So Fatigued---pots Is Changing

[Maxine]

I know quite a few of you know about the stress in my family. My mother passed away in February, after a terrible long battle with dismissive doctors who blamed her weight---(not that heavy), and diabetes for her rapid decline in her health. Despite many CTS---(some of which showed lesions---but doctors dismissed as "fatty" lesions), the cancer was not found. I find it hard to believe that Cancer can infiltrate her whole abdominal area in two months---liver, pancreas, lymph nodes, lungs, and bladder.

We were told only the bladder tumor was there, and did not spread. Anyway, our family found out of the terminal cancer on Feb. 23rd, and she died less then 48 hours later with only 2 1/2 hours of humane hospice care. My brother also has stage 4 colon cancer, and we don't know where my mothers began. Her brother also has colon cancer, and her sister had brain cancer and died in 2003.

My POTS has changed, and I'm now more sluggish, fatigued, and terribly sleepy. My EDS issues, and spine problems have increased in intensity, and I feel like the wind is knocked out of me all the time. Today I drove to the bank to deposit a check, went down the street to get my husband something cold to drink on his route, and went to pick up two items at the store, and two items at the meat market next to the store I went to. I walked out of the meat market, and I felt like I was numb all over, and very, very weak. Bp has been low, and my heart rates have also been low for me----but there are times when I feel tachy, but I get so depressed from all this I don't bother to check how tachy I am. When I lay down it goes away----probably typical POTS HR response to OI. I just can't handle gravity.

Now I find that I choke a lot----on my own spit, and on things I drink. The other night I choked so bad that the water came up through my nose----it was terrible. I find that I have more slipping in my neck/cranial area, but I have had this before, and it's not taken seriously by anyone locally. One NSGs said I definitely have instability, the EDS doc seems to agree with him, and is sending me to an orthopedist, but the other NSG is more concerned with the chiari related issues/compression on brain stem, and the congenital cervical spine stenosis. (both neurosurgeons are not in my state--I have to travel to see them) My sternum hurts, and the ribs near it. Someone handed my nephew to me, and he weighs about 20 pounds. I quickly sat down knowing I can not hold onto him. Since then---the sternum pain----it's really low, and spreads into the ribs.

With all this going on, I find that I'm dragging my feet on getting the colonoscopy done, and getting the tooth pulled that fractured. I called the oral surgeon three weeks in a row, and he has not returned my calls since I told him of my cranial instability, and the toxic effects I have with lidocaine. Due to the EDS affecting my vascular system I'm absorbing the lidocaine into my system causing a toxic effect----tachy, tremors, nausea, CNS excitement, disoriented ect. I just wish I could find a very understanding nice doctor who understood the problems I'm having and he would admit me to the hospital to get through this tooth extraction, and colonoscopy. Not only am I not stable physically, but I'm not stable mentally from all the stress I've been through since December.

In December I had some weakness/drop attack type feelings with the usual floor feels like it's moving going on, but this passed, and I actually had a fairly good spell in Jan and Feb. Not anything close to normal, but enough to not get completely wiped out when going to the hospital to be with my mom and Dad during all my mother's visits through out those two months. I made it through the funderal despite getting a bad cold, but I was out of it------so basically I was just there---I don't really know how.

In late December my mother was in the hospital just before Christmas, and this is when I would get those sudden weakness spells as I went through the lobby in the hospital she was in. Dad could tell, and even my mother would worry about me. The really sad part was we were all trying to push her because the Docs told us her blood clots were from lack of movement.

We still can't believe that they had her in REHAB the last week of her life----a dying woman---and cutting back her pain meds claiming she is becoming addicted. With all the cancer she had----there wasn't enough pain medication to console that pain.

As time passes we realize the scope of what she went through, and my brother who has cancer has to be terrified. I worry about my brother and his family. His colon cancer has spread to the other side of his colon and spread into 17 of his lymph nodes-----------and now his liver.

I want to be there for my family to help, but I'm so screwed up. My other brother helps out, but is very busy working as a computer hardware/software specialist for a large medical facility. My other brother is not helpful at all, and just stresses my Dad. I have been with my dad a lot, and he has opened up a lot. He also goes to the church where the priest is from who said my mother's last rights. They both loved this priest as he was by their side a lot through the whole ordeal.

I'm wondering if the stress is just making me crash--------or it's my EDS/spine issues making me worse----or both. I also find my temper is short, and I'm not one to have a temper issue. I have no patience for anything.

Sorry to leak out my life story from the last three months------------------but it's been quite rough.

Maxine :0)

[pat57]

According to my PCP emotional stress is physically exhausting too.

Sorry about all your going through.

[MomtoGiuliana]

It is no wonder you are feeling worse. Emotional stress is extremely tiring. I have felt poorly due to far less stress than what you are experiencing.

Have you read *Full Catastrophe Living* or other works by Jon Kabat-Zinn? People of many different faiths find his work helpful at times of stress and sadness and loss. Does yoga or meditation help with managing stress? It sounds like you need to find some outlets and some help. There is nothing wrong with that. Those people are lucky, and there are few of them, who go through life without needing support and help developing coping mechanisms.

I am sorry about what your mother experienced in her last days. I am sure this is still painful to you. I hope you are not blaming yourself for anything related to her undiagnosed illness.

Please take care of yourself!

Katherine

[Sophia3]

Yes, the emotional stress and having to continue to do things will add to the fatigue. You need to REST more.

Lie with feet up over head if you can!! Be kind to yourself.

[Maxine]

Thanks Girls----

I do see a therapist. Actually for a while I saw two of them, but one of them is not a provider on my insurance and his bill is only covered 75%, and with all the Docs I see, I had to stop going to him. I still see the woman therapist I have seen from the beginning of all this---starting in 2001. I see her on and off as I need her, same with the other guy. Right now I have been seeing her every two weeks because of all the stress.

The guy therapist was great, but I could never get my body calmed down enough to do any relaxation exercises. We did try a few, but we went back to talk therapy----then all of this stress happened. I really liked him, and I hated to lose him. At some point I'll see him a couple more times to get some ideas on some relaxation exercises. For now I just need to talk through this a lot-------that is what helps me clear my mind the most. She is a good listener, and helps me organize my medical care.

Katherine! That's the Book the guy therapist told me about----thank you, thank you, thank you-----I had forgotton the name.

I am not coping well because I'm overwhelmed, and I'm so afraid to have any medical procedures done right now because my body is in such a fragile state----physically, and mentally---------------and of course this adds more stress.

If you knew the mess my teeth and jaw was in---------and the instability I feel in my neck/cranial area---uggggg-----it's just plain scary. I think the EDS Doctor understands fully-------------I think he has seen this before.

I have signed up for a study at NIH with Dr. Nazli McDonnell, I did this two years ago, and it may come up within this year. I need to get stable before this. Maybe this study can give me a lot of insight on how each of my physical problems affects the other.

Maxine :0)

[Donna F]

So terribly sorry u are goin thru so much, my prayers out to u, and i thought i had it bad. I will say stress dont help at all, but I like u can just go to the bank r to the store for 2 items and am wondering the whole time if i will even make it home, so it is a mixture i think but mostly i find that the docs really r most of them dont really understand fully and neither do others who dont exp this. U can only do so much, u cant be wonder woman with this some of us can but sounds as if u r like me and u r lucky to get a daily bath. I suggest u do as u can and pray for the rest, i do althought some family members i dont think really believe i am sick, so it makes it tough, but the stress factor u r under, couldnt hurt to see a therapist at all, a good one that really listens that is!!

Praying for u

donna

[flop]

Hi Maxine,

I just wanted to add my support. You are going through so much at the moment - lots of healthy people wouldn't cope with the stress that you are dealing with. I find that my POTS is worse when I am stressed so it may be your body's way of telling you that you need to rest more.

I know that it is easy for me to tell you to rest but that at your end that probably seems impossible. I agree that seeing a good counsellor can help you to balance / manage your stresses. You need to separate all of the issues out and only try to deal with one at once, as someone else said you are not superwoman and no-one else expects you to be either (except possibly yourself).

Try to put 30 minutes aside every day for "me time" and do something just for yourself. This could be anything you enjoy (not something you need to do) - like listening to music, a craft / hobby, reading, soaking in the bath. During that time you are not allowed to think about anything except what you are doing. It can seem hard at first to make this time when you are trying to do so much but once you are in the habit it makes you function better at other things so the time pays for itself.

When my GP suggested it to me I thought he was being daft but it really has helped. I do silly self-indulgent things like painting my toenails - pointless really as I wear compression hose and no-one sees my toes!

I hope that gradually you will be able to face your stresses one at a time instead of trying to juggle all of them at once.

Best wishes,

Flop

[persephone]

My god, woman, how are you coping? I am so sorry about all that has happened. This is horrendous. If you lived in the UK, I'd tell you to get in touch with the Samaritans but I don't know what sort of equivalents you have in the US.

I'm not at all surprised that you're feeling physically worse in these circumstances. Stress makes anything worse- from tempers, to pin from fractures to heart attacks. It may be that your stress is MAKING the POTS worse.

My POTS is always worse when I have bad stress put upon me.

We're all here for you any time you need us!

lots of love

xxx

[dizzygirl]

many many hugs Maxine!!!

im hear for you call me if you need to vent!

much love and many hugs

dizzaloo

[corina]

hi maxine,

you have had a lot going on these last months (and even longer). it might definitely worsen your pots. take your time and make sure you get enough rest and maybe a fresh wind through your head might help.

thinking of you,

corina