10 Μαΐου - Παγκόσμια Ημέρα Λύκου

Για την Παγκόσμια Ημέρα Λύκου στις 10 Μαΐου (ΣΕΛ, Συστηματικός Ερυθηματώδης Λύκος) δεν θέλω να πω πολλά, γιατί αν αρχίσω δεν πρόκειται να σταματήσω ποτέ, άσε που θα με πάρουν και τα κλάματα, μη χαλάσω το μακιγιάζ (που δεν φοράω), μη χαλάσω και τη διάθεση ακόμα δεν μπήκε η εβδομάδα. 

Κρατάω, λοιπόν, επίπεδο, φοράω τη μάσκα "είμαι καλά" και, αντί να τα πω εγώ, θα αφήσω μια συμπολεμίστρια σε αυτή την μάχη με την απίστευτη νόσο, να τα πει για μένα. 

Το κείμενο-κατάθεση με εκφράζει και με εκπροσωπεί μέχρι το τελευταίο κόμμα. Περιγράφει επακριβώς αυτό που ζω και βιώνω μέσα στο πετσί μου σε καθημερινή βάση, νύχτα-μέρα, μπορώ-δεν μπορώ, έχω-δεν έχω υποχρεώσεις/δυνάμεις/αντοχές, επί τρεισήμισι δεκαετίες, και, παρά τις προσωπικές μου δυσοίωνες προβλέψεις, για κάποιον μυστήριο λόγο είμαι ακόμα εδώ να αγωνίζομαι, να αντέχω, να προχωρώ.

Το κείμενο το βρήκα εδώ και η φωτογραφία είναι από εδώ.

Τη δική μου μαρτυρία την έχω ήδη καταθέσει παλαιότερα στο blog μου εδώ. 

Είναι ένα θέμα που κυριαρχεί στη ζωή μου, ίσως ξαναγράψω γι' αυτό κάποια στιγμή, όταν θα καταφέρω - ελπίζω - να αποστασιοποιηθώ τόσο ώστε να μπορέσω να βρω το σθένος να το ξανακάνω.

Με αγάπη,

Εύα 💗

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Lupus Didn't Walk Gently Into My Life

 

Lupus didn't walk gently into my life.

 

It stormed into my life, rearranging everything.

Not just my health.

 

Everything.

There was another version of me before lupus. A version I desperately want back.

The me who didn't have to calculate energy like currency.

The me who could say yes without hesitation.

The me who could work hard, clean the house, take care of the children, run errands, cook, and make plans all in the same day.

 

Then lupus joined the chat.

A battle that never clocks out.

Since then, every decision has a price tag.

An energy price tag, a "what will it cost me later" price tag, a "can I really afford this" price tag.

 

If I go out to dinner tonight, will I be in bed for two days?

I'm so exhausted - if I push too hard, will I trigger a flare?

If I clean the kitchen, will I have enough strength left to take a shower?

 

I feel like I live in negotiations with my own body.

I seem to be losing most of them lately.

 

Time has changed.

Energy has changed.

Limitations have changed.

Even the way I think has changed.

 

Plans are "maybe" now.

Commitments are "I'll try."

Spontaneity is a painful memory.

 

The hardest part?

There are days that I grieve my old life.

I lost a lot of pieces of my identity.

I lost a lot of my independence.

I lost a lot of my security.

My dreams postponed or quietly buried.

Frustrated.

Angry.

Sad.

Lupus just didn't make me sick.

It reshaped my entire world, including the person I used to be.

 

It changed how long I can stand.

How far I can walk.

How much energy I have.

It dictates most of my days.

I cancel. I apologize.

I feel guilty. I feel misunderstood.

I feel like a burden. 

 

It touches my body, my mind, my relationships, my finances, my future.

And some days, the grief of that is overwhelming.

I feel like the fire I used to have, the independence, the "me" is being held captive under the weight of this disease.

 

Living with lupus means rebuilding my life around limitations I never saw coming.

But, that adjustment happens again whenever my health takes another hit and I lose more abilities.

I have to find courage on days I can barely lift my head.

 

Now, I have to redefine what a good day means. I have to redefine productivity and success for myself.

If lupus has rearranged your life, you're not weak when you grieve it - You are human.

I know we can't stay in that mindset.

Keep fighting. Keep loving. Keep trying.

It's okay to rest. It's okay to grieve sometimes. But, don't quit!

Keep Flying, Lupus Warriors!

~The Lupus Warriors Community~