How Do People Rationalise The Whole Pots Thing?

[AussieOI]

I first had some POTS symptoms a few years ago for abt 6 weeks then they went away. I was sick last year with a GallBladder Bile duct/liver issue and the POTS came back at which point I was diagnosed with POTS abt 6 months ago. Again the issue seemed to disappear for months and has now returned a month or so ago.

I am now coming to the daunting realisation that yes I have an issue and it could be there off and on for many years. I would be interested to know the following:

1) When people were first diagnosed were they angry/sad and did they go through some type of grief mourning for their old life?

2) Perhaps people just see this as a temporarly blip that will go away on month or years?

3) How do you keep some perspective on things without becoming obsessed about your problem ie I can imagine that it would be easy to always think about POTS and worry about it.

I find at the moment I just concentrate on one day at a time and getting through it. I am someone who loves exploring, travelling etc and it does rather concern me that my old life might be gone for good or for at least sometime.

[Dizzysillyak]

Hi aussie,

It's interesting that your pots comes and goes months at a time. Have you seen an integrative /

functional doctor that might help you track this down via holistic and traditional testing? I'm thinking

yours could be gut related. H pylori and parasites made my oi much worse. Treating helped but I have pots daily.

I keep saying I need to re-treat these but something keeps nailing me. This time it was a flouroquinolone.

Imho, Everyone will cope with a chronic illness a little differently based on their coping skills, degree

of medical knowledge, availability of doctors who understand their illness and impact the illness has on their lifestyle

with financial impact being the most important.

But most will feel overwhelmed and greive for their former lives. For me there's a big difference

between obsessing about an illness and learning to manage it. Watching my symptoms

has led me to certain treatments. Like knowing when I need to boost my blood glucose or have more

salt or take another digestive enzyme or lay down, etc.

In some cases if you know your symptoms triggers you can avoid or treat these. Like knowing gluten

will cause me to have ataxia and myoclonus. Or soy causing phlegm. Etc.

I've been totally disabled since 1990 but didn't start trying to resolve my illness till 2005. I just

trusted my doctors and took whatever meds they gave me. I was told that there wasn't

any cure and I believed it. I didn't understand how foods and toxins could affect our bodies. Duh !

Tc .. D

[bebe127]

Aussie,

1. I was confused, angry, sad, and depressed. Those have lessened over the years, but I still have regular pity parties and breakdowns. One book that has helped me is:

http://www.amazon.com/Coping-Chronic-Illness-Migraines-Fibromyalgia/dp/0736927069/ref=sr_1_1?ie=UTF8&qid=1361810552&sr=8-1&keywords=coping+with+chronic+illness

It goes into detail about the grieving process and gives strategies for acceptance and tips on how to get back on track.

2. For me, I don't believe this is a blip sadly I think this is just something I'm going to have to learn to live with.

3. There is not a day that goes by that I am not reminded of my POTS. I cannot change my physical condition, but I can choose how I respond and react to it, and that is something that needs to be worked on daily.

Dizzysillyak, it's interesting that you mentioned food and toxins. I just ordered this book: http://www.amazon.com/Never-Be-Sick-Again-Health/dp/1558749543/ref=sr_1_1?s=books&ie=UTF8&qid=1361810805&sr=1-1&keywords=never+be+sick+again The author (MIT trained scientist) writes extensively on food and toxins. Thought you might be interested

Hoping you get some answers Aussie Most importantly, you are not alone. {{Hugs}}

Feel better

[Racer]

1) When people were first diagnosed were they angry/sad and did they go through some type of grief mourning for their old life?

I have yet to get a dx, but the positive tilt table has made me depressed, since it is forcing me to come to the realization that I have problems that I cant simply ignore anymore. Finding this forum and seeing that people experience the same things, has really helped with that!

I have been threw this many times in the past. I first learned that I had disabilities and that I was different, at the age of 6, when I was placed in special education class in school. Growing up, being surrounded by kids with various forms of disabilities, it seemed that every kids goal was to appear as normal as possible. Trying to appear normal and trying to fit in, meant no acceptance whatsoever.

When I graduated high school and entered the real world, it was sink or swim! I had to accept my disabilities and realize my limitations, real quick, inorder to find a manageable job that I could actaully excell at. Being forced to accept that I have disabilities, and being fired from multiple jobs made me really depressed. It took a couple years to fully get over the depression.

I have went threw ten jobs in ten years and now have a job that I really enjoy. Over that time I generally ignored new symptoms and the progression of symptoms. Now I am going threw acceptance all over again.

3) How do you keep some perspective on things without becoming obsessed about your problem ie I can imagine that it would be easy to always think about POTS and worry about it.

I am someone who loves exploring, travelling etc and it does rather concern me that my old life might be gone for good or for at least sometime.

I find something I really enjoy doing, and go at it 100%. For me, over the past few years, wildlife photography has been very theraputic, and nature has a way of putting everything into perspective for me. When I am out in nature, everything else is irrelevant.

You will find ways to adapt and continue the things you enjoy doing, I am sure of it! I enjoyed traveling even before I got my drivers licence. I took buses, trains, or went with groups to places.

[Aimes]

1) When people were first diagnosed were they angry/sad and did they go through some type of grief mourning for their old life?

I have had symptoms my entire life and still went through a grieving process when I was diagnosed in 2007. For me, beta blockers and calcium channel blockers did not work, so I learned to manage my symptoms without meds. I was living an amazing life and had come to terms with living with POTS. I thought at the time that I was only dealing with a disorder of blood pressure and heart rate. I was managing it beautifully. Now, after surgery, I'm realizing this isn't simply POTS for me. I'm having neurological issues and am probably dealing with something autoimmune or mast cell related (still going through testing to pinpoint the culprit). So, enter the mourning process again. What a roller coaster! I'm glad that your symptoms come and go. Mine are always present, but the severity can wax and wane. Most times, my symptoms are very manageable.

As far as learning to live with it, without becoming obsessed... this is something that comes with time. When I get really sick, I get obsessed. I scour the internet reading medical journals, studies, etc. hoping to find something that will help. I live in a rural area where doctors have never heard of POTS and give me confused looks when I see them! I think as you become more accustomed to your symptoms, you become less obsessed. I think it's important to always be aware of your symptoms and constantly learn and keep up to date on your illness, but also live your life! It's quite the balancing act!

This forum is a great place to find support. It's great to be able to chat with others who are in similar situations! My family members are amazing, but they can never truly understand what I'm going through! Best of luck to you and I hope you return to amazing health soon!

Amy

[jangle]

POTS doesn't have to rule your life. Is it painful? Yes, undoubtedly the headaches and lightheadedness are significantly debilitating. POTS is a spectrum of disease however, for me, it does present a significant challenge but it is not disabling.

One thing that must be emphasized is that it is possible to achieve symptom reduction through treatment. Fludrocortisone helped my lightheadedness to a noticeable degree. Endurance exercise if done long enough and hard enough will also make a noticeable and significant impact on your symptom intensity. The way I rationalize POTS is to think about ways and things I can do to get better. Treatments do exist, you just have to find what works for you.

[Dizzysillyak]

Thanks Bebe. I took a look at that book and just from the sections you can read for free I didn't see anything that I didn't know something about already. FWIW tho, I get irritated when I read that our attitudes can make a difference in whether or not we heal. I was being very negative about healing back in 2006 when my ataxia majically resolved and I started walking normally again after 16 1/2 years. I was totally shocked when my legs just stopped feeling like they weighed a ton each and I stopped falling into things. It was probably just from removing the gluten, etc from my diet. It certainly had nothing to do with my mental health at the time. LOL ... tc ... D

[ramakentesh]

Was fine with it until it got twice as bad...

[RichGotsPots]

I try to keep trucking. After 7 years it finally became severly limiting. And the only thing that keeps me goinf is hope. Not hope that other ppl can cope with it, but hope that ppl as bad off as me have found their primary cause. I don't think our syndrome is idiopathic, there is a direct pathology that links all of our primary causes. All these primary illness are doing damage, whether it's endothelial or small fiber neuropathy or some epigenetic change. I'm not sure the researchers will find it in the next 10 years even. But what I do know is that when I find someone in my condition, disabled for years and they find a pretty obvious primary cause and they start treating and attacking that cause, they find some relief, even if its not 100% because some damage is already done or not repairable with todays know how. That relief is my goal. Some other ppl are able to cope with treating the syndromes sysmptoms which I also have hope for but so far haven't had much luck with. But still I'm on the hunt for my primary cause and thats how I rationalize it all.

[Angela]

i havn't rationalized it yet. still exploring underlying cause as well although have found none so far....I believe for me it is autoimmune, just don't know what the trigger was for sure. waiting to find out more hopefully with 23&me in the next couple months.