How can I be so Sick?

I hate new Dr.s

There are a lot of reasons why:

- most are skeptical or at least ignorant about M.E.
- I don't like tests
- I don't enjoy sharing my illness story, usually opening me up to skepticism and/or ridicule and/or condescension
- I usually crash from the outing
- I have rarely, since becoming ill, actually gained any positive help or treatment from a Dr.

So, because I'd asked my NP some questions about POTS and showed her some of my BP and HR readings, the GP she works with sent me to a cardiologist.

As it turns out, he was a very pleasant fellow.  It still wasn't easy as it meant two outings (one for blood work) and another for an electrocardiogram and consult.  But he was easily the nicest Dr. I've seen outside my nurse practitioner and the M.E. specialist I used to have, Dr. Bested.

He agreed that I have major OI and POTS.  Although he didn't seem to think the POTS was more than my HR trying to circulate blood due to low blood pressure.  For once, I seem to have found a Dr. who actually, after asking a question, listens to my answer/response.  He was not condescending at all.  How is this the exception to the rule?????

He was also willing to try a number of things to help me.

I am going to try a different type of support hose, and a drug.  He said he doesn't see this condition often, only a few times over the years.  He also hasn't had much success with improving the situation for patients.  That was a little disappointing to hear.

The other negative, was that he kept discussing exercise in order to build muscle strength. He explained how this in turn would help my body pump the blood back up to my heart and brain.

I understand the concept and I explained to him about the M.E. and how activity and exercise can make me worse, in fact usually does.  I said "I would love nothing more than to exercise, I really would" (which is true).

I also shared how in the beginning with the M.E., I kept trying to go out and run, and how it just made me much much sicker.

I also explained how my specialist had me chart my activity to understand how activity makes me crash.....and how important it is to maintain that ballance of activity and rest. I told him how crashing is something specific, and doesn't just mean  "getting tired", that, in fact, I get quite ill - sore throats, increased dizziness, fevers, muscle weakness.

He listened.  Did he believe me?  I can't say. Is he going to write a report to my GP indicating exercise would cure me?  I don't think so, but I can't know for sure.

He did say I have significant OI issues.  Just in the office after only 30sec standing my Heart Rate was racing at 150.

I am going to do a 24 hr. holter monitor test which I don't mind....I just didn't want to be subjected to a stress test where I would definitely crash from the activity.  He wants to make sure I don't have any arrhythmia along with the OI issues.

So now I'm terribly crashed.  I feel so horrible, I just want it all to end...this life with the never ending virus/flu.  With a little rest hopefully I cheer up, but I'm so tired of this sickness right now I want to scream.

It's ironic to me sometimes how such a small thing as a Dr. appointment can make me so ill.  And said Dr. would have me make myself even sicker by 'swimming' and 'using a treadmill'. Can you imagine the day when physicians are versed enough in M.E. to know about post exertional malaise (PEM)?

There are scientific studies that  prove when we exercise we get worse/sicker....what will it take until this is common knowledge amongst physicians? Keep dreaming I guess.

So I end with this question....How can I be so sick?
I am not just a little ill, or a little 'off'.

How is it those of us with M.E. are SO sick and it doesn't show up in those Da*&n blood tests they run?

I realise it was the same for MS patients who had "women's hysteria" before they found abnormalities on MRI, or thyroid patients before they found the thyroid test.  But I don't want to wait anymore.  I know there is something extremely wrong in my body, I want to see that blood test or scan that shows it, that's all.

I was listening to Jennifer Brea, who is producing the Canary in a Coal Mine film, talk about how she reacted when those first Drs told her she was fine and merely had 'conversion disorder'. She thought "fine, then I'll exercise", making herself much worse, throwing herself into a relapse.

I've done the same thing more than once.  The first year I was sick, I kept going back to the local clinic to get help.  Every time my blood work looked good, I would think, "it can't be that serious then, I must somehow be exaggerating" and I would throw myself into work and exercise, inducing crash after crash.  I almost had that reaction today, looking through my blood work, but PLEASE let me say I know better by now?  I'm crashing from the appointment, I don't need to make it worse by going out for a walk or outing.

I hate M.E.