I’m not doing well. The second day now of awkward nonsense. Yesterday was more filled with cranky and annoyance and disappointment and even slight anger/outrage. Most of the day today has been all about avoidance and feeling resigned to the reality of things. At some point a little while ago …
That’s all I get. No questions asked. No discussion. No nothing. A unilateral decision. An expectation that I will accept this. That I will bend and compromise away all. Because, hey….that’s my role, right? That’s my position in all this. I am supposed to take what I am so graciously …
Is this going to turn out to be the longest year in memory? This past Thursday was tests day again. Every 6 months, I repeat the same tests and eye exam for the study I’m part of. Pretty quick and painless. The upcoming Monday however? That’s probably gonna be not …
Life is fucking surreal. In general, on and off, life itself shifts from mundane and pedestrian to some kind of normal middle ground to the weirdest, most random and surreal shit you’ve ever seen. Currently, my life is so fucking surreal. I was going to say chaotic at first, but …
I need a vacation. Preferably somewhere far away from everything, a cabin in the woods or something. I can’t deal with life anymore.
The weather is lovely although I could do without the full days of rain. Life is pretty good right now. I’ve finally reached a state of….normal? That’s the best word I can think of right now to describe it. The fatigue is absent, my memory has been improving and in …
The time of no sleep is over. It was a fun 2-3 weeks. I leveled out to a normal for a couple of days and then it went downhill. Had a couple of days of fatigue and am now at a point where it’s gotten a bit better, but I …
It might be time to put some in my phone so I remember to actually update this thing. I’ve been doing fairly good since last time, no major health stuff really. Up until a couple of weeks ago when I had my first relapse since being on DMD’s. Luckily it …
I guess it’s about time to tell the story of how this whole MS ordeal started for me. Cue January 2013…I think? Honestly, my memory is not what it used to be. Anyhow, somewhere around new year’s I started feeling slight numbing sensations in my thumb and index finger of …
Really good way of describing what life as a spoonie can be like:
[–]driveonacid 19 points 3 days ago
I tell them that it’s like a lamp with part of the insulation missing from it’s cord. Sometimes the light turns on. Sometimes it doesn’t. Sometimes it comes on for a while then goes out. And, it might just burn your house down.