Hardest Thing You Have Ever Dealt With?

[kayjay]

My Dad's cousin had ALS and I used to volunteer for hospice. When I get really frustrated by what I have medically, I often thank God for what I don't have and that I am alive.

I have been sick for a long time and have been bedridden at times. I would be lying if I didn't have days ( weeks, years LOL) when I feel sorry for myself. I do know that some good things have happened in my life because of my illness.

I look back and realized that my health issues as a teen were most likely POTS rearing its ugly head but I really became very sick in my twenties.

It sounds lame but I really believe on some level everyone faces real hardships at some time or another. I think most days that God has allowed this burden in my life and as much as I wish it would go away, I am not sure that I would every trade my hardships for someone else's.

One thing that helps me is to try and not think too far ahead. If I thought of being sick every day for the rest of my life I would be so sad! None of us knows what tomorrow will bring.

Thanks for sharing! I think most of us relate to how you feel.

[Maiysa]

And after all my positive talk and hopes of trying something new today, like Tai Chi, it didn't happen. Ah, nuts! I ate some fish and I had some strange reaction and now a fever again and am now bed bound since my blood pressure is all over the place and can't stand up. Also having strange heart rates that are scaring me a bit and causing some anxiety. Somedays I think oh, it's going to fine, but then days like this....sort of crappy, but I'm still hopeful even though it was my second day out of the house since December 27th. Maybe tomorrow will be better. Somedays are just like this. What do ya do? Sorry if I'm whining. And I have to say, hats off to you girls with little ones. I think of you all often and how hard that must be. I have 2 college students at home and that's enough, not sure how I would handle little ones. You girls are always in my thoughts on those tough days.

PS It was nice to hear people's stories although they were hard, it's interesting to hear how everyone deals with this and thanks all for sharing.

[Ernie]

Hi,

I had a colorful life so far. What I find most difficult is facing death on a regular basis. For example, in 2007, I almost died twice at the hospital because the doctors gave me the wrong medication. Other time, it's because I faint on the street and cars are almost running over me.

So, I take my life one day at a time, appreciating the fact that I am still alive and that I have a tolerable life.

[jangle]

Having POTS is the most difficult thing I've had to deal with. It really ***** and hurts even worse that there doesn't seem to be a lot of knowledge on the subject. However there are far worse things in life soit is a matter of perspective

Edited January 19, 2012 by MomtoGiuliana

[brethor9]

I thought being the mother of an autistic child would be the hardest thing I would ever have to deal with......who would have thought that would now be a close second. My mother keeps telling me God gives you what you can handle....I have learned to handle the autism but this illness I am having a really difficult time mastering because it takes my focus off of whats the most important....making sure my son gets proper care and that I can continue being his biggest advocate I feel really robbed sometimes....

Bren

[Maiysa]

Bren, I didn't know you have an autistic child and with your condition it must be very difficult. My sister was autistic. I know how difficult it can be. Bless your heart. Sending you a big hug.

[targs66]

It's definitely the hardest thing I've ever dealt with, because I feel like I've coped in some way or another with all other hardships I've faced, and I don't feel like I'm coping with this. I was always utterly exhausted, but managed to push myself enough to hold down a demanding job, move to NYC with barely any money and work my way up the very difficult ladder of the entertainment industry until I was able to buy my own (tiny) house in Queens. Now I can barely manage a trip to the local grocery store. I used to walk all the time - to the subway, through the city, etc. - and a walk can be torture now because of the dizziness. When I'm in the car, I watch people walking and remember what it feels like to be strong and capable, and I'm so sad that I'm so weak now.

But I know other people have it worse, much worse. On my best days, I have a faint hope that something can be done for me and that someday I'll see some improvement. My beloved younger brother has MS - he doesn't have that hope to cling to, and it breaks my heart.

I'm sorry to be negative, but I appreciate having the opportunity to rage and vent a bit. Yes, for me, this is the hardest thing I've ever dealt with.

[brethor9]

Thank you! Maiysa......it is difficult but I wouldnt trade him for the world....he is my heart and soul ....... hope you are doing well!

Hugs

Bren

[chipper]

Dysautonomia and inner ear dysfunction is the hardest by far. Losing loved ones is painful, but not being able to care for them or really experience the great parts of life takes a toll. Heaven is what gets me though all of it.

[Maiysa]

Bren, I agree. My sister is like an angel and is so pure. I imagine it is probably even more so with your own children. Thank for the well wishes.

[Allene]

I'd have to say that dysautonomia is the second most difficult thing I have to deal with. First would be depression. Even when I was a normal, healthy person with a great family and friends, no worries at all, I felt like life wasn't worth living. I know I have it great still, and I still struggle to see the value in my own life. The most difficult thing in the world is knowing you have everything you could possibly want, and being unable to feel happy about it.

[bkweavers]

Dani - it was like you were reading my mind recently! I'm the mom of a POTS kid so I don't suffer myself but I would take it from her in an instant if I could. She became ill at such an early age and was debilitated for so long. Then, she was almost back to normal for a year and now for the last 3 months, it's been a downward spiral! In some ways, this illness is more difficult than things like cancer. People understand cancer, know exactly what doctor to go to, have a plan of treatment and go from there. Obviously, cancer is life-threatening whereas this isn't but it's difficult in other ways. My daughter's body just seems to be turning against her. Once again, she's so dizzy that she can only sit up for 30 minutes at a time. Her headaches are bad as well as insomnia. She's 15 yrs. old and she shouldn't be hanging out at home all the time feeling miserable! My mother heart just can't take much more of this! I feel like once again, everyone else is living their lives and planning and we're sitting here waiting for the day she'll feel better. I get upset at people who complain about little things and feel like most people just have no idea what our family is going through.

[puppylove]

I understand what you are saying, but I don't think having POTS is more difficult than cancer in any way. I am very thankful that I don't have a potentially fatal disease, even though POTS makes me miserable on a daily basis. Cancer is normally "quicker" than POTS and there is so much more info on it but I don't have to live in fear everyday that I might be killed by this syndrome or that cancer might come back.

[icesktr189]

I understand what you are saying, but I don't think having POTS is more difficult than cancer in any way. I am very thankful that I don't have a potentially fatal disease, even though POTS makes me miserable on a daily basis. Cancer is normally "quicker" than POTS and there is so much more info on it but I don't have to live in fear everyday that I might be killed by this syndrome or that cancer might come back.

I think what she meant by cancer is that she wants POTS to be a reconized illness, not one where doctors have no clue what to do with you when you finally get diagnosed. There is so much media coverage, sources and treatment plans, whearas with POTS and Dysautonomnia, it is almost existent. I dont think she means her daughter would rather have cancer, just that we wish it had a definite treatment plan and people didnt look at you crazy when you tell that what you have.

[puppylove]

Oh, ok sorry. I didn't understand.

[jenglynn]

I am sure none of us would prefer that we (or one of our family members) would have cancer. But actually DEALING with P.O.T.S/Autonomic Dysfunction/Dysanonmia can be so frustrating. From the very beginning, the diagnosis is so frustrating. How many of us went in at the beginning at were NOT told that we didn't have anxiety or depression? Before I was diagnosed with P.O.T.S, I was diagnosed with anxiety, depression, adult onset asthma and an inner ear infection (because of my syncope). It wasn't until I wore a Holter Monitor that showed multiple episodes of sinus tachycardia. So then, three months later, they FINALLY started looking more in the right direction. Eventually, I was diagnosed with P.O.T.S after a stress test (which I collapsed on the treadmill) and a positive TTT. But this was months later. I started having such shortness of breath and was constantly told it was anxiety... and I could remember the EXACT day that I started having the shortness of breath- it happened suddenly. Yes, I had anxiety but that didn't come until AFTER the other symptoms. Of course I was anxious... I am fainting and can't breathe!!!!

My symptoms just got worse week after week and by November (first syncopal event of this flare was in April) my BP was plummeting and I was having 20+ syncopal episodes a day and have had 7 concussions. I was in the hospital from Thanksgiving to New Years. At Mayo for three weeks- the other at my local hospital. With a consultation at UW-Madison- Even at Mayo, they can't "fix" me. I am no better now than I was when I was admitted. They came up with some diagnosis' but can't put the puzzle together. They tried IVIG which failed miserably and put me in a terrible rejection and now I feel like I have taken 10 steps back. Now my blood count is showing it... organs are not working properly. Syncope, HR, OH is no different. Other symptoms have appeared.

I am not saying I would rather have cancer- I would NEVER say that. I have nothing but sympathy for anyone in that position or a life threatening disease of any kind. I just get frustrated with the LACK of answers. The LACK of doctors who take an interest in the condition. The doctors who instead of taking it upon themselves to do some research on the HUGE amount of research that is out there to help us, instead they just dismiss us completely. Because it is not one of those conditions that is obvious to others, it is often ignored by our loved ones. So many people do not understand ( DOCTORS don't get it, let alone just the average person) so we are often treated with disrespect, as if we are lazy, unmotivated, or hypochodriacs. Many people go through their lives with this debilitating illness alone, without anyone to rely on (I am one of the blessed ones who does not have this worry) but MANY do. "What do you MEAN, you can't stand up for very long? What do you MEAN that your HR goes up because you sit up too long? Why do you mean that you need so much salt? What do you MEAN that you are so tired you can't get out of bed in the morning? What do you MEAN that your whole body hurts because of something called the 'autonomic nervous system.'? What does that even MEAN????" I could go on and on.

I think this illness is just so hard because there is just such a little understanding among just about everyone. Every time we go to the doctor we have to repeat ourselves for the millionth time and by the time we get to the actual appt. all of the time has been used by trying to explain something that should already be understood!!! I personally go to several specialists and it shouldn't be MY job to keep them all informed but that is usually what happens. When I go to multiple hospital systems, it is even worse. I have Care Coordinators at both places but I do 90% of the work. No one communicates. It is an exhausting enough condition to deal with on a daily basis, but to try to manage all of the details and administrative work that goes along with coordinating it all makes it all the more exhausting. We are very sick. We are all sick in different ways. None of us has the same symptoms or story. But we don't have the support systems that people with diabetes, cancer, strokes, heart disease, etc.. have (except for this one ) We don't have the doctors to support us with so many options of treatment. We don't have NEARLY the options of treatment or doctors. We pretty much get what we get.

So I would never say I would prefer to have cancer. But at least with cancer, there are options. There is a clear place to go once diagnosed. There is a clear plan of treatment. Usually, there are clear odds of recovery. Cancer would be a horrible tragedy for anyone or any family to deal with. But our condition has its own struggles and difficulties that I think are quite unique. How often do you try to explain to someone what is "wrong" with you? How do you explain everything that goes along with it? I was discharged from Mayo with the words "Medical Enigma" on my discharge papers. After all of that treatment, testing and two weeks in the hospital... I was diagnosed, given a possible treatment which made me much more sick than I was when I went in) and no real answers. Talked to my doctor last week and he told me that he is "working" on more options but he is not sure what else he could do. I feel like my life is in limbo and am not sure how to move forward with a life in which I can't walk, stand, drive, have to crawl if I must get out of bed, have cognitive difficulties made worse by my 6 or 7 concussions. I am disabled but have no idea if I will ever get better. I can't take the chance of syncope- even with my helmet- because more concussions cannot be prevented from a helmet and if I want to remain "me" all of the doctors have told me this MUST be my top priority.

We ALL have a difficult situation. We all have our daily suffering. Everyone with a chronic or life- threatening disease has a battle they are facing. I just pray that we all get better soon and that the medical community starts to take our condition more seriously. It really is exhausted to live in this constant state of no answers, no help, and a lack of understanding by most everyone.

Love and Prayers to us all,

Jen

[puppylove]

I completely agree. Dealing with this has been awful- sorry if I seemed like I was belittling it. I was definitely not trying to do that!

[icesktr189]

Oh, ok sorry. I didn't understand.

Oh dont be sorry! I was just trying to write what I think she meant I am definently happy I dont have cancer and would chose POTS over a life threatning illness anyday, but you still have to deal with what comes with it

[jenglynn]

Oh, of course, no need to be sorry. Of course, I think we all agree that any life threatening illness, not only to experience it ourselves, but to watch any of our family members suffer through it, would be tragic. I am glad you brought it up because it makes it us realize that things can always be worse or harder for someone else. I just wanted to relate how difficult my experience has been- not trying to compare the difficulty to cancer- other than to say that there is not a specific protocol for our condition the way that many other illnesses have.

Jen

[brethor9]

Oh Jen Bless your heart!!! I sooo agree with what you said.....I couldnt have said it better or with such eloquence thank you for that........

Hugs )))

Bren

[sandymbme]

For me, going through the breakdown of my marriage and subsequent divorce, after getting sick, was worse than getting sick itself. Not that POTS isn't life altering, because it certainly is. But it has actually brought some really great, positive changes in my life. It forced me to finally start valuing myself, and to finally address why I continually ended up in unhealthy, abusive, destructive situations. There are days when the pain and illness are almost more than I can bear, certainly. These days I seem to just collect more and more diagnoses. But in being forced to finally get healed emotionally (with a couple of years of hardcore, intense, and often painful therapy) I finally learned why I kept repeating the same mistakes. And I was taught how to identify characteristics in people that indicate trustworthiness, caring, concern for my well-being, and the ability to offer and give real support. So in many ways because I got sick, my life is so much better. I don't know if I would have ever gone through the therapy, or made the commitments to self-care that I did, had my physical state not forced my hand. I just did not have an iota of energy to waste on being self-destructive anymore.

On the other hand, the divorce completely broke me, and made me feel like an utter failure. I don't know why entirely, but I was convinced that the success of my marriage was my responsibility. So when he asked me for a divorce, after just 16 months of marriage, I felt like such a horrific failure. I now feel truly blessed, every day I wake up and thank God for how very richly blessed I am. I have an amazing support system, the best friends and family anyone could ask for. And in October I get to marry a man who was brave enough to not only wade through all of my fear and baggage, but is able and willing to take care of me. I never dreamed I would be so lucky. The irony (to me anyway!) is that when I was healthy I wouldn't have given him a second thought. He is "too nice", stable, responsible, only an inch and a half taller than me and I liked really tall guys. With my new perspective, I treasure him for the rare, wonderful man he is. So I am not trying to preach, but I think you can look at POTS, and any other illnesses you may have, and think of it as the worst thing to happen to you. And it is perfectly true. I believe that on some level you have to mourn the life you expected to have.

I also think that being sick does not have to preclude you from having joy and fulfillment it your life. In many ways, especially since this is a condition that many of us, (like myself) are stuck with, it can make your life feel a lot happier if you try to focus on what's great about your life now, and what you have in your life right now, challenges and all, that makes you happy. For instance, I was initially heartbroken when I realized I was not ever going back to work again. But one day it occurred to me that without the need to be "professional" I could do all the wild and crazy punk rock things with my appearance that I had to give up when I decided to grow up and get a real job. At this very moment my hair is primarily cherry red with blue-black streaks woven through it. That will certainly NOT be the answer for everyone, but being able to do crazy stuff with my appearance that I haven't been able to for years, gave me something about my illness to truly celebratte!

Sandy

[jenglynn]

Bren,

Thank you so much for the compliment I know I certainly don't speak for everyone, but it is nice that sometimes my words and experiences can express how someone else may be feeling.

Sandy,

As sorry I am that your marriage ended in divorce, I am happy to hear that you found the positive in your condition and realized that life is precious and all the more precious when we suffer from an illness. I congratulate you greatly on your new found love and upcoming marraige and I wish you all the happiness in the world. I really love your positive attitude and even if you can't work you were able to find the positive and a way to make it fun and to realize a dream you've always had.

I have had a VERY hard time dealing with accepting my illness. It hasn't been long (diagnosed in August 2011) but the severity has progressed quickly and I have gotten to the point of being bedbound and disabled by November. I am still struggling but I have decided that there is a LOT I need to learn about WHY I was "chosen" to have this condition and how grateful I am to my loving husband to is always there for me to hold me, help me, and advocate for me. I also have a lot of friends and families who are amazing support. So my New Years Resolution was to begin Gratitude Journals to write in daily and it has helped me immensely in recognition of what is POSITIVE in my life and not only what is positive in my life that WAS there... but what my life has become. The title of my journals: Gratitude Journal (General gratitude- everyday life) Family Journal (This journal is devoted to being grateful to all the help and support I get from my family, especially my husband who is the one one does the most. He went from having a wife who did everything to a wife who can do nothing- we have SIX children and a very busy, chaotic life. His life has changed as much as mine. I tend to expect things to be the way before and I have to accept that will never be. He is never going to do things the way I want them done. I have to realize he is doing everything with one parent instead of two. So this journal is especially devoted to finding ways to appreciate everything he (and other family members) do to help me and make my life is made easier and happier. This has helped a LOT in me realizing how MUCH he does actually do- and at the end of the day when I write in my journal, I am always happy to give him a big hug and kiss and a thank you for everything. Last Journal I call the Challenge Journal: (This journal is dedicated solely to our illnesses and conditions and what I have learned from going through this, things that may have made me grateful, and how life's priorities has changed for me. My perspective is a lot different than it used to be. My VERY first entry was this: I realized that before as a busy working mom who did everything... would come home, fix dinner, help with homework, laundry, housework, etc.... and with six kids there was always someone wanting to tell me things and ask questions.. and more often than not I would listen halfway or tell them: "Okay, after I finish A, B and C we will talk" because I was just so busy. Now, (unfortunately or not) most of my time is spent on the couch or bed and I have all the time in the world to talk to my kids... and I have to say I am so much closer to each of them since the illness began. I am not sure that would have happened without it. I am not sure the kids would agree as much- because I know they miss their "old" mom and this has been a trauma for them as well.... but they do love having me be much more available to them.) I have found lots of entries to put in the Challenge Journal although I will be honest enough to say it is the hardest one for me because I am still struggling with pain, sickness, resentment and wanting my life back. BUT... every single day I make myself find at least 3 things to be able to find gratitude for and so far I have always been able to do it.

Thank you Sandy for sharing your story because I was able to find some hope that maybe someday I will be in your positive frame of mind. I have not gotten there yet, but I am working towards it. I also know that with the severity of my illness I most likely will not return to work but I need a sense of purpose and I am searching for thatl I know I will find it.

Jen