IB M

- sorry, as previously mentioned, it's all too invasive... 

I can't even drink

To get myself 

Knocked out,

And I can't do drugs,

Body doesn't tolerate

Any of those things.

I'm just stuffed with

No way to switch off

From this hurting.

I'd like to be able

To say that life

Is beautiful, but...

You know.

- in the process of an administrative procedure with my employer 'cause I made a request for an accommodation in relation to my hEDS... I hate these procedures... and how stupidly people follow them even when it doesn't make sense in the circumstances...

To justify my request

I must prove to you

With supporting

Documents that I

Am truly hurting

As I say that I am

Before you consent

To my request...

I have to travel to the

Doctor's office to get

A note that will support

What I say that I need.

You know, do the thing

I struggle to do that makes

Me make this request

To you in the first place...

And then, as if that nonsense

Wasn't bad enough as it is,

You also tell me that I will be

Required to do it once again

In a few months time for a 

Second note, even though it's

A degenerative condition with

No prospect of improvement...

The second note will state

The very same information

As provided in the first one,

So why are you making me

Do this?  For what purpose

Are you requiring this of me?

I told you that moving around is

An issue, so you're making me,

To what?  Prove that I really can't?

Seriously, how stupid can you get?

My body is just pain

Of varying degrees

But always present

Not a single moment

Is passed without hurt

I'm kind of losing it

Hard not to feel it

It's invasively present

At all times, throbbing

In all kinds of ways

There's no way to toss it

Or not pay attention to it

It's there, like an unwanted

Passenger who hangs on

And won't let you forget

Add to the nightmare

Mobility's an issue 'cause

That pain is too great

The frustration is hard

To express, but it grows

I'm so very exhausted

I know I say it all the time

But am I ever, it's really

Weighing me down now

And not sure how long

I'll be able to withstand it

Feels like it's shortening

As the days go on 'cause

This pain is just too much

I seriously need a break

- really exhausted, so on my days off, I fall asleep at all hours, and sleep for long stretches...

it's currently 4h15... sigh...

Damn it, I hate it when this happens!

Fell asleep in the afternoon yesterday,

And then woke up in the night at 2am.

And of course cannot get myself back

To sleep, so I'll be up all this time

Until my shift starts in a few hours.

It's going to be a very long day.

I'm finally learning that song

On the guitar, and actually

Progressing well with it...

And singing it right along.

Truly the most joyful thing.

- the first step of isolation resolved is being able to get out of the house... the second one to resolve is to find people in my life... 

So, how does one go about

Making friends with others?

I don't know where to go, or what

To do to create such a context.

Last 30 years of my life have been

Isolated and pretty much hermit-like.

Now that I've broken away from

This issue, I don't know where to start.

I want to include people in my life,

But really not sure how to do that.

Where do you find people?

What do you do to make friends?

Have any suggestions?

- in saying this, the years of agoraphobic isolation probably didn't help matters here... people fade away after a while when they don't hear from you for a long time... so there's that... 

Some have said of

Me as a person that :

I'm special ;

I'm amazing ;

I'm admirable.      

Apparently, I'm something

Else, most uncommon

Person they've come across,

And they think I'm so kind

And so caring, they love me.

Yet, I'm all alone

With no one around,

So it gives one pause

As to what they exactly

Mean by all of that.

Seems to me if you have

Strong feelings like that

For a person, you'd be

Sticking around them,

Not be absent as they are.

This blaring contradiction

Leaves me somewhat stuck.

- getting loads of compliments at work lately... not used to it...

C'est drôle, à chaque fois

Que tu me complimentes

Je ressens une rougeur

Montée sur mes pommettes.

It's funny, every time

You compliment me

I feel my cheeks

Turn a shade of red.

C'est trop gentil, merci.

It's too kind, thank you.

- je suis dans le processus de faire une demande d'accommodement envers mon employeur en ce qui concerne ma présence au bureau 2 fois par semaine, j'aimerais diminuer... et la gestion de ma douleur, j'aimerais plus de flexibilité... mon employeur semble bien réceptif, mais il y a bien sûr un tralala de procédures administratives à passer... entre autre une visite chez le médecin pour une note appuyant ma demande... ce que je fais mardi prochain... 

MES LIMITATIONS :

- Bouger occasionne de l'irritation et de l'inflammation, et parfois des blessures, car

  mes tissus conjonctifs (ligaments, tendons, cartilages) ont tendances à soit : frotter,

  coincer, étirer ou pincer à chaque mouvement

- +15 minutes de marche occasionne de l'irritation/inflammation ou blessure et exige du

   temps de récupération

- +10 minutes à rester debout sur mes jambes (sans bouger) occasionne de la douleur

  (dos et jambes)

- Faire des déplacements occasionne souvent l'exacerbation de mes douleurs

- Douleurs chroniques (sans médication pour les gérer, car intolérance sévère aux

   médicaments)

- Sommeil souvent affecté par la douleur et beaucoup de fatigue physique

- Épisodes d'immobilisation et d'incapacité physique

MON ÉTAT ACTUEL :

- Fissure dans le labrum, hanche gauche --> qui ne guérie pas depuis 7 ans

- Entorse ligament, genou gauche --> qui ne guérie pas depuis 4 ans

- Entorse ligament, index droite --> toute récente, donc à voir

- Tendinopathie sous scapulaire, épaule droite --> rétablie mais fragile

- Kyste entre les ligaments, poignet gauche --> ne peut pas mettre du poids sur les

   poignets

- Douleurs intermittentes dans toutes les articulations et des élancements dans les os de

   mes bras et de mes jambes

- Irritation et inflammation chronique dans les articulations

- Début de douleur de la hanche droite (pas de diagnostic encore)

- Début de raideurs dans le dos et les genoux

AUTRES PROBLÉMATIQUES DU SEDh :

- Épisodes de costochondrite (inflammation du cartilage de la cage thoracique et le

  sternum)

- Écchymoses et hématomes (sans me cogner)

- Gastroparésie (digestion)

- first, it was emotional pain... and now it's physical pain... I'm exhausted... 

Admittedly, I'm a bit down right now,

So my thoughts are on the negative side.

Reflecting on the fact half my life is done,

And how that first half was truly horrible.

Here's my second half currently in progress,

And it's not looking like it'll get any better.              

The recurring and absolute constant for me

Has always been pain, and that'll continue.

It's the one sure element in my life

That has always been true and will

Always until the end be true -

No getting around that fact.

So yeah, sorry, not feeling too chipper.