Yesterday morning as I was getting my stuff all ready for my psychology appointment this coming Friday morning, I couldn’t seem to find my appointment letter anywhere so I rang them up.
Only to find that my Psychologist had actually forgot to make the appointment!!!
He always writes it on the notes he gives me in my last session, my fiancé was there with me too so I know I’m not going mad!
There is not even any appointment waiting on the system for me, I’m very upset.
The secretary said she is going to pass the message on and is going to ask my psychologist to ring me.
Which he did very apologetic at 5.30pm after his appointments. He owned up it was his fault, and I have another appointment for two weeks today. Thank goodness!
I really don’t need this, bad day yesterday and don’t need head messing with again.
Then last night early evening suddenly my head just went weird. I couldn’t get a simple sentence out right, got all confused. Then my eyes went blurred and pain behind left eye, then terrible heavy pulsing pains in my head.
My head got really heavy and started to pull down and jerk, I knew what was happening.
So I got myself to bed to safety, and it wasn’t long before I had a full on seizure. Jerking, spasming, my whole neck and shoulder pulled the pain was excruciating. I was crying I couldn’t do anything, my fiancé looked after me.
Not a lot our partners can do but be there for us, he held my hand helped comforted me as I went through it.
My face was all moving, it started on the right which is not usual! I turned over to lay my face on the pillow in hope of it stopping, but my left side of my face muscles started to pull instead!
So laid with my face, my jaw pulling across. My neck being stretched across with my shoulder, and my left arm like a lead weight as my left leg spasmed and kept jumping and pulling up. My head pulsating and throbbing, with terrible pains inside my brain.
I cried throughout, tears awash everywhere. My fiancé wiping then away, and stroking my hair.
When my body eventually calmed down, and the seizure became less. The pain following, the heat and pulled muscles all so sore as the pain doesn’t instantly stop and go away.
I don’t think people realise, that following a seizure (or a Dystonic storm) can be just as painful as the seizure.
The after affects to the body go on longer, as the body does its best to try to rest and repair itself.
My head buzzed a lot of the night, but through exhaustion I did sleep.
Unfortunately my fiancé doesn’t get the luxury of passing out from exhaustion, as he keeps being woke by my body jerks, or my noises I make in my sleep.
I never used to snore, but since my throat muscles are all pulled I don’t breathe the same at night, in fact he says I sound like a predator with a click, clack sound in my throat.
So I don’t feel at all well today!
I couldn’t lift my head properly this morning, and I am weaker on my left side than normal.
I ache terribly, and my head even now has not stopped buzzing.
I get tinnitus in my left ear, I’ve had it for years even though tests say I have perfect hearing. Which is rubbish as my fiancé can talk to me on my left side, but I won’t hear a word at times!
The buzzing / ringing in my ear can be hard to live with too, but it just gets forgotten about as I have so many other problems.
Only I can never get away from the buzzing which can really get me down.
So I’m very low today, don’t feel like talking much or anything.
I am totally deflated and out of energy.
Anyway, I just though it was time I write a catch up on what goes on in the life of a Dystonia and Functional Movement Disorder Sufferer x
Thanks for reading as always folks x.