POTS and depression/counseling

     Suicide awareness has been a HUGE issue in the POTS community lately.
     Unfortunately, when you live with a chronic illness, your body suffers, but so does your mind.

    Chronic illness effects every part of who you are.

    POTS specifically, as an invisible illness, can be very damaging on a person's mental state. Its hard having to alter your entire life and give up things you used to be passionate about due to your health.
POTS doesn't just go away. There's no definitive medicine that can just take away the symptoms.
So many of us live with daily:

       MIGRAINES
                      DIZZYNESS
                                   FAINTING
                    CHEST PAIN
            FATIGUE
                      NAUSEA
                  PAIN
                           HEART PALPITATIONS
           MOTION SICKNESS
                                LOW BLOOD PRESSURE
                             ETCETERA.

These symptoms aren't easy to deal with. Especially when they're happening EVERY DAY!!!
Some days, the symptoms may be worse than others. Some days, we may be very symptomatic. We may not be able to be as active as we used to be and even getting through a "lazy day" may be extremely difficult for us. Sometimes we can't concentrate.
We start to feel like LIFE IS PASSING US BY.

Other days, we may feel okay or almost "normal". We may have days where we aren't very symptomatic and can have a fairly active day without feeling too sick). This offers a wonderful "break" from our realities. But these days are cruel and bittersweet because they never last. We never know how long we have until we become symptomatic. And a taste of normal life can sometimes leave us feeling worse when our reality comes crashing back.
Another problem is that when we have good days, some people assume we're faking the bad days. They don't understand how fast our symptoms can come and go.

Because of this FAMILY AND FRIENDS MAY NOT PROVIDE A HEALTHY SUPPORT SYSTEM.

All of this together is extremely difficult to deal with. POTS is isolating. While there are AMAZING support groups online (particularly on Facebook), this illness never gets easier. Sometimes, it devours us. Sometimes we become our illness.

This is how depression begins.

The idea of facing an entire lifetime of pain is TERRIFYING.

And it's okay to be scared. POTS is scary. We are trapped in bodies that refuse to be bodies. It's hard to deal with even with a good support system. It is so important that those suffering with chronic illness get help dealing with the difficulties that come along with chronic illness.
Counseling is not the fix-all answer. But it can make a HUGE difference.


                     

When People Don't Believe...

     A few months back, I posted about my amazing work family and how my 12-18 hour a week shifts were slowly getting easier and everyone was super supportive...
          
                              DIDN'T LAST VERY LONG...

     As most people with chronic illness will tell you, having an illness, especially an INVISIBLE illness, is extremely isolating.

Within a few weeks of returning to work, I went back to my usual tasks (attending to my station, washing dishes, helping others with their stations) with minimal complaint. I always understated about how I felt on bad days, but I rarely called off work, always came in on time, and always got my job done no matter how bad I felt.

     So I thought things were going pretty well...

     FAST FORWARD TO ABOUT A MONTH AGO.
I WAS TOLD THE MOST HURTFUL THING YOU COULD SAY TO SOMEONE WITH CHRONIC ILLNESS.

     "YOU'RE USING YOUR MEDICAL ISSUES AS AN EXCUSE NOT TO WORK AS HARD."

     I could not believe my manager, who I had once respected and who had been so supportive in the beginning had said this to me.
     Not ONCE did I ever pull the sick card to get out of a task and this particular manager rarely worked with me to see exactly how much I did.
     Weeks later, this comment still bothers me. It still HURTS that she would say something so heartless.
     She made me feel like all the hard work, going home at the end of the night in intense pain, and juggling all of my other responsibilities was MEANINGLESS. I was so proud of making it through each shift without falling on my face and she took that pride and SPIT ON IT without hesitation.

     This manager had NO IDEA what I went through on a daily basis and how hard I was working NOT to hear those types of comments. And I doubt she knew how DAMAGING the remark was. But she still said it. And it still hurt.

     Then I started noticing that some of my coworkers seemed to think that my health issues were all in my head because a) I look fine (invisible illness). b) They don't understand how I can be okay one minute and then sick the next. and c) They haven't bothered to educate themselves or ask me honest questions.

Not all of my coworkers are like this. There ARE a few good ones. And I am blessed to have the support that I do.

MY POINT HERE:
If you have chronic illness, there ARE going to be people who either don't believe you or get tired of you always being sick (because apparently if you're in constant pain it is somehow more of an inconvenience to THEM than it is to YOU, the person who actually has to LIVE WITH IT.)

     I think the best method to dealing with people like this is to educate them as best you can so they don't make the same comments in the future and make someone else feel worthless. And if you can't do that, its important to know that there ARE people you can talk to (online support groups, friends, etc.).

     We work EVERYDAY to overcome our illnesses, stay positive, and get through the day.
     24 hours. 7 days a week.

AND IF OUR ILLNESS IS SOMEHOW AN INCONVENIENCE TO YOU OR YOU THINK WE EXAGGERATE OUR ILLNESS, THEN YOU DONT NEED TO BE IN OUR LIVES. Because odds are, you know nothing.

END OF STORY.

WORKING WITH POTS

      As some of you know, I returned to work a couple of weeks ago. Since I am a full time biology major at a University and my job can be very draining, I am only working two six hour shifts each week.
I'll be honest; a 12-hour paycheck sucks. It's not enough money for the amount of effort it takes to survive those hours. But, on the other hand, I know what I can handle and surviving those 12 hours every week is a huge accomplishment.

     I work in the hot foods department of a grocery store, which means I'm on my feet all day in a hot kitchen, moving around a lot, lifting, etc. It's not easy. My first week back, I had horrible palpitations all day, felt absolutely nauseas and horrible, and got lightheaded several times
                                      BUT THERE IS HOPE !!!!

Now, a couple weeks later, I am able to fully go through my shift without any major problems. I still get lightheaded sometimes, but my body is getting more used to staying vertical longer. Going back to work has really helped me learn how to handle the symptoms that go along with this syndrome.

I won't lie and say that everything is easy and perfect. There are days when I feel absolutely horrible and question whether or not I can get through my shift and stay vertical the entire time. And it can be scary. Luckily the people I work with are absolutely amazing and keep a good eye on me.

My work mates are pretty much family at this point and they have been SO supportive. My bosses are amazing. And I cannot imagine that I would have been able to do this if everyone was not so awesome. They have all asked questions about POTS and tried to learn a little bit about it and I feel so blessed to have such a great group of people around me. Of course, they too have their moments and there are times we would like to rip each other's throats out, but I never doubt that they are 100% supportive and understanding.

TIPS TO GET THROUGH WORK:
~ Try to get accommodations (like a chair, if you don't already have one.)
~ Keep water with you at all times (I had to get permission to keep water with me since I work in a kitchen and you're not supposed to have personal food/drinks. So talk to your management.)
~Have something to keep track of pulse and/or blood pressure
~Always keep salt packets on hand (I have a little travelling salt shaker)
~Make sure you take your breaks spaced equally apart. This will make the day easier, trust me.
~Compression stockings, okay?
~EDUCATE YOUR COWORKERS
~Try to take it easier until you get back in the swing of things
~Don't be afraid to tell people when you're feeling sick
~Know your limits
~DON'T SWEAT THE SMALL STUFF
~Gatorade

MY STORY - POTS

     My name is Jamielynn and I've been having symptoms of POTS since I was about 15 years old. I'm 21 now and I was just officially diagnosed in December 2014.

When I was around 15 years old, I started having really bad headaches. They were absolutely horrible and would last for WEEKS without getting better. The same year, I passed out for the first time. Down a flight of steps. Face-first into the wall at the bottom.

I went to see a neurologist and was told that this was "normal" for girls my age and to STOP eating sodium to ease the headaches.

I continued to have headaches daily. The fainting episodes continued, luckily not very often. I learned to live with the headaches and my life wasn't really any different. I could usually feel when I was going to pass out and felt as though I had a good handle on it.

In January of 2014 I was having more problems with the headaches, pain throughout my body, and horrible nausea and occasional chest pain. Doctors said nothing was wrong.

In August 2014, I woke up one morning and felt extremely nauseous and dizzy. My chest was hurting and I felt unsteady whenever I stood. I went to the ER several times and the doctors all told me it was anxiety or there was nothing wrong. My regular doctor tried to push antidepressants and said 99% of my problems would go away if my depression went away (I'm seeing a counselor and doing better. She still believes my POTS diagnosis is wrong).

Finally, one day my mom and I were at the movie theatre watching The Giver (which I had been waiting FOREVER to see) and my neck and shoulders started hurting really bad. I tried to ignore it. Suddenly the chest pain started and I got a numb feeling radiating throughout my entire body. It was scary. I didn't know what was happening to me.

We went to the ER where the doctor told me I was fine. He said it was all in my head and I should just stay in bed until I felt better. We had enough. On August 16th (my 21st birthday...) my mom took me to UH hospital in Cleveland. Neurologists did some tests, I passed out, and they put me in the hospital for three days. The doctor there believed I had POTS. He told me to drink water and Gatorade and increase my salt intake until I saw the neurologist specializing in POTS in December.

The semester went by so slowly. It was torture. I was trying to learn how to work around this illness, keep my grades up, and have a normal life. It was frustrating. And it still is. But I got through it. I had my Tilt Table Test (POTS initiation, basically) and got my official diagnosis. I'm working on managing my illness and attempting to go back to work next week.

This illness has been a crazy experience so far. I never know what to expect with each passing day and I haven't really felt 'good' since my flare in August. But, honestly, it's taught me a lot about myself. I've learned to be more grateful and thankful for what I have. And I've made some AMAZING friends through Facebook support groups and on Twitter.

WHAT IS POTS ??

Pots are something you cook with. They come in handy for cooking pastas and are commonly sold in sets with pans. See below:                                            

 

 

 

No, but seriously; POTS stands for Postural Orthostatic Tachycardia Syndrome and it is a not-so-rare, commonly misdiagnosed invisible illness.

POTS is commonly misdiagnosed because many of its symptoms are very similar to other illnesses such as anxiety, etc. The symptoms commonly include, but are not limited to:

• Dizziness
• Fainting
• Migraine/headaches
• Heat/cold sensitivity
• Chest pain
• Palpitations
• numbness/tingling in arms/legs
• Vision changes
• abdominal pain
• nausea
• brain fog

These symptoms are caused by the dysfunction of the autonomic nervous system (the system that regulates all the things you DON'T control such as heart rate).

When A person with POTS stands, their blood circulation does not correct itself and their blood pressure drops. Their heart rate then increases to make up for this. This causes extreme dizziness and sometimes fainting. POTS patients frequently increase their fluid intake to increase blood volume and also increase their salt intake to help retain water. 

 

Every POTS case and its severity is different. Some sufferers live normal, active lives, while on the other end of the spectrum, some patients may be bedridden or unable to walk for varying lengths of times. Unfortunately there is currently no cure for POTS and many patients try a variety of medications in order to control their symptoms.