learning to cope

[mindylee1]

I am new to this group and I must say that when I sat down and read through your forum I cried my eyes out. I felt like I had finally found a place where I belong. I am 25yrs old and recently diagnosed with POTS. I have been batteling an ongoing illness for 1 1/2 yrs passed through 6 neurologists. Theyall told me that I waas depressed. I'd like to go back and tell them a thing or two. My diagnosis was from the Cleveland Clinic. What a wonderful place. It felt so good to finally have an answer. I'e been through it all ( as you all have).

I recently married this past October. My husband is the most incredible man on this earth. I can thank my lucky stars to be marrried to my best friend. He has never missed a Dr's appt. He knows every drug I've ever been on. He even knows how to deal with me.. it's not easy . I have not even got to enjoy married life yet. Please tell me that this will get better??

I'm reaching out to you all because right now I am not coping with this well at all. I feel like an 85 year old woman trapped in a 25 yr old body. I don't want the things most people want at my age.. like going to the bars, going to the movies. I just want to be able to stand to do the dishes without vomiting. I just want my life back. I just lost my job because they don't understand. This has really made things hard on us because I am not able to work.

I don't know if this letter makes any sense but it's good to know that I'm not alone. I read some of your letters and you seem like such wonderful people. None of us deserve this but at least you can surround yourself with people that understand you.

take care

mindy

[MightyMouse]

Welcome Mindy, I'm glad that you found us.

Coping is a long term endeavor. Some days are better than others. For me, today is a bit difficult...but most days, I'm able to keep a really positive attitude. I think that has carried me through more than I can even quantify.

It's important, too, to have people near you who care and at least try to "get it." Sorry about your job. Perhaps you'll get to a point where you can work again. Many of us go through bad periods, but we also have better periods too.

Nina

[UnicornIsis]

Welcome. I had the same reaction the first time I came here to. Not too long ago actually. I cried and ran(figuratively speaking) and hugged my Mamma. She thought I was getting sick again, but I pulled her in here to the computer because I was soo overwhelemed at finding this place that I couldn't even talk. It's a truely WONDERFUL experience finding this place and everything being here does for you.

Be very glad you have your husband and for everything he does for you. My ex-bf couldn't handle me being sick when he came home from the sandbox and it was even worse for him because he had to deal with what he had gone through too. Needless to say our pending engagement got called off before it even got made. All of our plans got shot down the drain and my hope for a new life and someone to take care of me and for me to take care of disappeared very quickly. I'm so envious of you for your husband. Please tell him from me, and many of us I'm sure, that I apperciate what he does for you and that I commend him for being there for you and helping you and careing for you. In my eyes he's a wonderful person for doing that!

I'm trying to take 1 class at the local community college, I was in college when I got sick, I'm 21 now. Some weeks I can handle it, others I can't. I recently said I just want to be normal for one day, that's all. I know I used to say I didn't want to be normal, but this isn't what I meant! I'm a 21-year-old-girl stuck at home who uses a cane when she can walk and leave the house and the rest of the time lays on the sofa wiped out. I'm 21 and I can't even get out of bed some days and I don't even do anything to be tired for. We all go through it. They way I have come to look at it is this: as long as I can complain about it, it means I'm still alive. If I'm complaining about how bad it is now, that means it was better before and I KNOW it goes in cycles which means it will get better again, I may not know how long it will be before the cycle swings up, but it WILL.

I know what you mean about the dishes. Now that I'm home all the time I feel like it's my duty to do the house work. Every now and then I can get up enough energy to fold a load of cloths, but it takes me hours to do it. Then Mamma comes home and I have to watch her do the same thing I did in about 20 minutes and while being tired from work too.

I know most of what I have said is probably depressing, but I hope it helps you, really. Please get in touch with me if you want to talk.

MP

[Faith14]

Hi Mindylee1, I'm new here too and I am at a loss. Today has been one of those difficult days for me. See I have been DX with Lupus and MS in 2001. This past year my BP was yoyoing so bad they run an Autonomic Reflex Test, boy did I fluck that. I was put in the hospital right then, my BP jumped up so high. I go from one extreme to the other. I have been stuck in a W/C since then before this I did use a cane. My pain is unbearable if I try to do anything strenous, and my pulse or BP goes wacko. My sister lives with me now along with my husband and I, she has been great. I have been having a very difficult DX I wonder if the doctors even know what they're talking about. I take so much Meds now to get my BP stablized. I am having to adjust to us building a handicap house. I feel as if this is somone elses life other that mine, ya know??? I keep sayig I'll be alright tomorrow, and I still intend to keep positive and with the help of my O/T and P/T we will get back, well at least to the cane huh???

So I'm with ya Mindylee, how to become the shock of it all, and making sense of it all. Looking at all this site it all does make better sense to me. in the mean time I pray for all the best for you, and get to feeling better.

Southern Blessings, Rita

[denabob]

Welcome Mindy & Rita!

I wish I had some profound words of wisdom for you but I'm afraid I dont. In some patients POTS does get better but in most of us it doesnt. The good news though is that MOST of the time if it is only POTS it isnt progressive. The hardest thing about this illness is learning to cope. I still sometimes feel like a prisoner in my own body. I'm 30 and have been sick for about 2 yrs. POTS diagnosed this year. I am on disability now (ego strike!) but after a while you prioritize your life and learn what to avoid in order to function. Learn your food triggers and small tricks that we all use to function (salt-lots!, water-lots!,rest-but not too much/muscles need to stay strong,support-we DO understand how you feel!) Go to the home page of this site and read "what to avoid & what helps"

I'm a "fix-it" type person I enjoy taking care of other people so for it to be my own body that is letting me down is an issue with me. I cant fix it and I have to rely on help from others more than I'd like to. But I've learned through the help of this forum that I cant dwell on the "down-side " of my life I have to search for the positives! Depression is a big part of this because the illness is so frustrating. But the key is to not give in to it and push for a normal life as much as possible. You will do better when you adjust your life to your new body!

We dont know why we were chosen for this but we do know that it could've been MUCH worse. If we have to have a chronic illness at least (thank the Lord) it isn't fatal! Sorry I'm preaching

Turn to us with anything!

Good Luck to you!

Deanna

[Guest tearose]

Hi Mindy, Hi Rita, welcome aboard. I'm glad you found us and as you can see from what you read, there are good times and bad times. Take a seat, fasten your seatbelt and take the ride with us. We can't tell you if you will get better but we'll encourage you to try your best to get the best out of life you can! This is a safe place to dump, share, support, it is real and non-judgemental. Hope you will visit often. Warmly, tearose

[geneva]

Welcome to both Mindy and Rita. This site is truly a godsend for so many of us. Just learning there are others "like me" can really boost your confidence that you WILL find your way through this new life you have been given.

I recently heard the definition of HOPE is to have a clear path of what you can do for your illness (this does not always mean finding a cure). I have thought a lot about that and I believe that is what it is all about to successfully cope with a chronic illness. The path may only seem clear for a few months and then we have to change direction (often MANY times) but to continue to look for ways to manage better is the answer. Finding this site can help you begin to see ideas that others use to cope. and having a place to vent is great as well as being able to help others can make anyone feel better. I agree with MM that positive attitude is top of the list!

The hardest thing for many of us who are type A is to try to push too hard. At my worst, I kept asking my family, what is my purpose in life NOW that I have been "blessed" with POTS. My family's response was that my "job" was to focus all my energy on getting better. Sometimes letting go of our OWN expectations is the hardest. Trying to establish a new lifestyle and realistic goals which incorporate our new reality can REALLY make a difference.

Mindy, it is so wonderful that you have a very supportive husband. HAts off to him and you for finding someone special. I think it is just as hard (but in different ways) for loved ones to watch what happens to us.

Again, welcome to the site!

[michiganjan]

Dear Mindy,

I am glad you are here with the rest of us. I have had POTS for more than 24 years. I first got sick with it when I was 32. Now I am 56 (soon to be 57) and still struggling with it. In addition to the POTS I have chronic fatigue, fibromyalgia, multiple chemical sensitivities, and extreme heat sensitivity. When I first got sick I went to docs who did a bunch of tests and couldn't find anything wrong, so decided I had an emotional illness. They branded me a hypochroncriac. I had no way to talk to anyone else who had what I have. In fact I didn't even realize that anyone else had ever had what I had. I went for years without any treatment except for a beta blocker. I had years of psychotherapy because I believed what my docs told me. (Actually the psychotherapy was somewhat helpful in general, but it certainly did nothing to help the POTS). And yet, here I am 24 years later. I have survived and there have been enough good times to have made it worth while.

I raised two children (born before the onset of POTS) worked at a series of part time jobs, wrote a children's book that was published by a well-known publisher, became a freelance writer of elementary textbooks, and now I am working on an invention and setting up a new business. All with POTS. I do take life at a slower pace than most and I do take naps and I do have bad days when nothing gets done. But I also have days I go to the gym and days when at least one or two things gets done and those things add up. What has helped the most is finding some helpful meds. and trying many alternate therapies and discarding those that don't work and integrating those that are helpful. I have a great support team. My marriage has survived. My husband is now retired and he is wonderful at taking care of me. He has been living with POTS, too, for the last 24 years. My current Docs are sympathetic and do not think I need a psychiatrist. My kids who are now married adults have grown up with my POTS. They are wonderful people who are tolerant of the limitations of others.

Now is a much better time to be young and have POTS. Now there are others to talk to. There are autonomic docs. Even some primary care providers understand that it is not a psychiatric illness and will work with the patient to get the best care. More and more is being understood about the various mechanisms of POTS. There are ongoing drug trials that are finding even more med alternatives for us.

Even though I am not cured, and time has testified to me that I most lilkey will not be, I am much better than when I first became sick. You can improve a lot. And even if you have months, years even, that are bad, you can survive and you can have a worthwhile life.

Whenever I get down and I do with regularary, I get on one of my POTS boards and have a rant. Then I get a shower of sympathy and somehow that picks me back up. So rant when you need to. That helps, too.

I guess I am saying. I did it with POTS and you can too.

Michigan Jan

[mindylee1]

Wow, thank you all for your engouragement and experiences. If there is one thing that I am thankfull for is that I know I could have been dealt a worse hand. I know I will learn to deal with this, somedays I just don't want to.. ya know. My main problem is being stuck at home right now. I feel guilty when I'm lying on the couch then I over work myself. I guess it is going to take some time. Well I sure am glad to have found you all thanks for all of the wonderful responses!!

Mindy

[AmyRS]

Hi Mindy,

Wow, your story is almost identical to mine!

I too am 25 yrs old and have only been married since July. I have to say that my husband has also been such a blessing to me. Your comment about feeling like you're 85 in a young body is exactly what I say!! I have had horrible knee pain in both of my knees for over 2 years now, but I have been able to handle that. My neuro problems started right after we got home from our honeymoon, and my POTS symptoms started about a month ago.

I know what all of you mean about not being able to do the simplest things around the house. I get so frustrated and lay on the bed and have a good cry It's so hard to explain to people who aren't sick what it feels like to not be able to do anything.

What a blessing this forum is, that we can see we are not alone and can find support from others who understand!

Amy

[Marg]

Hi Mindy -

My daughter's cardiologist, in her profound wisdom, has told us on more than one occasion: POTS is not life threatening, but it is life altering. As you're well aware, that's an understatement!

Think of inventive ways not to stand up to do things so you're not as dizzy and nauseous. You'd be surprised how many things you can do sitting. Iron, wash dishes, bathe. The list is endless.

I hope you can find some really good doctors to help relieve your symtoms and make you feel better. POTS can't be cured (YET), but hopefully your doctors can help with management.

Good Luck!

Margaret