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Reality Of How Much This Illness Can Take Away From You.


hippychic258
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As I look back at the past 8 months of my life since getting this flare I realize how much life I have missed out on and how much this illness has taken away. I am sure all of us have missed and lost so much of life , and it just seems so unfair but I am still hoping that this has all happened for a reason and there will be better days ahead we have to keep believing this right? It is very hard for me right now, I had a life long dream since 7th grade ( I know we all have had dreams) to own a salon and at age 38 I did it and I loved it, it was more like a hobby than a job for the past 8 years I was living my dream. Well since I have been sick I can no longer run a business so I have to sell it I received an offer today and the reality has just hit me really hard, yes that dream is soon to be gone. I am grateful that I a ;east was able to enjoy it for 8 years.

This illness is so hard and I feel for every single person who has to live with this, I am sorry for everyone who has lost a part of there self and there life because of this. I am so thankful for this forum for the support, information and advice!

Just having a rough time with all this right now and just needed to vent a little.

I am trying to keep faith and hope, God has to have something better for all of us don't you think, I try to believe this is a bump in the road to make me a better person and hopefully one day have a better life ahead.

I pray for everyone every night to get relief for this illness!!

Pam

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So sorry. I hope you do feel some sense of pride in yourself that you set a goal and made it happen. So many never do that. I hope and pray that the same drive you had to open your salon will also get you through this very long flare and through the rest of your life. I know it is hard. So hard giving up on things that bring us so much joy but maybe you can find another way to create. Maybe something you can do at home, even in bed on those bad days.There is a website my daughter uses often, she is on disabiltiy due to chronic fatigue and fibromyalgia...called ETSY. You can make things and sell it on there. Since she has been on disabiltiy she has been able to develop her own little craft and make a little spending money, plus makes her feel she is still trying.

Stay strong, don't give up.

I am very proud of you. my dream was to own a salon too. I got my license to do hair, worked for a short time and then became a stay at home mom. But my health has always been poor, would have never made it long standing behind a chair doing hair all day. Hats off to you.

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I wonder if with some brainstorming there is a way you could still keep some if your dream alive?

I don't know all that goes in to owning a salon, I'm sure it's very active hairstylists are always standing, plus with scheduling & book keeping.

Like could you order magazines for them? Or write a newsletter, a blog? Something to keep you involved

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Hi Pam.

I'm so sorry you're having such a hard time emotionally at the moment. Those times of looking back and seeing what we've missed out on are so incredibly hard.

My life is nothing like I had planned, I got ill at aged 17, at a time when I had just started to enjoy the independence of soon becoming an adult. I had firm plans to become a child behavioural therapist, was keen to have children of my own in time, and was loving life doing exercise classes and going out socially with my friends. Then I became ill, and gradually I had to let go of each of those things and plans. I had some amazing luck though, and met my now husband in an online support group. I never got to have children, but when I married my husband I gained a wonderful step daughter who I can't imagine loving more if she was my own. My best friend is someone that I also met online, 6 years ago and we've barely gone a day of not catching up with eachother despite never having met eachother. I had to ditch my career dreams, but now have a job that I do from home laying down (no, I'm not a prostitute :P ) I taught myself a new skill and am now a freelance cartoonist, laying down to draw using a tablet and stylus.

I really do believe that good things can come from bad situations, and I really hope that some good things can come along for you soon out of your illness too Pam. Those dreams and plans are so hard to let go of. I really hope that you get some good luck soon too. Thinking of you. x

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I am very similar to you too Pam, at 24 i started my own business and was doing really well and actually turning down work even with a credid crunch! I gave up work a year ago, had to move back to my parents, put my belongins in storage, and lose my business and my own house. All very sad, but this year i have excepted it and am in the process of writing a book based on my experiences with my old business and looking at part time work i can manage from home. Is it what i really wanted to be doing at 29? No.... But my saying is, it is what it is!!!! I have tortured myself this year that i am not better despite taking 4 years for a Dx, and in desperation to get my "old" llife back i have stupidly taken drug after drug with no breaks and side effects that have only made my heart rate worse! I am slowing off on the meds for now and concentrating on positive things i can manage.

Have you thought about wig making? Or semi permanent make up? Its a skill that there is a demand for. Or how about working part time from home could that be an option, what about sitting down to do hair extensions? Instead of being a mobile hairdresser could some of your old clients come to you. My hairdresser sits on a stool when she does my hair. I also used to be a beauty therapist and a there are a lot of beauty treatments i would do from home sitting down. But i dont know how bad you are, sometimes its not just the sitting down its the socialising, having to deal with people thats the hardest thing when you feel so sick.

Things will get better, you must think that way even though i know it doesnt feel like that now

i notice you say on your profile no drugs. Is this becuase in your case they have not helped?

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POTS is a double and triple whammy illness, if i can use absurd language.

I definitely believe that it is mentally harder to live with than physical as bad as that is.

Also people with POTS frequently dont look sick, and people can assume theyre just lazy.

And then the physicians we run into who have never heard of it. They think you have anxiety

which can be humiliating.

The only "vacation" i seem to get from it is in the pool. The cold water and compression and endorphins make me feel normal for an hour.

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Thanks for all the comments and support!

I am totally bedridden right now just able to walk 6 steps to go to the bathroom. I am so sensitive I can't have a conversation for longer than 10 minutes so most of the suggestions are impossible right now, but they are great ideas and hopefully one day I will be able to do them.

I do make jewelry I have made it for years and sold it in the salon and a boutique here in town and have done quite well. I also started an Etsy store online in April. So when I am able I work on that but some days am not able to even do that.

I am going to do a saliva test to check all my hormone levels, I have 90% of all the adrenal fatigue symptoms low cortisol and some low aldosterone symptoms as well, when I got this flare I was in major stress for about 7 months so its possible. I can't stand for long ( like 1 minute ) without vibrating sensations in my body and head, weird huh?

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This condition is probably one of the hardest mentally to deal with. (ditto Spinner) My PCP once compared me to one of his breast cancer patients and told me about how despite her condition she was able to go whitewater rafting and hiking, etc. Bless his heart. He was trying to encourage me to move forward but even though he has worked to study this to help me. (I'm his only POtS Pt) he simply doesn't understand. We not only have the physical ailments but are running at times on one cylinder of a brain while most everyone else (even those with tough chronic conditions and life threatening conditions) are running w a 4 cylinder brain. This is the part that no one - even most autonomic specialists- don't realize.

Hippy, thanks for sharing your "loss of a dream" with us. I think we all can relate. I am so encouraged by many of the comments above about finding the good in the midst of our trials and suffering.

Today I live a much simpler life. I spend more time than I would like concentrating on how to breathe and not as much time as I would like caring for others and/or getting tasks done. A year ago I was CEO of our family's IT Mangement and Security company, taking care of 4 kids and active in numerous community events and church activities. Obviously I am now unable to work, have very limited driving ability and often have to depend on others to take care of the kids and run the office.

Now, It is a good day when I can sit at the family dinner table and enjoy their company without cringing at the many sounds, pitches

and conversations. It is a good day when I can spend my rest time in the recliner and not flat out in bed, and it is a good day when I don't have to hold on to the walls to get around. I feel so dependent on God for my every need and care and I do put my faith and

trust in Him as I walk through this journey.

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Hi Pam. Just try to keep smiling even through the tough days. I had to quit my teaching job so I could take care of my 12 year old son who has pots. Like you, he was beridden for the first five months after his diagnosis from MAYO. My husband and I still don't understand all of the strange symptoms that have appeared since he was diagnosised. We take it one day at a time and try and keep our thoughts positive. I know you must miss working. Is there a way you could work from you home and maybe set up a few hours a day? POTS seems to steal your life away. My whole family wonders if it will ever be normal around our house again. The best advice I can give you is to listen to your body and realize your limits. Energy and stamina will come if you don't overdo it. My son and I have learned and are still learning a lot of lessons the hard way. Hang in there. Praying for you.

Edited by corina
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I'm so sorry for your loss and for your challenges with POTS right now. I went through a stage, that lasted over a year, of being disabled, including bedridden, barely able to move. It was really scary and I wondered if I could ever recover. I did recover however, enough to resume a fairly normal life. I hope this will happen for you too. It took about 3-4 yrs for me to feel I was "recovered".

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Hi Pam,

I totally understand & sympathethize. I am 35, & my illness has been progressing over the past 5 yrs.

I went to 4 yrs of nursing school, worked for almost 10, & now have had to give up my license b/c I can't work. It is so discouraging & frustrating, esp when I haven't even paid my school loan off yet.

Just know you're not alone, & I'm grateful to not be in this alone too-it helps to have this forum!

Take care,

Danielle

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  • 2 weeks later...

Yes. It's true, it takes away so many of the best bits of life. I feel like my career has stalled when it should be flying. I want to experience life fully, not through a fatigue of fog and dizzy craziness. I want to have some energy for my kids and my husband. To get things done around here and to be able to start a job and finish it all in one go.

About a year before I was diagnosed my cousin's husband had an accident on the rugby field, it broke his neck and now he is a quadriplegic. I have some very crap days and when I do, I try to think of him and how lucky I am to be able to hug my children still. To feel the warmth of my husband in bed beside me and be able to feed myself, toilet myself and dress myself. Even if it is slow, painful or totally frustrating. I have lost much, but not as much as could be lost. I don't think we have to be grateful for losing what we have lost, that kind of 'graciousness' is beyond me! But I am grateful for all the things I have still. I hope that you find some things to bring sunshine back into your world. B)

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Thank you so much for all the kind words!!!! I am grateful for what I have and still can do, even though its not much it is more than what some people can do. I keep telling myself it could always be worse and it can always get better. It just really stinks most of the time.

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I've had autonomic issues (purely POTS - so far) since 2005; I am 51. During that time, I have been able to continue working, although during flare-ups, (such as May-September were for me), I have had to get help from my wife driving me pretty much everywhere.

I am blessed in that as a software engineer, I can do almost all my work while sitting with a laptop laying in bed, or sitting up in a chair with a hassock, or talking on the phone or video-conferencing with people from work. As a result, even on the worst days I can continue working, I have been able to fulfill a 'provider role' in my marriage - which has meant so much emotionally to me. I credit this success to first, being lucky in choosing a profession where this was possible, and second, working my tail off all my early career to be seen as a really valued employee so I am considered worth my job and salary even with my odd schedule and working conditions.

I hope it doesn't come off as sounding quaint and outdated, but when this disease stripped so much from my life, I find being able to cling to this gender-based traditional 'male provider role' has allowed me to retain some dignity with this disease. I look to that as me providing value to my wife, even though we take only local road trips for weekend/week-long getaways (air travel is horrible for me) and I am not often able to go out to dinners being tired in the evening. But we find ways to manage - I'll choose to work on a Saturday so I can have a mid-week day off with her and we go out to eat at a nice place during lunch and tell them to please 'hurry' with the food so we aren't sitting there too long - and the place stays quieter. We go to a local drive-in to see lots of films, so I can be leaning back in the seat, feet up on the dashboard of the car. Similarly, some other aspects of our relationship are impacted as well because of this disorder, and we creatively find ways to address those. Again, I am blessed with an amazing wife.

In a very real way my goals in life have really narrowed down to one, focused thing: I will show my wife that while I am not able to do everything I could when we first married, that I am still doing everything I can. If I have a 'good POTS day' we take it. A couple of years ago, I was blessed with a good POTS week - not sure why it happened - but it was as if I didn't even have POTS that week! I drove us everywhere, we went to a beach hotel nearby, walked all about, etc. If I could somehow figure out what happened that week, I would repeat it. The point is - I took advantage of it.

I think if we all challenge ourselves to do everything we can possibly do - and be satisfied we put all the effort we had in it - that we can be okay with ourselves. Rather than measure against a 'normal' life - measure yourself against 'did you make the most of what you can do today?'

This is how I make my peace with God as well: I realize that it is VERY unlikely this disorder will EVER go away, and for all I know, it will get worse and worse over time. But, none of us get to choose our circumstances. Some are born in America. Some are born in Somalia. Some are born wealthy, some poor. Some have great health, we have rotten health. I think God wants us to show what we do to lead a proper life in the circumstances in which we are placed, and simply asks us to show love and kindness to each other -- and to do what we can.

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Yes this illness has taken a lot away from me. I've been sick my whole life, but it got bad about 12 years ago. I know that docs aren't going to help me anymore. I've been doing the natural and conventional medicine route for over 8 years now. I ran from doc to doc looking for a breakthrough. Looking for a lab test to finally show something. I'm done. I'm not telling others to do this. Just telling you where I am at right now.

Within the last few months, I accepted Jesus as my Savior and healer, so that is where I am at. It's gonna be amazing when the biggest curse in my life will become the biggest blessing and miracle! :) <3

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