real life,  update

Unintentional break kind of

Things have been kind of sliding downhill both emotionally and health-wise. I’ve told one or two of you in private, but I suppose it’s only fair I just have out and say that this constant sickness I refer to is Multiple Scleriosis. I have primary progressive, which is not the kind you see commercials for the on the tee vee with people bouncing around and rock climbing. Those are Relapsing Remitting, whose symptoms tend to face over time before getting worse out of nowhere. If it happens, at all.

From the moment I was showing symptoms, I was already deteriorating. Recently I’ve come to need crutches to walk. I have immense trouble with language, such that this paragraph and a half has taken half an hour to write for various reasons.

Needless to say, this has affected my mental state, both physically and, well, mentally, and it’s suspected that my chronic migraines are a symptom.

What this means is I don’t really know what happens from here on. The type of care I get (and have always received) has been palliative. Twice a year I get an IV drip of Ocrevus, and the rest I just get what care I can get for any new symptoms that crop up, including, now, speech therapy.

Modding is really the only thing I have occupying my time. My hands shake too much (lithium as much as MS) for me to knit and crochet like I used to, or to burn wood. This is what I have. And I’m going to keep typing my stories for you as I can, if I can ask for your patience in return. Blender, ironically, is the only thing that works…well, I won’t say easily because it’s Blender, but well for me. So that’s what I’ll do.

As for now, I’m going to try and take short break. I need to find a happy place.

Love you all!

0 Comments

  • syl

    I pray that all those new therapies they're working on make it to clinical trial or market soon, then. Because that is a terrible disease, and I think you have been very courageous in facing it.

    Is there anything we can do to make the language thing easier?

  • Yueviathan

    It pains me to hear this is getting worse, huggles furbi <3 But you hang in there ok? You take the time you need and come back and shine like the phoenix that you are. In moments of our frailty, we shatter, cast aside a bitter taste of brighter pastures. And for not the warmth of current love, one can become lost to the shards that defines us. Comfort and rest to recharge one soul and body, hands lay ready, arms spread wide open,they await once soul and body are redefined. Recharge, for a body can be tended, recline for a soul can be mended. Sorry not for what you can do no longer, for the love of those from the heart welcome you with no condition required. All loves <3

  • Qewbix

    I'm so sorry to hear that! My uncle is suffering from that as well and it defiantly isn't a fun ride >< Take the time you need. We'll all be here for you πŸ™‚

  • RefurbMadness

    I appreciate that, I really do. Unfortunately I don't think there's much to be done on the outside, although you folks have the luxury of reading what I've carefully(ish) curated. A lot of my therapy is slowing down my thoughts and speech and trying to manage frustration, since that's what tends to get things stuck in a loop of failure.

    I'm not supposed to say "failure" but let's be real.

    But yeah. All I can do is do my best, and it really means a lot you'd offer to help in any way πŸ™‚

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