Close To Giving Up On A Normal Life

[Freaked]

Before February 2013 I had basically everything. Since then, when I got sick, I seem to have been in the process of losing things piece by piece. I was almost finished college, but I had to drop out and defer to this year. I still have two assignments that are like a month overdue due to complete brain fog and an assignment backlog from when I lost a month to fevers in February this year, and I'm hoping the college will actually accept them. Beyond that, that career is on hold.

My POTS symptoms are very severe and I'm pretty much housebound. My parents have been getting sicker and sicker of it all, and my boyfriend of five years almost broke up with me recently cos the lack of sex and doing fun stuff was making him see me as a friend, as well as the fact I had to rely on him so much. I'm trying my best now to push myself and be fun for him again, but I don't know if it will work. Next year, all but one of my good friends will be living abroad, and I won't be able to get on a plane and go see them. I write books, and I was going to head to New York to mix before i got sick. That's a very far off prospect now.

Now when I see people traveling on TV, or weddings or having kids or most things, I wonder if any of it will ever be for me. My future atm looks very small. I'm planning on setting up as a freelance proofreader and editor, but even if I had the money I can't live independently for now. I'm basically a pet. I'm wondering if I should just accept it.

[MomtoGiuliana]

2013 is not that long ago in terms of POTS. I still remember my POTS specialist telling me the average time to "recovery" for his patients was 4 years. He was from the start very sure I was going to recover. (I did recover after about a year--from bed bound to a point that I could work part-time.)

It may be that you still need to find the best treatment, and/or that your body still needs time.

I do understand how painful the loss of time and opportunity feels. I think unfortunately many of us have experienced that.

Fortunately there are a variety of treatments available that seem to help...and statistically most of us do recover from the more severe symptoms.

[Freaked]

Part of my problem is that pots is taken even less seriously here than the US, with a lot of doctors telling me it's just a 'nuisance' and if I'm that debilitated my main problem must be mental. The psychologist I've been seeing doesn't agree, of course. I haven't been able to get in touch with my specialist for months and I'd really like to try some new treatments (so far I've had no success with meds) but no doctor wants to try to help me cos they consider autonomic dysfunction to be untreatable, if they take it seriously at all. It's very frustrating.

[gjensen]

I imagine that it is frustrating, but do not give up.

You are obviously very bright, and have a lot going for you. You have a bright future, even if it does not look that way right now.

Just take it day by day. Deal with it as it comes. Do what you can do, and avoid what you cannot.

Don't try too hard concerning the relationship with your boyfriend. I know there is a lot of emotion tied up into it, but you are where you are. Right now. He has to be able to handle that. That is up to him. Not you. Right now, your concern is getting better.

I am not saying to not try to understand where he is coming from etc. Just remember and realize that your priority is to get better. A lot of emotional strife is not going to contribute to you getting better.

I think that you are going to get better, and you will have been better off for this experience. As bizarre as that sounds.

Don't worry abut the future. That is too much and out of the control of people that do not have the challenges that we do. We think that we have some control. I did. Not anymore. Only concern with yourself with the future, as far as knowing that your condition will improve.

I am sorry that you have to go through this. I wish that there was something that I could say that would change things.

[Katybug]

Here's how I see it, Freaked: There is a difference between giving up on your dreams and self-acceptance. I think to feel good about yourself, you do need to accept yourself as you are and, currently, that happens to be unwell physically. But that doesn't mean that you can't achieve all of the things you mention. You may have to find a different angle to achieve these dreams and goals, you may have to set different timelines than what you originally planned, but it doesn't mean you can't get it done. I was completely homebound 3 years ago and slowly I have improved to be able to start doing things I want and enjoy. I intend to continue to get better, one way or another, and continue to add things to the "can do" list. You're at an age when you want everything to come quickly but you have plenty of time ahead of you to accomplish everything you've been planning and things you haven't even thought of yet. Going through this experience will make you stronger and will give you gifts that you wouldn't understand if you were always in good health, like compassion and patience for others and an understanding that not all pain is visible. So I think you should accept yourself just as you are and you should forgive yourself for being sick and then you should be kind to yourself but you shouldn't settle on giving up your dreams.

[Bigskyfam]

Well said guys! To keep from losing my mind. I've adapted... I may not be able to volunteer at my kids school or attend conferences for them but you find a way to do it. I emailed and teleconferenced and make the events I can. I have a bucket list of things I'd like to do again. But grateful of what I've done so far. I do wish work came a little easier as my employers accommodations are being able to sit in between my patients. As frustrating as it is...hang in there you are not alone.

[MightyMouse]

Sadly freaked, one of my dear friends is a medical professional in the UK and ended up after years of getting nowhere with NHS, coming to the US for treatment. Even a doctor with POTS didn't get a basic standard of care for their illness via NHS. Sad statement about the UK system.

[Freaked]

Thanks for the kind words and good advice. I know I should try not to be so bleak about things; it's just hard when my parents are very negative about my illness and I feel like I've been messing up my relationship with all my health and family drama. I just desperately miss what I was and my old life, I suppose. I'll try to stay hopeful. I think I could come to accept my limitations and keep trying to gradually improve; I'm just not so sure if the people around me will be able to accept that :-/ But I suppose there isn't much I can do about that.

Edit: I'm actually in Ireland, not the UK, but the POTS situation here may actually be worse. I would definitely consider saving up to go to the US.

[looneymom]

Hi Freaked,

I know going through this must be hard for you and your parents. Being a mom and seeing my son go through this is hard. If your POTS or symptoms get worse after being sick, my advice would be to keep searching for your underlying cause. My son would get sick and his symptoms would get worse. He was not able to return to the baseline that he had been at before he got sick. I truly hope this is not what you are dealing with, if so you need to keep searching for answers.Do not give up on having a normal life. You will get there. It just takes time and finding all the pieces to your illness.

[kitt]

Perhaps it might help to seek out a group of other people with limitations, a support group of some kind but not necessarily a dysautonomia support group...Imagine that would be very hard to find except online.

Many people have limitations of various sorts and you might enjoy other people in similar situations. It may also be useful to find friends in a similar situation because I know of people in the states who have found themselves in a similar situation (living with family) and they have been able to band together and rent low income housing, an apartment or a house.

The ones that hear well answer the phone, the ones that walk well answer the door, the ones that enjoy cooking do the cooking and so on. You may be able to find someone who simply needs someone to live with them at no cost and serve as a companion. Perhaps an older person who would enjoy having a young person around!

I understand your desire and need for autonomy and I think that's an important goal...To seek a way to move out of your parents home and that alone may give you a great feeling of accomplishment.

I can't begin to predict what the future holds for any of us, but I do know that coping well beats hoping.

Good luck with this, and I'm hoping you can make some strides in meeting your goals in your current condition.

Wishing you the best!

K

[Noonoo]

Freaked, my pots came on literally overnight in March 2013, 12 weeks after giving birth. To that point I had been completely fit and healthy in a happy marriage, new home to renovate and doing really well with my career. It felt like someone had taken me overnight, robbing me of my vision of the future and the motherhood I had longed for. I was bedridden with a tiny baby, trying to breastfeed.

By June I hit rock bottom when it sunk in that this was here to stay. My sister had a sudden onset 2 years prior and, having witnessed the struggle she faced, I couldn't face my future. I got help in the form of psychotherapy while I waited for cardiologists to acknowledge what had happened to me, and he helped me to rebuild 'me'. He taught me to accept pots in my life, albeit an uninvited beast, and I learned to tame it, and live alongside it. I found that as I gained emotional strength to rebuild myself, I found strength to tackle the physical challenge of functioning with pots and my daughter. I began cardiac rehab and stated walking...all tiny steps at first and now I can jog on a treadmill for 5 mins or so. I found certain drugs helped and taking vit d and b12 shots made a massive difference. The small steps of progress empowered me and put me back in the driving seat.

By October, I started visiting work ( I'm a primary school teacher) just for an hour a week...to say hi, make tea or do paperwork and then slowy, I built it up. On tough days, I didn't go in and on good days I stayed for longer. It was a taste of the future and it did wonders for me. Likewise I began to go to play groups and I pushed myself through the bad days.

Now I'm working 2.5 days spread out through the week in an adapted role while I focus on recovery, I've managed to do so many of the things with my daughter which I felt I had been robbed of...trips to the zoo, the beach and days out with my family. Wherever I go, pots comes with me, along with a water bottle and my Nuun tabs or meds, but I'm out and functioning.

Please don't give up and don't give yourself a hard time for feeling the way you do. When life bites you, it's normal in some way to fall apart or need to grieve. I still long for the carefree life I had prior to illness but I treasure what I have now because I've been taught how precious it is. My sister too is back at work and, like me, she functions with pots in her life. Our marriages and family lives have faced huge challenge but we are on the up...you are too....you just can't see it yet. Best wishes x

[DeGenesis]

I know this is zero consolation to you, but I know many people who were afflicted with CFS/ME (of which POTS was a symptom) in the middle of their prime. One of them is now in his mid-30s, and has suffered since his mid-teens. We know so much more now than we did back then, and he has improved. He was recently promoted, and is continuing his education despite heavy brain fog.

Living with dysautonomia is not an easy life. You may recover, or you may not. You may improve, or you may not. All bets are that you will get better.

Look at it this way, you have no choice in the matter. You didn't ask to be afflicted with this illness, but you have been, and no amount of dwelling on it can change that.

I am 22, and my life has been hard from the beginning. It doesn't help when things are already going badly for you before you are even born. Long did I spend pittying myself, especially in my late-teens. All of my lost dreams. I had my life planned out. Nothing would stop me. But something had. That was the wasted time. That I had control over. If I had spent that time working towards a positive solution to my issues, I would be in a much better place now.

Suffering is relative. It is subjective and only you know how it feels to be you. I am not trying to patronize you. You don't need to lie to yourself. POTS *****. It ***** to have POTS. There is no choice but to deal with it. You might come out a lot stronger.

[DeGenesis]

I guess what I'm getting at, is that acceptance will reduce your mental suffering greatly.

Also, none of us can predict the future, and paths that we think are leading us astray might be a detour to greater things.

"

All that is gold does not glitter,
Not all those who wander are lost;
The old that is strong does not wither,
Deep roots are not reached by the frost.

From the ashes a fire shall be woken,
A light from the shadows shall spring;
Renewed shall be blade that was broken,
The crownless again shall be king.

"

This is a beautiful piece of poetry written by Tolkien for LOTR, but It is applicable to much, much more. I hope you enjoy it even a fraction as much as I do.

[Goschi]

DeGenesis, thanks so much for this wonderful poem!!!

Didn't know it, will read it again and again now, when I am feeling down!!

Pragmatic acceptance does in fact help our psychology, you are right - but poems like this one even help a thousand times more, as they give what we need: Hope and neverending power!!

[imapumpkin]

do not give up. as MomtoGiuliana said, POTS can take years to recover. I totally get where you're coming from because I too am very debilitated and I feel like my twenties have been stolen from me while I watch my peers accomplishing so many things I wish I could be doing. But having something to work towards, something to look forward to...it helps you keep going and gives you a reason to get out of bed in the morning. Who knows how you will feel in a year, or two years or five? You could be totally better. I would say definitely accept that for right now you have limitations, but accepting that this is going to be your life forever will not help recovery. Keep positive! I know it's hard, and I have to go to therapy because I'm so frustrated and sad about my situation,but believing that one day this will be behind me is a powerful motivator.

keep your chin up! you're not alone.

[Shimoda]

I truly understand the feeling. Getting through college was a nightmare. I'm very lucky I had great professors who were so accommodating and understanding.

As to the relationship aspect, I lost my longtime girlfriend, who I still miss very much, due to similar issues. It can be very hard for someone to adapt to you when you feel so terrible. I don't know what else to say but that I hope that situation goes better for you than it did for me.

That's one of the hardest things about this **** thing. All your old dreams and aspirations essentially get stomped on, to a certain degree. It's not fair, and it's exceedingly difficult. I wish you all the luck in the world. And if you ever need to vent, shoot me a message.