On the mend, at last!

What a week!

I woke up Monday morning with a headache.

Up til Monday, I had been operating under the belief that I was getting better slowly.  I believed that I had gotten my headaches managed again as I was not having them anymore.   And while my sleep patterns weren’t back to my baseline yet, they appeared to be improving.  I was still waking up twice, but I has waking up later and later each morning — from 3ish to after 4 for the first one.   I took these all as good signs of healing compared to the previous couple of days.

Like I said, then, I woke up with a headache.   Getting my child off to a new camp with a headache was more than I could manage emotionally, although I did manage to get him there and get his day started with a successful dropoff eventually.

As I later described it, I think if I had woken up with a headache any other day, it wouldn’t have gotten to me, but to start the week with a headache was just too much.   And while I thought that I was getting better by the end of the previous week, it was clear that I wasn’t and that I needed to re-think the steps I was taking to get myself better.

There is nothing like an acute health crisis to show you exactly where the holes in your medical and rehabilitation and recovery team are!  And I already new that I had not yet managed to develop the support team around my persistent symptoms that I needed here in Austin, even though I have been working hard on that for almost 3 years.

So I reached out to former speech therapist here in Austin to see if she had any suggestions until I was able to see the Sleep Doctor.  I had called the Sleep Doctor’s office previously and they had worked me in for July 1 which was the earliest they could do it.  My Sleep Doctor, Dr Hudson, is a great doctor and thus is in high demand, so its not easy to get in to see him quickly.

My former Speech Therapist responded immediately that she had a handout on brain rest, but was not in her office and she suggested reaching out to someone who was in the office.

I also reached out to a friend who is an MD and is familiar with sleep medicines and brain injury recovery.   She confirmed that many of the medicines can exacerbate the cognitive symptoms.   Since the cognitive increased symptoms that I was having because I was getting poor sleep were really trying to me.  Trying to take the symptoms in stride was wearing me out.  So I was glad to be reminded that these options were a last resort.

In reaching out to others, I remembered that cranial sacral work had helped me in the past and that my former speech therapist had told me that many of her patients got calming results with that.  So years ago I had found the best cranial sacral therapist in town and had indeed gotten alot of relief from this modality over a years period.  So I reached out to him.

The person who had done cranial sacral therapy for me agreed to do some for me even though he was in the process of leaving Austin.

Tuesday I felt better because I had reached out to my network and knew more of my options.

And Wednesday morning, we did a cranial sacral session which helped.  I had more energy afterwards, I felt better and I slept quite differently that night.   The next couple of days, I realized that my cognitive deficits were no longer getting worse each day from unrestful sleep.   That was a huge relief!

I am going to have to explain how it helped and what it did and did not do, but I will wait til next week, since I still am managing how long I stay on the computer.   I am doing minimal editing of this, and will come back to things I have missed in this description when I am back to my baseline.


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Staying Afloat–Part 3

Wow-I am still working hard to return to my baseline before my Dentist’s appointment.   Its going on 20 days now.

Wow, that has been a long time.

I don’t want to stay on the computer for more than 20 minutes, as I know the computer is not harder on my eyes and can wake me up and since I am having sleep issues still, I want to be firm on observing that.

So I am going to make this post short.

I am really thankful for all I have learned in rehab to help me manage this setback.

I am also really thankful for the doctors that I have who are helping me with it.

I have realized on my own this week that I need to be writing a sleep diary, so I am doing that.

Here the big points of what’s happening.

I got my headaches under control.

So it was lack of sleep (from waking up in the morning) that was the issue and subtle but increasing cognitive issues coming from not being able to get quality sleep.

I did a sleep study last week (that was luckily already scheduled) and will be able to see what issues can be understood from that once the study is interpreted.

I have made appointments to see my doctors here and in the meantime am trying some home remedies based on the Chinese medical notion of which organs are active at which time in the early morning.   More on that later.

On Tuesday, I was thoroughly bored, because I have had to disengage from my normal life so much.

I took boredom as a good sign.  I was out of pain.   I started trying to plan ahead.    A doctor reminded me that I needed to take my health issues first and to not jump the gun on getting back to the baseline.   Its a huge temptation in the face of uncertainty to want to plan as though everything will be fine soon, but can also be a trap.  I have learned that healing is not a straight line upward.

I started planning more engagement with people which was helpful.

I felt pretty frustrated on Wednesday as I wanted to get well faster.  Each day I was getting more sleep and waking up later, but still waking up in the morning.

Thursday, I woke up alittle down as my waking up moved from waking up later to waking up earlier.

I had to remind myself that I didn’t really know if that was better or worse.

The last two days I have appeared to feel more rested even though I am waking up still twice in the morning and at earlier times.

Like I said, I am really grateful that I can articulate what’s happening to me so much better than I did previously.

I have the vocabulary to talk about what’s happening and the ability to dig it out of my memory so that I can talk about it.  These are gifts of rehab and my public speaking.

And I have a lot more support of what I am going through because I can articulate it.  I have support from my husband and close friends and I have support from other moms, who get that not being able to function very well affects my ability to be a mother.

I know I need to be more concrete, but will do that when I feel better.    And I realized this week that this experience is useful for thinking about what its like for people with unidentified TBI who don’t have the support of doctors or health professionals or the vocabulary or the social supports that they need to get through a concussion that isn’t healing itself.

Its also a reminder that I know that I will come out of this, I just don’t know when.   I know that because of my experiences with my recovery.   I did not know that when I first had my concussion.   And I heard from many professionals that I would not get better of I wasn’t better in two years, so I had a sense of a deadline that I was not getting appropriate treatment to meet.   So I am glad to know that I will come out of this and that I just need to use my tools and my resources and communicate as best I can and take care of myself.   I don’t know when I will get better, so I need to manage that uncertainty, but I know that I will.




Read More - Staying Afloat–Part 3

Noticing the energy and hope from my new monitor — and thankful for how far I have come

My new monitor is so amazing!   Using it releases energy for me.   I can actually “feel” that my brain is more organized when using it.    And it feels like it takes less cognitive energy for me when I use it.

I was describing to a friend today how exciting using this new monitor makes me feel.   She told me that she notices something similar when she uses her ipad (a bigger screen) rather than her iphone (a smaller screen).  She says she is able to “think” better with her ipad.   I thought that was interesting feedback from someone who is not even trying to compensate around cognitive deficits from a brain injury.    Even she can notice a difference in the size of a screen.

Upgrading computer equipment that makes my day easier or does not take as much energy out of me allows me to do more with my day.

And the feeling that I have when I use the new computer monitor is that it is opening up new horizons for me because I can think better and it takes less energy for me to use.

To me, new horizons mean new possibilities for my functioning and these new possibilities both inspires me and gives me hope for improving the quality of life in the future.

Feeling this new energy also makes me reflect about how far I have come in my recovery about earning how to manage a burst of new energy.

Early on in my recovery, I might stumble upon strategies and activities that would increase my energy and I would think that that energy meant I was “well”.   Yahoo!  Yahoo!   I wanted to be well so badly.

But I wasn’t well, I just had a little more energy.

But erroneously thinking I was “well”,  I would unintentionally overdo it because of the short-term energy and hope I felt.   Sadly, I would exhaust myself without intending to or even knowing that I was.  Often I would become “too tired to sleep” so I wouldn’t be able to sleep.   And when I did get some sleep, I would often be fatigued for days.  Or worse, fall into a downward spiral that I would not know how to get out of.  Difficulty sleeping would lead to poorer cognition and then more difficulty sleeping and ultimately my mood would sink.

I had not learned important skills like acceptance about my injury and I had not learned awareness about my injury.    These are critical skills for recovery.   When I finally was referred to speech and language therapy, roughly 3 years after my accident,  I learned acceptance and more awareness.  And I learned about how to manage my injury better so that I could be more functional.  I learned to pay attention to my long term recovery.

As I write this, I realize I have come along way!

After years of increased acceptance and awareness and practice, I have learned to notice the increased energy and let it inspire me.   I have learned to work with the energy to help me improve slowly and easily over a longer period.

And, I have also learned not to get fooled by it.

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