IB M

- 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.

- whenever I look at women around me, I find it sad how they seem to believe that's what women have to do... and it makes me wonder if men really do like these things...

Sorry, incomprehension soars in me.

Don't understand why women dress

To show their cleavage and forms...

Don't understand why they willingly

Make themselves vulnerable wearing

Long hair, high heels, or skirts...

Don't understand why beauty standards

Have determined they must decorate

Their face with all kinds of cosmetics...

None of it makes sense to me at all.

And none of it strikes me as beautiful;

All looks completely ridiculous to me...

Maybe it's my upbringing and traumas,

But I can't help viewing it as I do,

And can't for the life of me adhere...

I can never be that woman.

- sorry for my whining... huge preoccupation lately as it's noticeably getting worse now... and I'm really not sure how long before I can't move too much anymore... 

a dear friend of mine once jokingly said that if there's such a thing as reincarnation, one would be inclined to believe I must have really got someone's goat in another life... to explain all the seemingly infinite strings of bad luck in my life, as he put it... I thought that was pretty funny... 

There are apparently 3 phases to this condition:

     1)  Hypermobility

     2)  Pain

     3)  Stiffening

I'm still inscredibly hypermobile,

But with age, that has decreased

A little; still I'm more flexible than

Most.  In the last seven years, I've

Been in the pain phase, and just

Recently, I've begun to feel my

Knees when I walk like they're                   

Stiffening up some, so I'm thinking              (same for my back)

It's a start into the stiffening phase.

Phase 1 and phase 2 entail

Hypermobility, and phase 3

Can elevate phase 2's state,

So it feels like there's no getting

Out of the woods, as it were.

I have so much to look forward

To, don't I?  Meh, please excuse

My mood, it's really getting me

Down.  I just want to enjoy life.

I do, but it's getting hard to

Feel any bit of enthusiasm

Seeing as there's no bypassing

The inevitable decline to

Complete inability to move

Around with my own body.

I'm so frustrated with this turn of

Events after so many years having

Been crippled by other things.

Seems like I'll never be

Catching any sort of break.

Just frustrated, 

Just disappointed.

Trying not to get down.

- about travelling to a far place with my condition... to assuage their worries... to express mine... not implying the recent failed plans were due to my friends deciding what's best for me... but it is something that has happened before... so I worry a bit about it at times... 

If you were wondering,

For sure, travelling is

Incredibly difficult for me

On account of the pain

It generates in my body.               (that's aside my intense fright about flying!)

But the thing is, I push

Through all of that, 'cause

I want to be with you,

I want those moments,

And to me, it's all worth it.

I will not stop myself

From doing what I care

To do for as long as I can,

And right now, I can, even

Though with some difficulty.

I know someday it will

Be physically impossible

For me to do any of

These things, so, I'm a bit

On a clock to do them, too.

Yes, it will hurt like hell.

Yes, I will need to recuperate.         (that is not to move much for a while)

But, meeting you is more

Important than any of that.

Please don't decide what's

Best for me out of concern.

This condition is a bitch,

But I'm still standing in one

Piece, and I have to take

Advantage of it right now,

'Cause soon, I won't be

Able to do anything much

Anymore, and it'd be very

Saddening to be denied

While I'm still able to.

No worries, I won't arrive

In a heap or anything like that.

I'll be sore as sore can be,               (the thing is I'm always sore anyway)

For sure, but what does that

Matter?  We'll still be able

To talk together once I'm there.

I really don't see any problem.

You're picturing it from your

Perspective of how you'd feel,

But I'm telling you, I'll be fine.

My happiness will easily toss it,

So please have no worries for me.

- last one... 

I'll tell you how it'll happen:

I will kill myself someday.

Not today, not tomorrow,

But deep down, I know it,

It's exactly how it'll turn out.

One day, I won't hold back,

'Cause there's so much one

Can take, and so many efforts

One can make, and peace is

An impossible elusive dream.

I don't have the resources,

Or skills, or wisdom to see

Me through, and the levels

Of exhaustion are killing

Every bit of will out of me.

So although I'm still hanging

On right now, that conclusion is

Purely inevitable, is the truth of it.

One day, I won't fight it anymore,

I'll rejoin that peace I once reached

But was snatched away from...

I remember it, I still crave it,

And I can't shake off my belief

That I should never have survived;

My life ended thirty years ago.

It should have remained ended,

So I know, someday I'll just go for it,

'Cause I'm not good enough to make it

Better for myself, no matter all of my

Efforts, the brokenness will always stay. 

There's no two ways about it.

Ah, ok, then.

I'll just shut up now.

My sons

My husband

My cats

Music

Writing                  (and of course the PoetBay friends since 2005)

Programming

The world that saved me

- hEDS prevents me from taking any medication 'cause my body reacts very unfavorably to everything I try, always get the worst side-effects possible of the drug... my body is incredibly weird for a lot of things... example, I was allergic to my own maternal milk, for goodness sake... caused huge mastitis and dermatitis... should have seen the doctor's face lol, he'd seen it in his books, but had never come across it in 30 years of practice...  

Ehlers-Danlos Syndrome, type hypermobility, is a genetic degenerative condition of the connective tissues (cartilage, tendons, ligaments)... mine have too much room to move around, so any movement can make them either pull, pinch, get stuck, rub which causes a lot of inflammation or injury... 

I've had this my whole life, of course, but it used to be an intermittent pain.. in the last 7 years, it's been chronic and I've had a couple episodes of complete immobilisation...

Because of this, the number of travels (going to work, grocery, etc) are carefully calculated in my week and monitored to make sure I don't go over what I can handle physically... any outing must not be a situation where there's walking for more than 15 minutes or else my joints will flare up or get injured and I'll need a couple days of recuperation... 

It's definitely noticeably worse lately... and I'm trying to not let it get me down, but... you know...

The relief of physical pain:

A hopeless dream at this point.

It's a chronic state of affairs

With no solution in sight.

As pain increases, my mobility

Decreases right along with it.

And I have to find ways

To not pay attention to it.

But it's getting increasingly

Difficult to achieve 'cause

This body of mine's screaming

All of the damn time now.

Must confess, so exhausted.

Feeling unimportant,

Somewhat unloved,

And wondering to myself

What's causing this state.

Perhaps it's my binding

My identity and self-worth

In relation to those I love

That affects things this way.

'Cause those I love most have

A tendency to take for granted,

And are often comfortable to

Not take into account my feelings.

I don't believe that they mean ill,

They're just used to me being there,

And me always making concessions,

So I guess it's become invisible.

Little attention is given to me,

And it makes me wonder,

Maybe I've done something wrong

To find myself in this position.

Something's off, that's for sure,

But I can't figure it out clearly.

All I've ever done is love them,

Seems it's not a feeling they share.

I don't know.