To be sick of being sick

(6 Posts)
Happyhippy45 Tue 30-Aug-16 21:02:08

Please join me in my pity party.
I had a lumbar puncture(spinal tap) done as a diagnostic test to confirm a "working diagnosis" of MS.
I developed a post lumbar puncture headache. (Low pressure Cerebral Spinal Fluid.) Horrible pain in head, nausea, palpitations, vertigo among other symptoms. The only way to resolve it was to lie down flat.
Had an epidural blood patch to fix the leak of spinal fluid. Worked initially but still had intermittent symptoms for the next few months.
Then it started leaking again full on. Back with the awful headache and all the other symptoms. My neurologist said it was unlikely to be a low pressure headache and dragged his feet for 5 months before believing that this was the case and getting a second opinion. Went for another epidural blood patch 2 months ago which has successfully healed the leak but has now put me into high pressure. (Rebound Intercranial hypertension) So basically I can stand and move around for short periods. Can't sit for any length in an ordinary chair, have to sleep propped up on loads of pillows, can't drive for any great distance AND CAN'T WORK! I've been off since December. It's slowly getting better with a low sodium diet and diuretics (from food not medication.)
I am so fed up.....depressed, anxious, bored and feeling useless.
I have to go to a health assessment because I am claiming employment and support allowance. "To determine if I need to be on them".......I don't know where to start!
The irony is that my MS has been stable since before I got diagnosed. The fucking test to diagnose it has incapacitated me.
I can't discuss what the lumbar puncture was for with anyone in my family apart from my sister and husband as I've not told anyone else about the MS.
Thank you for listening.

monkeysox Tue 30-Aug-16 21:03:24

Yanbu flowerscake

harderandharder2breathe Tue 30-Aug-16 21:04:52

Yadnbu at all flowers

Happyhippy45 Tue 30-Aug-16 21:05:30

Thank you monkey

Happyhippy45 Tue 30-Aug-16 21:06:02

and harder

flibbidygibbet Tue 30-Aug-16 21:11:45

You poor thing. There is nothing worse than feeling poorly. What a horrible time.

Be really kind to yourself. Lots of dvds, books, good food, spend time doing things you enjoy.

Yanbu at all. All best healing wishes

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