[srgallan]

Hi,

I have a question if anyone else is experiencing this. In my 8th month after being symptom free"ish" for almost 8 weeks I had a setback after returning to work for about 8 weeks. My trigger is still unknown, perhaps a combination of many.

However that week leading up to my bad day I noticed some minor pain in my left leg muscle and what felt like muscle weakness/shaking causing unsteady hands.

My symptoms have largely subsided again but my tolerance of places like Malls or other busy places has not gone away. It had disappeared for a couple of months but is still hanging around at the moment.

What I have noticed that's new is that when I start on activities either cognitive or physical I start feeling a bit unsteady. I get the tingling weak feeling leg muscle and unsteady hands. I don't think it's low blood sugar, can this be a PCS threshold alarm like my dizzy spells in the first 5 months? I was in a Costco today and held pretty strong but around the 50 minute mark is when it started to hit as an example. If I rest or block things out for 30 minutes it generally goes away. It does not help that those mall lights seem to mess up my eye sight quite a bit but hats and certain sunglasses help me quite a bit.

Today is my first day of my 10th month since injury and off work. I am actually quite functional again and continue to improve so I am hoping it's a light that I am starting to see at the end of this tunnel.

[Mark in Idaho]

srgallon,

Please try to throw your calendar away. Trying to count or measure time of your recovery is counter productive. It increases anxiety.

I find that I need to be very aware of how my mind and body are reacting. Costco for 50 minutes is far too much. The mall is too much unless I go in during low times, find the store I want, buy the idem and get out.

Shopping at the mall is stressful for number of reasons. First, the visual and audio over-stimulation. Too many voices and people milling around. Second, Window shopping and walking through the stores puts too much stimulation and cognitive processing load on the brain as one is constantly confronted with a need to analyze and consider the value of different items. The combination of the first and second can lead to quick and deep fatigue.

I suggest you avoid those over-stimulating environments so you can save that brain energy for the necessities of life.

It sounds like you went back to work as soon as you had a good day or week. You may have slowly exhausted your brain. Especially if you added after work activities to the mix. You may do better if you sort of ration your brain energy. Go to the mall only after having a very light day at work. Or, on a day off but still only using a bit of that day off to go out.

Think of your brain as a bank that is slowly filling over time. You do not want to drain it to empty. You want to keep a good reserve in it.

Hope you can use these ideas to get a good long term link of good days and weeks and months. Remember, it is a marathon, not a sprint.

[srgallan]

Thanks Mark,

I was pretty symptom free in my home life for about 4 weeks prior to returning to work on an easeback (4hr days mostly) and was successful until my 6th week of work until it all came back but not as severe. So I had about 9 great weeks strung together.

During the week that I got my setback I did go to the Costco then and was there for 2 hours with no issues and had introduced some 8 hour days in my work rotation. Perhaps as you say I tried to return to normal too much and drained my energy, my insomnia had also hit a peak during this same week and had 3 nights of not a single hour of sleep.

I guess just because I feel well I will be more cautious moving forward, talk about lessons learned the hard and expensive way :-(

[Mark in Idaho]

I personally understand the impact of insomnia. I know that I must lay low the day or days after a struggle to get sleep. I don't know of anything that is as big of a trigger than not sleeping. I can recover from the other triggers much quicker than I can recover from a single sleepless night, let alone 2 or 3 sleepless nights.

My heart goes out to you as you struggle with insomnia.