Now for what is on my mind: my first support group meeting. I was not sure what to expect in terms of activities, and it was mostly discussion of people's problems and experiences. That was okay. It was nice to give and receive in a group where everyone has similar struggles. Sort of similar.
One unexpected aspect of the group was their level of disability. The group is billed as support for people with mild MS or those recently diagnosed. I was surprised that some people were called mild. Some could not work anymore. Some used walkers. Some had tremors in their voice that made it harder to understand them. Some were dysarthric. And some had cognitive impairments that affected their memory, language, or social skills.
There was only one person like me, where no one would guess that we have MS. Hiding it well. Sure, subtle signs could give it away to perceptive folks, but the vast majority of people would not know. That person asked for my email address, so that we can keep in touch.
I was looking forward to the meeting, and I was surprised when a few people praised my bravery in attending. Some praised my beauty, which I did not mind at all! Oh, and I was the youngest there by far. Most were in their 50s or 60s, and I am in my 30s. I think the other "you'd never know" person must be in her 40s--I just know that she has college-aged children.
When the disabled kept pouring into the meeting (alright, not pouring in... there were maybe 10 of us there), I became apprehensive. A little anxious. They represent my future, and I did not like that future. I still hope to become healthy. Be healed. It does not matter that my hope for healing is not reasonable; I still hope it.
As the meeting progressed and I got to know their personalities, I was not so anxious. They were really nice people. I was to continue attending this group.
I hesitate to do my ratings at this point in the day (around 4:45), because things typically get worse in the evening... But I have been forgetting to blog, so I should go ahead and do this.
Sensory:
-Pins and needles: 2
-Tingles: 2
-Dysesthetic pain: 9, I am ready to tear my skin off. Anything to stop the burning.
-Paresthesias: 3
-Tingles: 2
-Dysesthetic pain: 9, I am ready to tear my skin off. Anything to stop the burning.
-Paresthesias: 3
-Numbness: 2
-Vision: 1
-Nerve pain: 5
-Hearing: 1, but was a 2 this morning--tinnitus! Yesterday I had a brief hearing drop in my right ear. Probably not much, maybe 10-15 dB. Enough to be noticeable but not to interfere with communication. I am trying to remember how long it lasted, but it came back so slowly that I did not notice the time frame.
Motor:
-Walking: 3, slow--my legs feel like they will buckle
-Sore muscles: 5, quads and upper arms (sign language)
-Vision: 1
-Nerve pain: 5
-Hearing: 1, but was a 2 this morning--tinnitus! Yesterday I had a brief hearing drop in my right ear. Probably not much, maybe 10-15 dB. Enough to be noticeable but not to interfere with communication. I am trying to remember how long it lasted, but it came back so slowly that I did not notice the time frame.
Motor:
-Walking: 3, slow--my legs feel like they will buckle
-Sore muscles: 5, quads and upper arms (sign language)
-Spasticity: 2 lower body, 4 upper
-Weak muscles: 6, doors are once again almost impossibly heavy
-Weak muscles: 6, doors are once again almost impossibly heavy
-Endurance: 6
-Fine motor: 0
Cognitive:
-Processing: 2
-Memory: 1
-Attention: 2
-Confusion: 0
General:
-Fatigue: 5
-Balance: 0, not counting in the dark
-Vertigo: 1
-Sleep: 2
-Bladder: 1, medication (this is getting better... but we'll see now that the medication has been increased)
-Proprioception: 0
-Swallowing: 0
-A: 2
-B: 3
-Proprioception: 0
-Swallowing: 0
-A: 2
-B: 3
Emotions: Okay. I spoke with an old friend this morning, and we cried together over something that happened a long time ago. Otherwise I have been okay. I had a good head-shrinking session yesterday. We are trying some cognitive behavior therapy strategies, which seem to help. They do help when the shrink helps me work through the steps, but I am not yet able to apply the strategies in the moment. Anyway, I am feeling positive about the work I am doing in and out of the therapy sessions. I got a book called The Feeling Good Handbook, which has various exercises to write out. I typed mine, which is easier than hand writing them. My shrink was excited that I am following through on it, and she suggested I email them to her. She can read over them before our sessions, and hopefully she can help me better that way.
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