I'm starting to think you're just lazy.

[Urkittenme]

This has been my worst fear, hearing these words coming from my boyfriend. He knows I am trying to figure out what's wrong with me, and says he is glad I am doing so. We have been together for 7 years now. It's so frustrating, there is literally always SOMETHING wrong with me. I've always assumed I have a weak immune system. Strep throats, UTIs, multiple pink eyes, bartholin cysts, back pain, falling arches, catching a cold if I come within 100 feet of someone who has been around someone with a cold.. I'm a basket case usually. I've learned to stop complaining. Everything I deal with on a daily basis is invisible, what point is there to complain? The only thing he sees is me getting dizzy and lightheaded when I stand up because it usually stops me in my tracks. I guess he thinks I'm sitting all the time because, well, plain laziness. He works full time, makes enough for the both of us and I hadon't quit my job about a year and a half ago when we moved into a new rental (his dad's property, needs work.) This was based on the frequent bartholin cysts which were preventing me from working almost a week every few months. My retail management position wasn't very understanding. He has been mostly supportive, but when he said to me the other day "I'm beginning to think you're just lazy" (I hadnt done something he asked me to) it about broke me. He had such a long day at work and his boots were soaking wet, I know he was exhausted and took it out on me. He apologized later. 

I wish he knew how I felt. I wish he could understand what it's like having to take a break every time you do anything that requires minor exertion. I wish he knew how it felt to get exhausted getting up and going to the restroom. To have his heart rate jump to 165 picking up an object off the floor. I feel like I do a pretty good job of keeping the house in check, having dinner prepared, bills and whatnot.

I try to suffer in silence but I just can't take it anymore. It's such a relief to see that so many people are feeling the way I feel, and I'm no longer going to let anyone tell me it's all in my head. So far,  with family and friends (mom and dad especially, since they both have their own crazy health issues) the general concensus is "everybody has problems." IF ONLY THEY COULD FEEL WHAT I FEEL FOR ONE DAY. 

I'm having a particularly bad week with shortness of breath, brain fog (anyone want to know how many kitchen fires/ car accidents I've caused in my life?? Haha) and pre-syncope. The metoprolol seems to be keeping the heart rate at bay for a few hours but my SOB seems insane. On top of all this, I've had swollen lymph nodes in my throat and throat tightness for weeks now. 

Just can't seem to catch a break. Going to see a new pcp on Monday, armed with info from this blessing of a site. I've stalked through hundreds of pages in the forum now and I love and feel for you all.

[MomtoGiuliana]

So glad you have found DINET forum and website to be helpful to you.

You certainly echo what many patients unfortunately experience with "invisible" illness.  It's hard even for loved ones to understand when we look well and seem to function pretty well.  It's an educational process for both patients and caregivers/family.

That said, many of us w/ POTS and related illness do see improvement over time and/or with the right meds.  Hope you can find more answers including a treatment regime that helps you feel better.

I will say too that there has been a lot of nasty respiratory infection around this season at least in my community.  I am getting over a 2 week cold that included painful swollen throat and larynx.  This doesn't help!!

[Urkittenme]

Momtoguiliana,

I'm sorry to hear you've been sick! Definitely does not help in the slightest. I'm actually hoping I am sick, and that it's not a reaction to the beta blocker from mast cell activation (especially the increase in shortness of breath, holy cow!!) Which would make sense to me since I am definitely hypermobile with loose joints prone to dislocation and pulled muscles. I plan to discuss it all with the doctor, and hopefully not scare her away at the same time. 

Thanks for listening to me rant. I truly hate to complain but sometimes I gotta get it off my chest (even though I wish I could LITERALLY get it off my chest, haha.) I am thankful to be able to be home and not working. I hope to get this figured out soon as we would like to start a family.

[Debbie Rose]

So sorry you are feeling so frustrated. Early on, when they thought it was fibromyalgia I lost most of my friends for the same reason-"you don't look sick". Trying to tell someone you can't plan ahead because you feel differently every day just does not make sense to most people. The only friend I had left had an illness herself which was also "quiet". I have been single a long time now simply because I don't know any man who would be willing to handle all my issues. The closest I have gotten to get people to understand is when someone get a really bad stomach/intestional flu-that is close.  And my brother going thru chemo got a clue then too.

We do get better at finding the right combo of rest and activity and with the right meds to stabilize some of the heart rate and BP, it can be doable

Best of luck

Debbie

[Urkittenme]

Debbie Rose,

I appreciate that you took the time to reply. It's so great that we have this outlet to talk to others who truly understand. It's hard to lose friends but I commend you for getting rid of those "friends" that didn't support you.  

Wishing you wellness!

[angelloz]

We all understand exactly what you are saying. I guess in truth before I was hit with this terrible disorder, I may not have understood others with this problem. unless you can walk in someone's shoes it is difficult to grasp what they go through. Be kind to yourself and hang in there!

[DizzyGirls]

I am so sorry you are having to deal with all of this.  It's hard enough to live with this disease and then for someone to accuse you of being lazy is disheartening.  I hope today is a better day.  I, too, live in CA and know that with spring coming and all the rain we've had, symptoms are worse.  I have a lot of shortness of breath and there are two things that help me.  One is my Flovent inhaler (250mg), and the other is Sudafed.  I don't always take the Sudafed, but when it gets bad enough, it helps as an adjunct.  I need to use my inhaler all the time as the spring pollen makes everything worse.  I don't have asthma, think it's just the EDS.  Have you been diagnosed with EDS yet?  Sounds like some of your symptoms would fall in that category.  Hope you can get a good network of doctors soon so that you can feel better.  Hang in there!

[Urkittenme]

Angelloz- thank you so much, I am definitely trying to take it easy. It's such a relief to finally somewhat understand what is going on with my body. 

DizzyGirls- Hi there! I hope you and your girls are feeling well (relatively, of course..) thank you so much for telling me about Sudafed I will definitely try it!! As for EDS, I'm quite certain I have the hypermobility type. I hit all points on the Beighton scale minus one wrist that I have pain in. Apparently everybody's joints don't click clack?? Haha. Every joint pops when I stretch and I have to be careful how I move my shoulders. Other signs are translucent skin, bruising easily, scar easily, and most cuts get infected. The only testing I've had done so far is an ECG which shows my heart is enlarged, a right bundle branch block, and signs of a past heart attack (yikes, I'm 24). 

My brother also shows symptoms of pots and eds, and I definitely believe there is a genetic component in my case. I wouldn't be surprised to learn I have mcad, as I sometimes get hives immediately after consuming alcohol and certain foods (fruits mostly) make my mouth and throat itch like crazy. I also had shingles at a young age, I don't know if that's related. My parents always said I was a "bulimic baby" and I'm definitely nauseated all the time.

Anywho. Sorry that was long. I swear I was just trying to thank you for your advice and well wishes