Slithering....

The latter part of this week I have had posts in my head.

Distracted by Twitter.

I rarely properly take to my bed.  Don't get me wrong I spend a lot of time in bed.  Interrupted sleep.  Pain, dislocations, subluxations are normal.  The cats at all times understanding.  The dog so new to our house, rescued to our home, understands already. We adore each other.

I nearly called the doctor.  How does one explain, I feel so ill.  Without any sign of flu or virus.  Can't eat too nauseous.  Arms, legs, brain turned to jelly.  Made it to surgery to get repeat prescriptions, without the required 48 hours notice.  Receptionist who has known me for many years said S..... you really look unwell.  Please see a doctor.  A silent tear slid down my cheek...  I don't know why this happens I just know that it means something is up.  Silent tears mean I feel too ill to explain I need to go home to get back in my bed.  Whenever something is wrong I know because this tear thing happens.  It means I am sick.  How can one explain to a kindly receptionist, I just feel too ill, I need to go. I smile a little, kindness means the tear slid in a solitary drop from my chin to form a damp mark on my scarf.  I promise her that if I don't feel better I will see the doctor next next week, prescriptions in hand, I slip away.  Feeling as though I am disappearing from myself.

Arrive at pharmacy, where I am also known well.  Ushered to seat, scripts rushed through.  No blood in my cheeks aware that the pallor, causes concern.  Normally I attempt small talk, not that day. Which I think was yesterday.  No one noticed that my soft clothes under my coat, hat despite the sunshine were not day clothes.  If they did they were too polite to say, get dressed.   Nearly a sad bag lady.

Get home, slither to bed, wishing someone would change the sheets, the duvet cover... my grandmother would have done this.  Understanding that I need the cool touch of a freshly laundered bed set. I feel close to her, perhaps this is dying.  Laptop at end of bed.  Do not search, I think I am dying.  Not in a dramatic way more a sliding away. No matter, I'll sleep again.  Family drift in and out.

My heart flutters more, when i wake it does this thing that feels like its moving. thumply, thumply, shudder, My blood pressure low. 

I berate myself for not addressing medical stuff that needs to be looked at.  For putting my family through this shit.  A person this week who has become a bed, moulded into a thing so floppy its not me.  But it is me.

Forcing myself to drink slimfast drinks, not for dieting reasons. Chewing, is not an option against the forces of nausea.   I swallow as husbands looks on, concerned.  Took me over two hours today to muster up enough energy to get up.  Husband seemed relieved.  She is up.  I have that thing again where my arms won't work.  Hang limply by my sides.  Bend my head sitting at kitchen table, waiting for tea to cool so much its beyond tepid, knowing that hands won't hold the contents.  Its good that I am short.  Tipping mug into mouth I wonder how he still loves me.  Wives like me don't give much back.  I know I am giving less and less of myself.  Myself lost somewhere in pain and this affliction. 

I won, I did not google mitral valve, or I think I am fading into somewhere else, my eyes are too tired to read anyhow, apart from Twitter and blogs I am familiar with.  I am not a hypochondriac.  This is ehlers danlos.  This is autonomic dysfunction.  This is me.

I will come out the other side with promises to myself to get referrals to the City.  Or will I just do what I normally do and accept that this is how it is.  In reality, I take the right medications, drink liquids, more salt, climb back to reality.  It won't be normal because normal is pretty abnormal.  But the not normal is better than sliding into oblivion, losing days of my life.

I wrote this post because I read Michelle's last post on processing over at bob's place (see last post to link to her blog).  I was brave I told the truth.  My mind is mush so this post is that.  The mush in my mind caused by an autonomic crises?  Perhaps when this happens I am supposed to be in hospital, on IV fluids, then leave all fixed.  I read in blogs from the US that this is quite normal for EDS bendies like me.  But here in the UK it seems there are no guidelines.  It went well in the end. Because I lived.  I just lived in my bed.  Sweating cold sweat, that to me smelt funny.  OH said it didn't but I think he was being kind.  Body temperature too low.  I rarely register a temperature as just above normal is high for me.  What caused this crash.  I hated myself for giving in.  Texting husband who was downstairs that I needed the loo but arms and legs weren't working.  Its nearly over.  I got dressed, in soft clothes.  Nothing over the head, arms still won't raise.  Soft clothes help the transition from bed to life.  Soft because the pressure of clothes on skin, too soon for that.


I couldn't play the pretend game this week.  You know the one.  I'm fine, fixed smile, pinpoint pupils, very well thank you.


So I made it downstairs.  Yippee.  Lucky me.  But now I have told the truth, I'll log off from this laptop and go to bed.  Listen to OH snore gently.  Then switch on new laptop, waiting at the bottom of the bed.  My new friend.  My comfort.  My link to the outside world.  Real time friends, are sliding away, their lives are busy.  I understand EDS is boring.  I will want to see how Veronica is doing @sleepless nights, (see blogroll) to find out how she is, someone stole her ducklings - bastards.  Twitter people who do not know me welcome me.  A world where EDS is understood - the blogosphere.  Without this contact with the outside world EDS would swallow me up and I could disappear.  I'll read that others do complete proper things, art, crotchet, knitting, campaigning for dla, mother's dreams......  It really really helps.  Because this summer, I will achieve something.  The inspiration is there, a world of other people's lives.  Enriching mine.  I lost my intellect somewhere in Ehlers Danlos land.  But little by little, this week that felt as though it were a lifetime I learn again that I have inner strength to fight some more. 

Looking to small things and not dwelling on the week where I slithered into Ehlers Danlos land.  I am thankful for the love of my husband and children (to me they will always be that) my animals who surround me.  My life.  I lost myself last week, not to self pity, I learnt a long time ago that to dig the self pity hole is futile.  I just got lost in Ehlers Danlos land.

Tomorrow is another day and I will persevere.  I told the truth.  Its a start.