Going Good!

Yesterday, I had an appointment with both my medical and eye doctors. I was nervous, as I had just come out of an emotionally and often physically difficult couple of weeks. I had no idea what the doctors would say, if I had progressed or if some things had gotten worse. I didn’t sleep much the night before. In fact, I often lie awake at night thinking about it all. Some nights, I concentrate on my body, noticing every minute detail that seems odd or out of place. When I find something, I wonder what it means. My biggest fear is still that I will have another stoke. Statistics say that ninety percent of stoke victims have another one within the first year following the initial stroke. I am doing everything I know to beat those odds, but still I think and worry. It has been two months and I am one-sixth of the way through the year. While never having been one to wish away time, I just want to get to 2013 as fast as possible, without another episode.

My doctors were both happy with my progress. There is still a long way to go, but I am heading in the right direction, and faster than they thought. The best visit was with the eye doctor. I had not seen her since early January, when I was really struggling and barely able to walk, even with the walker. She was very surprised when I walked in yesterday and that really made me feel great. The look on her face was amazing and made the difficulties of the last eight weeks so worth it. The swelling in my eyes and the pressure from my brain is gone, so now the remaining issues with my vision are brain related and will take some time, but she said I was healing faster than she expected. I have always loved proving people wrong, but never more than now.

While medically I am doing very well, other aspects are taking longer. I don’t like and can’t relax in crowded places. I don’t like to be around children or animals due to the unpredictability of movement and sound. I don’t like unfamiliar places. I am not very social these days and often feel very awkward. With certain people and in small groups, I am fine, but in a larger group, even if I know everyone, I feel myself crawling into a mental ball and hiding. I do sometimes force myself into these types of situations, as I am not about to become a person afraid to go out and I also know the only way through it is head on. But still, often times the fear wins. I have done the research and know why it happens, but these days, logic takes a backseat to emotional and instinctive need.

The thing I hate most, is people looking at me. When someone looks my direction, I feel they are looking AT me. I know they probably aren’t, and even if they are, I know it shouldn’t bother me, but I really can’t stand it. I am very self-conscious when I go anywhere and even if someone looks at me, or even through me, it makes me want to hide. Even if I am sitting down eating, I feel all others can see is a defective person and I want to scream. The old me loved attention, even actively sought it out. Now I prefer to avoid it. I know it is all in my head and I am making a big mountain out of a few grains of sand, but again, logic doesn’t help at the moment and I am putting myself in situations where I just have to deal with it and get past it.

So there is still a lot to deal with and figure out in the coming weeks and months, but the train is on the right track and chugging along steadily.

The End of the Beginning

I almost didn’t write that last post. I just felt that I didn’t really have anything positive to say at all. I was feeling down, frustrated and confused and against what I was feeling, I decided to write about what was going on and post it. I am so glad I did, because it has made a huge difference for me.

A comment was left by Rick, which reminded me of something I read when I first started reading about strokes, while I was still hooked up to IVs just a week after everything happened. In my usual all or nothing way of doing things, I started reading not just one book, but three. I was desperate to make some sense of what was going on and what was in store. And, of course, I was looking for the quick solution that would have me on my feet and back to normal in the shortest possible time.

In the book titled “Stronger After Stroke” by Peter Levine, I read all about my current situation, but what I read got lost and buried under the mountain of information. But thanks to Rick’s comment, it all came back and I realized what was happening.

A huge part of recovery involves what is known as “neuroplasticity”. Which is basically a rewiring of the brain. This is what allows the brain to re-learn functions that would normally be controlled by other parts of the brain, which are no longer functioning. It involves a lot of patience and repetition, not unlike learning a new language or how to play an instrument.  

A stroke kills cells in the brain. It is those dead cells that create all sorts of problems, in my case, walking, balance and other things. Just outside the dead zone is an area known as the penumbra. The penumbra is an area of cells that have been “stunned” during the stoke. They aren’t dead, but they aren’t working either. Whether they live or die depends on a number of factors including medical treatment. The stunned cells can become active again anywhere from a few hours to a few months after the stroke. As they become active, the areas of the body those cells control can experience some rapid advances during recovery. Each day, I saw improvements and it was great for my recovery ego and motivation.

Once the stunned cells have reengaged, the rapid part of the recovery can come to what seems like a grinding halt. It is a time when many people get frustrated and even give up. It is a feeling I can completely understand. In my case, each day seemed to hold huge jumps in my progress and then two weeks ago, I hit a wall.

Two weeks may seem like a short time, but when you are recovering from anything major, and the feelings that come along with it, two weeks can feel like an eternity. I spent each minute stewing in the depression of not moving forward and imagining my life with disabilities. I have never needed glasses and I found the whole idea of life spent in this condition difficult to accept and understand. I would try to walk and hit walls. My vision was getting more and more doubled by the day. I got to a point where I just stayed in bed. I would wake up to find I had been crying in my sleep.

Then I read that comment and it triggered a memory. It took me a bit to search and find what I was looking for but after reading it, the understanding fell into place and I realized I was at a major fork in the road. Recovery would not be easy anymore. It is strange to think that weeks ago I thought and blogged about my recovery and how it was going in baby steps. Looking back, it was taking place in leaps and bounds. As the book explained, it is not the beginning of the end, it is the end of the beginning and now the real work will start.

On Monday, I joined a gym and have started working out with weights and machined to push my body in any way I can. I know results will come in millimeters and at a snail’s pace as the main work of rewiring my brain starts, but as long as it comes, I can deal with it. 

Before And After

I think one of the hardest parts of recovery, is the constant and pretty much unavoidable “before and after” comparison. When I got home, I would spend quite a lot of time remembering the ease with which I used to do pretty much anything. I didn’t realize just how much I took for granted, even everyday things like getting a bowl of cereal, drink of water, or even the simple act of standing, confident I would not fall over. Making those comparisons is a guarantees way to go crazy and work oneself into a pretty big depression. No matter how much I had improved after the stroke, I always fell short of the pre-stroke me.

I quickly realized I had to change my thinking a bit. Instead of comparing myself with my abilities prior to the stroke, I tried to start comparing myself from that date. That was the day when my brain forgot how to walk, when my balance deserted me, and my body became a stranger. I remember being in the hospital, taking those four or five steps toward the sofa, the ones that convinced the doctors I was ready to go home, and feeling so happy I had accomplished something so major.

I have always tried to remember where I started. I remember trying to stand and having no clue how to control my legs. I remember those first steps. I remember when I got home and walked around the compound and how exhausting it was to do it just one time. Then there was the time I walked without the walker. Then I walked out of the compound, each accomplishment making me feel more confident and giving me a measurable increase in my ability, each one taking me closer to how I was before that fateful night.

During the past two weeks, I have not done so well. My vision, balance and walking seem to be working against me. It is not the normal little bit forward, little bit back that I have become used to. This feels like I am either not making any improvement at all, or I am getting worse. I do have moments things seem kind of improved, but more and more I seem to be reverting back and experiencing the types of things I did shortly after coming home. It is taking a toll on my psyche. I find myself more and more depressed and wanting to stay in bed. I sleep a lot more now and am not really so interested in going outside.

I am not really sure what is going on or why this is happening. I don’t know what to do. I am worried that maybe this is it and I will spend the rest of my life with this vision and balance. I wonder what kind of job I will hold. I worry about how I will survive in the future. My vision doesn’t let me read and watching TV or working on the computer only seem to make them worse. I don’t know how to improve my balance, which is at a point where I have to psych myself up before getting out of bed or off the sofa. I am losing my confidence and losing and positive attitude along with it. I don’t know what to do.

The Choice

I don’t remember much of the first few hours or days following the stroke, but I do have one memory I keep reviewing. It is a memory that involves my dad and a conversation we had during that time.

My dad actually passed away almost exactly ten years ago. I am not sure I have ever written publicly about my dad, as it is one of those topics that is extremely personal and like most father-son relationships, extremely complex. In spite, or maybe because of the fact we are so similar in so many ways, we never really understood or got on well with each other. But, in the last two years or so of his life, we finally found some common ground and had real conversations. Until several hours before his death, I never saw my dad during the time after we finally let down our guards, let go of the past and began seeing each other as people. We were having a good relationship, but it was via the phone. I was in Amsterdam and he was in Arizona. Maybe it was for the best. Maybe being on the phone forced us to actually talk instead of sitting silent in a room as we had done so many times.

After my dad passed away, I would have very strong feelings that he was near me. It would be so strong, that I could point to where he was and at times I also felt he was with my grandmother and granddad, his parents. Given the complexity of our history and relationship, I found it so odd that I would feel him so close. In many ways, it has changed my relationship with him in a way I am not yet sure how to describe. About a year after his death, I remember having a sort of conversation with him in my head, as many people do with people who have passed on, and I remember thinking that my life was great, going in a good direction and I was happy. That was the last time I felt his presence.

Sometime in the first hours or days in the hospital, he was there. In spirit or in my head as a dream, I can’t tell you and I guess it all depends on what you believe. But we spoke and he told me I had a choice to make. Did I want to live or die? He said it was up to me. I remember my answer. I said “I don’t know.” I asked him what he thought. I asked if things would be better if I were where he was. He didn’t answer that question. He told me there was a lot left for me to do, but I had to decide.

I don’t remember making the decision, but I am here. Real or imagined, it is a scene that I often play in my mind. I understand the “I don’t know” answer. The past few years have been some of the most difficult of my life. As I have already blogged, I lost everything I worked for, everything I ever thought I wanted. Now, here I am in Tanzania, all but unemployed, living in Ulco’s house and more unsure about what the future holds than ever before. I remember thinking that if I chose to die, I could put all the frustrations and painful experiences in the past. I was given the choice. It was entirely up to me, and in that moment, I didn’t know, I didn’t think about what anyone else would think or feel. The choice was mine and mine alone, but I kept hearing my dad say that there is still so much left for me ­­­to do.

I believe I am here because I made the choice to live, to not give up, and as I have also learned and blogged about, living is more than just not being dead. It means to embrace life and all that comes with it. So now I find myself once again re-evaluating my life and its contents, trying to figure out what to do. I don’t believe I have gone through this and the rest of the trials of my life for no reason. And while I really do not believe everything happens for the best, I do believe there is a lesson in everything. Now I just need to find out what that lesson is and I am both scared and excited.

All I Can Eat

I have always been a big eater. When I was a child, I would eat everything on my plate, finish off everyone else’s and then head for whatever was lingering in the pans in the kitchen. When we would go to a barbeque or a friend’s house for dinner, my mom would often be mortified as I attacked food as though it were my first and last meal. Fortunately foe me, I have always had a high metabolism and nothing I have ever eaten has ever made a difference to my weight.

Despite being blessed with the good fortune of eating whatever I want without any issues at all, I have always eaten pretty healthy. I have never really had a sweet tooth, almost never eat dessert and mostly stay away from read meat and keep my cholesterol intake in check. Not really sure why, just have always been that way.

But I have found that my new body is a different story, at least for now. And if it keeps up, I will have a new body indeed. Since getting out of the hospital, I have eating and eating and eating some more. Not necessarily big portions, but all day long, there seems to be something going into my mouth.

A week ago, I went to bed and felt ill and could not get comfortable. I felt like that every time I went to bed since the hiccups and vomiting stopped. But that night my stomach felt more uncomfortable than normal. I was concentrating on not having to get out of bed and be physically sick when I reached down to give my belly a little rub and make it feel better. I was stunned. My stomach was huge and so full of food, it was hard. As though I were pregnant. I looked down and say an enormous stomach. The skin was stretched so tight, it looked like it was about to pop. I had never experiences that before and was a bit confused. Was it a side effect of the medication? Then I thought about what I had eaten in the course of the day; two bowls of cereal, four pieces of toast – two with Nutella and two with cheese – some brownies, some plain yoghurt, a couple of bananas, a bowl of fresh mango and some almonds. That was all before lunch. The rest of the day included eight sandwiches, more brownies, yoghurt, more fruit, the dinner for two that the housekeeper made for Ulco and me but which I ate myself and then I topped it off with a banana smoothie and a goodnight brownie.

So there I was, lying in bed, rubbing my rock hard stomach stuffed so full of food I was uncomfortable and guess what I was thinking about? Pizza. I was so in the mood for pizza. And then I realized what my problem was. Since the phase of getting physically ill had passed, I no longer ever feel full. I never feel really hungry either. I just have a constant feeling of needing that last little bit of food to feel full. Not much, just a sandwich, a piece of pizza or rack of lamb and pile of mashed potatoes.

That means that now, I have to be very careful with my diet. I need to eat enough to get the calories I need and that is not so easy. I learned that a healing brain burns four times the calories as a normal, healthy one and any physical activity takes at least twice the energy as it did before. So I am trying to figure out how to make sure I have enough to eat without over doing it. And of course, I love food. I have always been a person that could nibble all day and now, for the first time in my life, I have to think about it. I went to a café the other night with a friend for a coffee, saw the menu and decided I wanted a cheeseburger with avocado and a side of home fries. I almost ordered, but then that voice inside my head reminded me that less than an hour earlier, I had eaten two large bowls of pasta.

To make matters worse, I have developed a HUGE appetite for almost anything made of chocolate. Mousse, cake, brownies, anything at all. It is so not me, but suddenly I can’t get through the day without something super sweet.

The old me would have no physical issue eating like this, but my new body is another story. For the most part, since I have been home, I have been eating anything and everything and moving about one hour a day. I never really gave it any thought until this morning. I went to put on a pair of trousers I wore just a few weeks ago to and I could not button them. For the first time in my life, I have gained weight and cannot fit into my clothes. I went on the scale and discovered I have put on over eight kilos (about twenty pounds). I have never weighed this much in my life and I have a feeling that, in the meantime at least, I will continue to expand. Part of me is happy about it, I have always been on the skinny side, but I hope this isn’t permanent or I really have a struggle ahead of me. Just thinking about it makes me want to nibble.

And there isn’t an Oreo in the house. 

The Dance

Stroke recovery is a dance of moving forward and then back to a silent rhythm that seems to make no sense. I just had three and a half great days. I was walking very well and my vision would sometimes let me read without squinting or increasing the font. Yesterday afternoon I could feel the shift coming, similar, I guess, to how someone with arthritis knows the weather is going to change. It can’t be seen and there is no real evidence of the change, but you know for a fact it is coming.

Last night when I went to bed, I had that strange yet familiar feeling that I was falling and floating and I could feel the dizziness takeover my body. I woke up this morning and discovered that the game of recovery had sent me back three spaces. As I type this, with the view in Word set to 500% and my face about  a foot or so from the screen, I have to strain to make out the letters and see my words. Watching YV today is somewhat nauseating if I use both eyes. My balance is way out of whack and instead of doing a bit of work today, I am on the sofa waiting for the room to stop spinning.

On my good days, I forget that a not so good day is coming. There isn’t really anything I can do to avoid it, it is just the way the brain works and the way recovery goes. I wish there as something I could do like eat more fruit or sugar, have more water or even meditate, but nothing but patience seems to work.

While it is frustrating, I am doing my best to stay positive, knowing that the change to feeling better again is on the way. Maybe today, maybe not, but it is coming and so I will wait for it like people wait for a late train or bus. Sooner or later, it will arrive. The process reminds me of a saying I read and fell in love with in the Lotus Temple in New Delhi. I don’t know it exactly, but it reads something like “If things are good, so not rejoice too loudly and if things are bad, so not mourn too deeply. They both shall pass.”

One thing I have learned, is that each time I am having a good period, it is better than the previous good period, so even though I know it might look and feel as though I am moving backwards, I know that really I am moving ahead.