER fit - when i got pots i couldnt handle any exercies, but walking eventually helps and i was so well last year I was running 3 kms three times a week with POTS!

hang in there - for most of us some improvement eventually arrives even without meds.

One thing to trust in is that studies are close to pinpointing the exact causes of POTS - and they are looking to be not that complicated, meaning far better treatment options may be on the horizon.