No Reason for Alarm, Apparently #SoCS

Posted on by Astrid

Hi everyone. I’m pretty frustrated right now. This is in part related to the usual struggles with my day schedule, ie. the fact that the only thing that’s clear about it is when I have support and when I’m supposed to be by myself. I’ve explained a zillion times that I need my activities to be more structured but the staff keep saying I can’t do any meaningful activities when I’m in distress. This may be partly true, in that polymer clay, baking and cooking are harder for me to do when I’m in distress, but when there’s no clarity about which activities I’ll do, the sheer magnitude of the list I have to choose from, overwhelms me before I can even decide whether I’m in good enough a mental state to do such an activity.

Another thing that’s been bothering me, are my physical symptoms. I’ve had horrible tremors for a few years already, but over the past year or so they’ve steadily gotten worse. My institution’s physician tells me to distract myself when it happens because it’s probably in part stress-related. However, I can barely operate my phone or computer when my hands are trembling and all the activities that I can do on my own that would at least in theory distract me, involve my iPhone or computer.

Yessterday, the tremors were so distressing and also my leg was in a constant state of tension. The tremors mainly affect my right side, while the muscle tension was on my left side. I have mild cerebral palsy affecting mainly my left side, so it’s kind of understandable that I’d experience spasming in that leg. However, there’s no known explanation for the tremors. Yes, they could be psychosomatic, but they could also be due to medication (one of my various psychiatric medications), some kind of long-term effect of my cerebral palsy, or any combination of these.

Knowing that my doctor doesn’t see a reason for alarm, is somewhat comforting. At least there’s no reason for me to believe I have a neurodegenerative disease. That doesn’t mean the thought doesn’t creep up on me at times though. However, even when I am able to realize that I’m not suffering from Parkinson’s (not that my tremors are at all similar to those someone with that disease would suffer from), the tremors are still debilitating.

On Monday, the staff are going to ask my GP’s nurse practitioner about the symptoms yet again. My intellectual disability physician tells me to distract myself, apparently believing my symptoms are psychosomatic. I’m pretty sure the nurse practitioner is going to say the same. However, if only those telling me my symptoms are all in my head and due to stress, could help me lessen that stress!

This post was written for #SoCS, for which the prompt today is “alarm”.

17 thoughts on “No Reason for Alarm, Apparently #SoCS”

    1. Thanks for the suggestion. Unfortunately, I struggle with coordination. I do agree that movement might help, but haven’t figured out a way other than walking.

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  3. I have only had slight tremors a few times, I can imagine that strong ones would be very debilitating. I know medications can cause them but it is encouraging that your doctor isn’t worried about them. But that does nothing to stop them. I do hope you can find something to help. I know I have used grounding to help calm during a panic attack… would that work at all for the tremors? Sending positive thoughts your way!

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      1. The most recent technique my therapist went over with me is a box. You can include tracing the four sides of a square in the air but the steps are easy. Breathe in for four seconds, hold for for four seconds, breathe out for four seconds, hold for four seconds, and repeat (while drawing one side of the box for each 4 seconds). I think adding the “drawn” box adds to your concentration off of the stress or anxiety) It can’t hurt to try. Just think 4 square and breathe it out. Good luck my friend!

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  4. I hope that you can get some more definitive help from the Nurse Practitioner and better suggestions to help you through the tremors. They sound very frustrating and not being able to distract yourself your usual ways probably makes them feel worse. Maybe adding some kind of physical movement that doesn’t involve fine motor skills may help. Sending positive thoughts your way.

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    1. Thanks so much for your kind words. I really hope there’ll be a way to lessen my symptoms. Re movement, I go on walks almost everyday but that doesn’t seem to help.

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  5. Essential tremors run in my family, and I’ve seen how frustrating they can be. Just saying to distract yourself is not helpful without some concrete suggestions. Do you every use relaxation breathing or guided imagery exercises? They sometimes take practice before they become useful, but can be quite calming.

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    1. Thanks for your supportive comment. I do sometimes try relaxation techniques and am in movement therapy to among other things help me find relaxation too, but nothing other than sometimes walking seems to help right now and you can imagine it’d be senseless to spend my entire day pacing around.

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