Dysatonomia Awareness Month; Getting diagnosed and some survival tips.

I am one of the lucky ones. I have a GP who listens and is able to make sensible dx.  One of the difficulties in making a dx of POTs and other Dysautonomic issues is that the symptoms are unstable. We can have a good day and then we can have awful days.

I am also one of the lucky ones in that I don’t get the sense of anxiety, I just get shaky, dizzy, nauseous and black outs. I wonder if some POTsies get that and it feels like anxiety, and so the doc decides that’s what it is.

Most GPs have never heard of POTs, and it takes a very good one indeed to be bothered to look it up. Thank God mine is one of those good ones.

A dx of POTS can be a nasty shock for some patients, but I think for most of us it’s a relief “So THAT’S it!” kind of moment. Knowing there is a sensible explanation for what our bodies are getting up to is a relief.

Over the ten years of my illness I’ve gone through the “Dunno, but it will go away” dx to “I told you it would go away, as it hasn’t you are doing something to prevent getting better…” to “Would you like to see a psychiatrist.”

After nearly 8 years I was finally sent to a rheumatologist who spent 5 minutes poking me and said “Fibromyalgia” handed me the laughable info booklet and told me, “it does go away,” as she shoved me out the door.

Survival tip no. 1; DO NOT BELIEVE what doctors say unless they can tell you the research that backs them up.

Survival tip no. 2: Ignorance is not bliss. The only way you are likely to get a dx or treatment is if you do the reading and leg work yourself.  Get aware of the bizarre politics around these diseases and how that affects the care you will be offered or refused.

survival tip no 3: Try not to think too far ahead. Just pray for today, tomorrow will have enough worries of it’s own (as a Wise Man once said). With serious chronic illness, looking ahead can be scary and overwhelming.  “Lord, for tomorrow and it’s needs I do not pray, keep me, My Lord from stain of sin (and a crash) just for today…”

Survival tip no 4: Keep a record.  Your foggy brain, word problems, memory lapses and general fuzziness will make telling doctors what’s going on more difficult if you don’t. This is a complicated business, so having some clear notes and even photos can help.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s