IB M

- 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.

- 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.

An explanation about offing myself:

I mean it in the context of my condition.

At some point, I will go, there's no doubt

About that, 'cause there's no way that

I'll go to the end of this deterioration.

My mind is pretty clear on that decision.

Remember that I cannot take any medication

To alleviate the pain... eventually, I won't

Be able to withstand it anymore... so, at some

Point, I will go through the steps to obtain a

Medically-assisted death when the time comes.

Not sure if I would qualify,

But that's where I would start.

- 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.

- my job requires me to write a lot of explanations and answers to questions... and I get a lot of reactions from colleagues about how impressed they are about what I write... I don't get it very well...

To be honest, I don't quite get

What people find impressive

About the way I write things...

It may be proper grammar,

And proper spelling throughout,

But it's truly nothing more...

There's nothing special about it,

And to see them react, you'd think

They'd read Mark Twain or the likes...

English is my second language,

And I have a high school level

Of writing skills, that's it...

The same for my language French,

I learned it in elementary, high school,

CEGEP, home and my society, that's it...

No higher education is involved

In my 'skills', I just like to write,

And I like for it to be proper...

But what I write expresses nothing

Grand or of great note, it's certainly

Nothing very smart or too deep either...

So I really don't know what they're

Impressed about, their reaction

Always takes me aback in wonderment...

- 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.