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*sigh*

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When someone starts off with “Have you tried...?”

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I’m back, baby

May 25th, 2019

I might switch to a new Tumblr soon. If I do, I’ll let you know the address.

I stopped the anti-depressants I’ve been taking for 4 years back in April. Because my primary care physician thought is was time. I was a little (a lot) scared, but for now it is bearable. I think I went through the storm of that psychotic episode and survived.

The meds helped me be much more grounded. I am more irritable and sad now that I am not on them anymore, but...it is my normal I guess? My therapist used to compare my emotions to a sound system. So even though the sadness is definitively louder now, it’s nowhere near where it was 4 years ago.

And the good emotions are louder too. Like enthusiasm. 

Maybe I had a little splurge when I stopped the meds? I did buy 6 dolls because I saw a customize your own doll video. While I was feeling alone since my roomate was on a vacation trip. LOL. This is the kind of things cyclothymic people have to be careful about, but I did not ruin myself, so I guess it’s OK?

Oh well, my slips are never life-threatening, so I will be fine.

Other than that...my RA has been getting significantly more under control in the last year. I started a miraculous med called CIMZIA. It’s a bi-monthtly injection that helps prevent the damage RA does to your body. It blocks the Tumor Necrosis Factor that damages your joints. WIth it, I can walk without a cane for about 1 to 2 hours before needing to stop. It’s really fantastic, it helps me get chores done.

I decided this week to learn more about RA and alimentation. I did tend to keep this illness as far away as possible in my thoughts, but it’s not curable. So I better learn to equip myself and control its symptoms as much as possible.

But enought about me.  How have you been? :)

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Me : I'll work on my portfolio this week.

My RA: Good one bra!

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‘Tis the season

December 5th, 2017 :

20 days till the Holidays. 

7 days since I was fired.

30 days before I start a new med.

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Now jobless and with more crippling debts(get it??), I am carelessly happy. I think my brain works backwards. I am stressed out and depressive when I work, and don’t give a sh*t when something bad happens to me.

Or that’s a lie. I do give a sh*t. I’m relieved. Being more calm, sleeping more and staying in my flat helps reduce my pain and boosts my energy. Not by much, but I can work around my home.

I’m in a mood-swingy week. 

I’m relieved I can concentrate on my health. And since we have financial ressources accessible for citizens where I live, I will be able to pay for my living expenses and my meds. Just...not repay my debts. Which stresses me A LOT, I won’t lie.

I saw my doc yesterday and he prescribed 6 months away from work, to let time for my new med to do its work. It’s...longer than I’d like. But I don’t want to jeopardize my health to make more money quicker, so I guess I will roll with it.

It’s like a choice. My health or my financial health. I guess my credits will be absolutely desastrous by the time I can get back to work to pay all I own to the bank. Pff...

More realistically, I think I will have to settle for a part-time job when I’ll be better. Something that will let me have free time to rest and take care of my stupidly broken body.

BUT

I have to accept this is what will happen for now. 

My mind is on a creative loop. Being both crazy and crippled is twice the exhaustion. It’s like I have this little child in my head “Oh, we can use this time to make a video game! More drawings! A novel!”

And then I draw for 15 minutes and my arm hurts like hell.

Mood-swingy. “I could do ALL THE THINGS” vs “I am EXHAUSTED. Let me sleep” vs “I never do ANYTHING. Why bother?”

a loop on a loop on a loop on a loop..

I don’t have to do ALL THE THINGS. Just some small things each day. Depending on my energy level. Caring for myself is caring for a over-enthusiastic child, sometimes.

I decided to do some Holidays theme drawings to send as postcard or e-card to all my beloved friends. 

If you want one and we’ve never met, that’s cool too! I’d love to hear from you :) Just drop me a PM.

I love you all. <3

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“And lo, I saw a rider on a pale horse, and the rider was death.”

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#SpoonieGranny

November 15th:

I am officially a disabled grandma. A nurse will come to my house every 2 weeks to give me care, and my work has been downed to 4 days/week.

I am both relieved and a little shocked. I will have time to sleep and take care of myself. But my medication is still rising. Everytime I see my doc she prescribes a new med to add to the pile I’m taking. She says we gotta get this arthritis under control, and that my case is quite severe. It’s a little disheartening. I try not to let it get to me too much, but today I felt pretty down because of it.

So I decided to roll with it. If I gotta be a grandma, I’ll be a cool grandma. Being 30 and on Tumblr, I hereby declare myself the Spoonie Granny of everyone who wants/needs a grandma. I’ll bake you pie to comfort you and make you laugh with tales of my youth.

*get chocolate cookie out of the oven*

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Chronic Illness and Work

November 1st, 2017:

I'm finding a balance between work and taking care of my health.

Right now with my rheumatoid arthristis diagnosis + the meds cocktail I'm taking each day, it is not possible to work full time. I need A LOT of sleep. Like 10h a day. And I'm often woken up during the night because of back pain. #SpoonieStruggle?

It's not funny but I deal with it. The thing that annoys me the most is that my mental health issues haven't dissapear with this new condition. So I'm a mix of cracking joints and anxious brain, all rolled up together. It makes for weird combos.

I take my time going places. Transport is slower, with my cane, but I try to stop rushing to destination. I prepare what I need for the day and try to leave early. Maybe RA will make me punctual?

These days, I'm dealing with the fact I will be sick like this for the rest of my life. I'm annoyed. It calls for patience I guess.

I need to be sincere with myself and adapt my schedule to what I can do. It is not possible for me to adapt to a normal working schedule. I tried and all it does is making me exhausted. I work for 2 or 3 days straight and cannot function for a few days afterwards. It makes me look lazy and I hate it. But I cannot push through. I don't have the energy.

I have to accept that. The low energy I have.

Anyways..Love you all. Take good care of yourselves.

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TFW your med is backordered and 3 days later, your symptoms show... #JustSpoonieThings I'm still adjusting to being disabled, and today it sucks. Bad. Missed work and shoulder pain is back and makes it very painful to move. #RA is the f*cking worst. *pissed*

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"If my disease begins to flare, there is a different protocol that must be followed in order to save my life. I view the explanation similar to an emergency evacuation protocol or a fire drill. You hope that you never have to use it, but you know it's there and set in place if the need arises. This is an issue of safety."

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"My psychiatrist is always asking me for my opinions and for feedback, encouraging me to be an active participant in my treatment. And I’m baffled that this isn’t the status quo."

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On the lookout for queer games with positive, calm, #ownvoices content?

Let’s be cutiebots and go on cute, queer dates in the robo-tea game series!

Some key features of these games are:

Queer Robot Characters

Gentle Story

No Bad Ends

2nd Person Narrative with 3rd Person View

Designed as a Safe Space/Therapeutic game

Polyamory in MistenMinicups and 2ndServing

a secret note hidden in one of the main ui screens of each game!

My goal with these games (and many more) is to share sweet, romantic stories where you can feel safe. If you’d like to learn more about the concept, look here!

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New Med Extravaganza

Pharmacist : This pill is toxic, so you need to wash your hands after taking it. Me: (And you want me to s w a l l o w it?) Me:*get home, laugh nervously* Welcome to the auto-immune world!!