Learning to Walk

Yesterday was one of those days when being under the covers, hiding from the world seems like the best plan. I went to the eye doctor yesterday and while I knew my eyes weren’t better yet, the word “surgery” threw a wrench in my emotional gears. I have always had perfect eyesight, the only person in my family not in glasses. Every time I get my eyes checked, I am told I will need glasses in two years and I never do. I have been told that since I was 20. And now someone mentioned surgery.

I am good at getting bad news. I am not the kind of person to burst out into tears or start shouting at a doctor. I take it in calmly and deal with it over a longer period of time. Then I might get emotional. I haven’t really gotten emotional over the stroke yet. Part of me wants to, but another part just isn’t allowing it.

So many people tell me to be positive and stay upbeat, not to let myself feel depressed. But I am learning that feeling the depression can be a good thing. It is there, and ignoring it, for me, is like stuffing a bunch of things in a closet. Sooner or later, the door will open and it will all come pouring out in a huge mess.  So, I am taking a different approach. I am letting myself see the depression and even feel it. I let myself wallow in it for a bit and then decide that enough is enough and I make the decision now to dwell in it. I am realizing more and more that while this stroke was not my choice, and as far as the doctors can find, not my fault, it is my choice as to how I deal with it and it is my fault if I let it win.

I have done some research online, not always a wise thing to do so I have stopped. I saw statistics that ten percent of people who have this type of stoke, a CVA or cerebrovascular accident, die within a year. I have also read that two-thirds never fully recover and have some problems. I was shocked and devastated at first. But I realized and decided that I am not ten percent or two-thirds of anything. I am one hundred percent me and I will to let myself or my recovery be defined by some numbers I don’t believe apply to me.

I wrote a couple of months ago about the personal journey I have been talking, trying to live in the moment and realizing the past is just a memory and the future is an unknown illusion. This is really being put to the test now. I know that nothing is guaranteed. I only know that I have the choice to make. I can choose victory, I can choose to fight or I can choose not to. It may seem silly, but in some ways, choosing not to seems so much easier. Sometimes I just want to sit on the sofa and be angry. Sometimes I wish I could take everything breakable in the house and smash it against a wall. Sometimes I want to scream, yell and hit. Sometimes I want to know why this happened to me, not someone else. Why didn’t this happen to a criminal or someone who spends their life hurting people or doing bad things. Sometimes I don’t want to eat or take my medicine or shower or exercise. Sometimes I want people to leave me alone and stop telling me to be positive or that I will get through it. Sometimes I just want it all to go away.

But then there is something else inside of me. Something that pulls me forward and sees me through. It is sometimes a little voice and sometimes no more than the shadow of a feeling.

Yesterday, after lunch, I decided I was going to sit and watch TV and feel sorry for myself. I was well into my pity party for one when my nurse arrived for my walking exercises. Normally when he arrives, I am up and out and eager to get going. Not yesterday. I all but ignored him the first fifteen minutes. I was going through the motions of pretending to watch TV, hoping he would see how sad and depressed I was and leave me alone. He didn’t. So with a bit of anger and a lot of resentment, I sut on my flip flops, grabbed my walker and went outside.

The first round of the compound was horrible. My balance was off, my legs would not cooperate and I spent the first ten or fifteen minutes proving to myself why I should be on the sofa and why the exercise was a waste of time. Then my nurse came up with a stupid idea. He said I should walk without my walker. The man obviously had not been paying attention. Could he not see that I could barely stand? Could he not tell that I was in no shape at all to walk on my own. We went to the grass, where I could fall without getting hurt. I was so looking forward to falling face down in the grass. Maybe if I did that, he would end the session and I could get back to the more important business of feeling angry and depressed.

But then it happened. I walked. I walked from my walker about twenty meters to a tree and back. And then I did it again. And again. And then I went around the compound a few times. I almost lost my balance a few times, but I didn’t fall. I walk like a one year old toddler, but I didn’t and don’t care. I can walk. Since then, I have only used the walker one time, and that was when I woke up this morning, as it takes me about twenty minutes or so to get my balance back on track.

Today, I feel better. The depression is still there, but I look at the facts now instead of my anger and fears. I could not walk a few days ago and now I can. Yesterday I needed a walker and now I don’t.

Going to go now. I have some walking to do!

Another Day...

This morning, I had a follow-up appointment with the eye doctor. I had an exam last week and in the time between, some of the swelling had gone down, so that is good news. I have been wearing an eye-patch for the past two weeks, but now I am trying to get along without it, so my eyes can start trying to work together and hopefully correct or improve my vision. If it is not better in three months, then surgery might be an option.

One of the big mysteries is what caused the stroke. I have been tested for everything under the sun and nothing has come back as a possible cause. It makes me nervous since not knowing the cause makes it harder to figure out how to prevent anything further happening. I am not the fittest person, but I am fitter than most. I also don’t smoke, do drugs or drink heavily. I eat pretty healthy, have no history of high blood pressure, hypertension, diabetes or anything else that might point to risk.

I have also noticed that my voice has changed. Not sure if that is temporary or not. I find it strange that I don’t sound like myself, at least not to me. Today I discovered that I can’t sneeze. I feel like I will, but then it doesn’t happen. Sometimes I will have a sort of half-cough – coughing is another thing I can’t do right now – but usually the feeling to sneeze just vanishes.

Today I feel a bit better emotionally than yesterday. I will have some lunch and then strap on the leg weights and do my exercises before going outside to walk. The walking is going a little better, some days definitely better than others, but I have to remind myself that two weeks ago, I could not walk at all.

Right now my biggest obstacles are not letting the boredom get to me, not letting the frustration and depression take hold and also not giving into the almost overwhelming desire to stay in bed and sleep all day. 

Having a Bad Day

The last couple of weeks have been intense, to say the least. So far, I have managed not to get sad or depressed. That is, until today. I woke up this morning with this heavy feeling that is almost suffocating. I don’t know why it happened today, but here it is.

Yesterday was a great day. I did my exercises for my arms and legs and then went out walking on the compound. The first day I did one round, then three and yesterday I did seven. Today, I am not doing anything. I just don’t feel like it. I took a couple of naps and each time woke up crying. I feel silly and don’t know how to make the feeling stop. Normally, I would go for a walk on the beach, but right now am trapped in a house. I want to lose myself behind my camera, but that is not an option right now. I can’t really read and even writing this, I have the screen view at 500% just so I can see.

I think the part that bothers me is the unknown timeline. If you break a leg, you know it is six weeks and even if it is frustrating, there is an end date, something to count down to. I don’t have that. I am just waiting for something that might happen in a month or six months. I feel imprisoned in this body I don’t understand. My mind is very clear, I just can’t connect what I want to do with my body. Sometimes when walking, my right leg just refuses to move and I get stuck for a few seconds.

So, here I am with a lot of negative thoughts today and way too much time to think them. I wonder how long this will all take. And I wonder if I really will recover. Not everyone does. I wonder if this is temporary or my life. I know I shouldn’t think these things, but I am having a hard time silencing the voices in my head. I hope this feeling passes soon… 

Stroke

December 23 seemed like any other day, with the only difference being that I woke up with a headache at the base of my skull on the right side. All day, it was there, just a steady, dull pain. I didn’t think much of it and figured it was due to sitting wrong and spending so much time on my laptop. It eased off a few times during the day, but then would come back. It was really more uncomfortable than anything. I was having trouble concentrating and finally, around 11pm, decided to go to bed. I couldn’t get comfortable and around midnight, got up and took a couple of paracetomol. An hour later, I was still awake when something happened.

I wasn’t sure what was going on, but I knew something was not right. I had a hard time balancing, but I thought I was just really tired and had stood up too fast. I got to the room where Ulco was on his computer and when I reached the door, I said “I think something is wrong.” The look on his face told me something really was wrong. He ran over, helped me to the sofa and called the doctor. Fifteen minutes later, I was at the clinic hooked up to a heart monitor, which showed nothing odd. My blood pressure was normal and after being checked out, the doc decided I should go home and then go to a hospital first thing in the morning. And then the extreme vomiting started and as mortified as I would usually be in such a situation, I really didn’t care. I knew then that things were bad.

The doctor ordered Ulco to take me immediately to Aga Khan hospital for further treatment and an MRI. We arrived there around 3:30am. I don’t remember too much about the next hours, just lots of vomiting and then an MRI. I remember not being able to sit up and I remember having an IV in my hand. Ulco came and went organizing stuff, but that is all I know.

The doctor came back with the preliminary results of the MRI and said there were no abnormalities and they would do more tests to see what was causing the problems. Some time later, the doctor came back and said that the MRI had indeed shown something. A one centimeter area of my cerebellum, the part of the brain at the top of the brain stem that controls equilibrium, motor movement and balance, that had been damaged due to a burst blood vessel. It was a tiny vessel and the area of damage was small, but they wanted to keep me in the hospital for observation.

The doctors came and went and the IVs kept coming and although they had explained some of what was happening, I still wasn’t really clear. Later that day, Christmas Eve, I started having horrible hiccups. They would be so intense that the entire bed would move and my chest would seize and I would not be able to breathe for several seconds. They got progressively worse and eventually I had to have a tube inserted through my nose and into my stomach. It took a few attempts and my nose was gushing blood. They stopped and brought in another nurse that was able to do it with relative ease. The hiccups stopped for the night, but I felt like I was choking the entire time.

Either due to a mistake by the nurses or my own moving around in the night, the bag at the end of the tube in my stomach was not there in the morning and the left side of my bed was covered in the black liquid from my stomach. It was all down my left side and the nurses took me into the shower and for the first time, I had to be bathed by someone else. Again, although it has always been one of my worst fears to be that helpless, I didn’t care. I was tired, I was weak, I had a tube coming out of my nose, I couldn’t stand and I still did not really know what was going on.

The whole next day, I was given medication, had my vitals checked regularly and was on the occasional IV drip. My vitals were normal, no fever and normal blood pressure. Neither my balance nor hiccups improved. The tube came out of my stomach and I was given very strict dietary instructions. No more than 100ml of food every hour, banana, rice and yoghurt. I was unable to swallow bread, even when it was wet with tea or water. Still, the hiccups remained.

On the second full day, I asked to go home. I had had no fever and my blood pressure was still normal. I was having two IV drips a day and a few other IV drugs. I figured I could do that as an outpatient as I lived just a few minutes from the hospital. That was when the doctor finally told me what was happening.

A part of my brain was dead and would not recover. The activities handles by the part of the cerebellum that was now dead would be taken over by other parts of the brain. It would take time but they said I should have a full recovery. Weeks, months, the time was anyone’s guess, but it would not be quick. I also noticed that my body seemed to be split into two perfect halves. I noticed this when showering the second time when I was a bit more aware. My entire left side, from the top of my skull down to my toes is numb. I can feel some things, like texture, but I feel no temperature difference or pain. Ice cold water on my left side feels warm. It I touch something very hot, like a cup of tea, I will get really intense tingling. My right side is overly sensitive to temperature and pain. So when showering, I have to set everything according to my right side. Urinating is also a challenge, as I don’t feel the need to go until I really have to go. That is controlled by using my hand to put pressure on my bladder every couple of hours to check. In addition to this, I have extreme vertical double vision and now spend many hours a day wearing an eye patch. There is some swelling in my right eye, but that should also correct itself over the next few months.

I spent a few more days in hospital, and then after a week, was released to go home. That was more intense than I thought. It is one thing to deal with strange things in a strange place, it is easy to compartmentalize and deal with. But getting home and realizing I was indeed not the same was and is difficult.

I spent the week after being released in outpatient treatment. The hiccups stayed making it impossible to sleep, and they would continue with increased intensity until I would vomit and then they would disappear for a couple of hours before starting again. I needed to do exercise to learn to walk again and keep my leg strength up, but the hiccups left me too exhausted and the vomiting meant I had no food in my system.

After five days of outpatient treatment, the hiccups finally vanished. That was just two days ago. My stomach still is very sore and I am paranoid about whatever I eat, as I don’t want to retrigger them. Two weeks of hiccups almost cost me my sanity.

Now I am doing my exercises and learning to balance and walk again. I still have no feeling on the left side of my body. And now, the depression is lingering nearby. I try to ignore it. It is just so frustrating to be trapped in this strange body. It doesn’t feel like my body or act like it. I have to concentrate to get my legs to move the way I want if I wish to walk. I am using a walker for that as well. Like a baby, if I am lying down, I can move my legs any way I like. Adjusting and repositioning, but when it comes to walking, they have a mind of their own.

I hate feeling helpless. I hate that I need help with basic things. I hate being confined to the house and this sofa. Even writing is no longer fun, but a lot of work, getting my fingers to hit the right keys and being able to read what is on the screen.

Everyday it is getting better. A little here and little there. Anyone who knows me knows that patience is not my strong suit. I want what I want and I want it now. The thought it might take months is sometimes overwhelming, but I have to just do what I can and give it time.

Right now, everyday is an adventure, some better than others, and I am learning that even baby steps can be big leaps.