Category: Frustrated

The Old Two-Day Meeting Test

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Well, nothing like an hour and a half drive and two full days of meetings to test one’s fatigue and stamina!

I had to attend a two day conference where just getting there was a first test. Driving an hour and a half away was the longest I have driven along since my surgery. It’s an easy drive, but one must concentrate on staying focused while driving. I did…I arrived…I was tired. I would have preferred to close my eyes for 15 minutes, but the agenda would wait for no one.

Paying attention, listening, interacting, taken notes, and just plain old thinking took their toll on me both days. We have very few meaningful breaks where I could rest properly and one day we worked through lunch while we ate, so I had not chance to leave and rest. I made the drive home and promptly just wanted to settle into a hot tub and soak my tension away – which I did!

I don’t expect anyone to understand what I’m going through and I certainly hope no one thought I was bored or falling asleep those few times I actually had to close my eyes during the meetings, but I had to take care of ME. I’m only a little over four months about. I may look fine, but I still have my days and times when it’s a struggle.

Well, at least I look better than I did four months ago! 🙂

 

It Has Been A Week

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I have been close to tears about five times this week. None of these times actually produced tears, mostly because two of the times were at work, so I really kept it in, but the other times certainly could have produced tears….but nothing.

Since my brain aneurysm rupture in 2006 I noticed whatever mechanism within my brain that triggers tears, just isn’t the same. I would feel sad about something, and knew I would normally be crying over it, but the tears would not come. I’d be curious to know if any other brain aneurysm survivors have experienced the same thing. However, when those tears DO start flowing it’s difficult for me to shut them off and they completely drain my body and brain of any needed functionality.

Tonight I opened that valve and the tears are flowing. This Sunday is Mother’s Day. Normally a happy occasion for families to celebrate their moms with gifts and spend time with mother’s, granddaughters and grandmother’s. Unfortunately, for my family, it’s a sad occasion and doubly so this year. No, my mother hasn’t left us, but both my sisters have. So not only has a mother lost two daughters, but I’ve lost both my sisters and my niece and nephew have lost their mothers.

My sister Dori had a massive ruptured brain aneurysm ON Mother’s Day in 2012. My husband and I were in London, England when we found out. We cut our trip short to join my family in a two-week, hopeful vigil praying for a miracle that never happened. Technically, we had already lost her on Mother’s Day. I don’t know how my mother or my sister’s son, can ever replace that memory. I know I can’t. Because she died of a brain aneurysm, I’m also tormented by my own demons about how she was misdiagnosed and how I should have pushed her more to insist the Dr’s look closer. Having the “urgent care” president where she was treated admit in a letter, after her death, that aneurysm signs were missed, makes it even more heart wrenching.

My “Family” mailbox in my Email now only consists of my husband and my niece. No other relative emails me. In fact I didn’t even know my cousin’s husband had died because she didn’t email me and none of her brother’s or sisters did. I miss my emails from Dori and Rhonda and Mom. Since mom had to switch to a laptop from WebTV, she hasn’t been able to understand and grasp using a computer, so we no longer have that convenient form of communication. She doesn’t call me, due to the cost, but I call her two times a week. And as I sit here typing this, I am bawling and feeling horribly pain in my head, that is just short of 4-months out of open brain surgery to repair my 2nd aneurysm.

Searing pain around the side of my head that is made worse by the stress of crying…and I can’t stop. I want, and desperately need a day off of work to get some sleep and rest, but there are meetings I must attend. Why I’m asked to attend some of these meetings, when my ideas and recommendations are met with a giant eye-roll and dismissed, is something I don’t understand. Even though I was apart of developing the program that’s being discussed and am very familiar with how it works, being treated that way in front of many others (for a 2nd time) can lead to tears, but I held it together…until now. So on top of grieving again for my sister, I’m dealing with being dismissed at work and just getting there on a daily basis while I’m still recovering.

Then there is my darling niece who will have to endure her first Mother’s Day without her mom because my other sister Rhonda died just 4 months ago. My poor mother has lost two daughters and I’m all she’s got left. And even SHE is having issues right now with horrible pain in her back, which brings back many memories of my sister Dori. She had horrible back pain for months before finally having surgery a few weeks before her death and I’d talk to her on the phone as she was in that pain and knew she had been crying due to that pain.

So when I hear my 87-year old mother talk about getting to the point where the pain makes her cry, how can I NOT think about my sister. I don’t know what to do to help my mom when she’s in NY and I’m in Maine. She’s been to two doctor’s and they’ve given her patches and some meds and told her to stop lifting things. Great. That’s great advice…but do they know what is actually wrong? I doubt it.

So, that crying thing is very difficult. We’re told it’s good to cry every once in awhile to get it out of your system….they say it’s a “good cry”. Well, for me, a cry is never good. My head feels like the skin and muscles are being pulled away from my brain right now. And it won’t settle down, until I settle down. Poor Dave has tried to console me, but I don’t even know what I need. I guess a “good cry” and venting in my blog will have to suffice for now even though I know I won’t feel any better physically or mentally afterwards.

Fatigue, Shmatigue!

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I’m beginning to feel some energy coming back, or perhaps it’s because I have worked two days from home and took a real drive in the car. Getting back to a normal life is part of recovery, but fatigue is still evident.

The Brain Aneurysm Foundation has some really good explanations as to WHY one is so easily tired after an aneurysm. They say:“After an aneurysm, many people report that their energy is diminished after relatively little activity or effort. It is natural to want to return to previous activity levels as quickly as possible and many survivors become disturbed when fatigue gets in the way. Their frustration is often rooted in the belief that inactivity equals “laziness” or poor effort.”

Even though I’ve been through this process before, just on a different level, and KNOW the fatigue would be a part of it, it IS still frustrating. The BAF also says:“You should keep in mind that fatigue is a necessary part of the recovery process. Fatigue should be considered a positive sign of progress, rather than a negative sign that indicates poor effort, or ongoing disease process, or a “plateau” in the rehabilitation process.”

The following statement is the one I found to be the most telling and the best explanation on fatigue:“After a brain aneurysm, brain function is disrupted by damage to complex networks of brain cells (neurons). These networks must be repaired for improvement in function to take place, an internal process that occurs over time. The healing process takes energy that the brain did not have to expend before there was damage to the neural network. The brain works at recovering function 24 hours a day and in many different ways, including the reorganization of functions, the re-growth of damaged brain cells, and the cleaning up of debris. Without your knowledge, the brain diverts some of its energy to the process of healing, a process that significantly subtracts from available energy levels.”

It makes perfect sense that the brain needs energy for healing, and as a result, it diverts some energy usually used elsewhere to heal the brain and nerves. I get it now!

“It is important to emphasize that fatigue cannot be overcome by an act of willpower, or by making an extra effort. The human body knows when it needs rest and that rest is a restorative process.”

Now it’s a game of balancing being lazy with getting the rest I need.

One Month Mark

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I am calling today the one month mark after my surgery. I’m doing well and slowly recovering. The physical, visual aspects of the surgery are healing very well and if I’m able to get my hair to do something decent to cover the incision, one would never know I had a craniotomy a month ago.

Photo comparison from two days after surgery (left) to this morning.

FATIGUE: Fatigue is still an issue. I’m reading that the 3-month mark seems to be the time when most people start to feel they have a lot of their energy back. I need to walk more though to continue to build my energy. Also still need to rest more during the day, but it’s getting better.

By Dr. Glen Johnson, Clinical Neuropsychologist
Sleep is very important to the healing process. If you don’t sleep, you’re going to be tired throughout the day. If you’re tired throughout the day, your memory will get worse and you’ll be more cranky and irritable. Lack of sleep makes the other head injury symptoms much worse. Sleep also has an important role in physical healing.

Now I appear to be having some problems getting to sleep at night. Goody! I’m so tired I can’t keep my eyes open, but when I close my eyes, it’s more like a heavy “rest”, not a deep sleep. My brain seems to want to continue to “work” when I lay down at night.

PAIN:
Headaches still occur, but not with the frequency and intensity as they have previously. Usually mild pain meds take care of it…or, resting! The areas where the pins and screws are can send out mild shooting pains occasionally and if I touch the skull area it can wake up all of those nerves. I’m reading I should be able to feel the screws and pins and I think that’s what I’m feeling in one area. Not sure since the Dr. didn’t have my scans ready to show me at my 4-week follow up so I’m not sure where the pins and screws are located on my head/skull just yet.

NUMBNESS:
Oh, that’s still there and it still feels weird. The nerves are starting to heal so there’s a lot of “activity” there, especially if I touch my skull. I hear that could get more active. Those little buggers are highly sensitive. It’s not overly painful, just annoying.

STITCHES/INCISION:
The stitches are all gone and the incision is healing very well. It’s still tender and can be painful if I lay on it or accidentally scrape it with my hair brush or fingers. Umm…so, I’m trying not to do that! My hair is growing back nicely, although the hair at the top of my forehead it growing straight up. The hair along the side of my face is laying down flat. Wish I had more hair there, but I have no complaints! I love they did the incision right along my hair line. Thank you!

BRAIN FUNCTION:
Concentrating on one or more things at the same time can take a lot out of me. I DID drive briefly this week and am VERY aware that I need to concentrate and make sure I stay alert. I’ve been through this before and I know that will take time, but it always makes me nervous…and this is without after working a full day so I need to work up to feeling confident behind the wheel again.

I haven’t done a ton of reading for any great length of time, but when I do, I find it hard to focus and often times have to read the same sentence a few times to “understand” it. That only seems to happen when there is a lot of text on a page. Reading Twitter on my iPad seems to be okay. They are short snippets of text that I can read, process and move on.

Dave had me make a few minor graphic fixes to our brain aneurysm website and Facebook page. I was able to work on those on the computer, but did have a brain fade on where a certain tool was located that I needed to use in Photoshop. Again…I know that will get better with more frequency.

As I stated under the Fatigue bullet, when I get tired during recovery, concentrating and staying focused are more difficult. Been there….done that.

The physical healing is a good visual confirmation that I’m getting better, it’s the internal, brain healing that takes time. I need to be more patient with myself – as do others.

We had a rare, warm February day out today. Sunny, light winds and just beautiful. I had to get some fresh air. Being cooped up in the house in the winter is brutal…too much risk of falling down and hitting my head in icy conditions. The back deck was cleared of snow, so I sat on the back step and let the warmth of the sun wash over my face. I listened to the chickadees and gold finches flutter around me to the feeders and watch the ducks on the now-open water on the stream. I’m reminded of how fragile life is and how lucky I am to even be here. I might complain, I might get frustrated with the slow recovery process, but life is good.