There are some problems that a stroke survivor faces that some people (even doctors) do not seem to be able to grasp. I have been to physical therapists, neurologists, speech therapists and psychologists and none of them (at least on the surface of what they say) seem to really get the fact that there are real problems that we face on a daily basis (some days are worse than others) that are not physical. Some people reading my blog will understand exactly what I am saying: there is a "spacey" feeling that cannot really be quantified. That is, it is hard to put into words and almost impossible to describe but it is a real problem. Sometimes when I wake up I just have a "far away" feeling that cannot really be explained, but when that feeling is there it is hard to concentrate, it is hard to find the right words to communicate clearly and it is hard to get my thoughts together. Are there physical problems? Sometimes (when that "spacey" feeling is at its worst, my leg also seems weaker and I seem to struggle with my balance more). But, the problem is not always physical but it is just a feeling. If I sound as if I am griping, ok, I probably am; but, I just want to communicate to people that just because a stroke survivor looks great, there might be problems that no one else can see.
For the last few weeks I have been experiencing some pretty terrible headaches; not the kind that you can relieve by rubbing your temples or taking Tylenol, but headaches that radiate from the back of my head. It seems as though I have tried several things to relieve them: taking naps, lying down on heating pads, taking Tylenol, turning the lights of, etc. but nothing seems to help. Now, I don't have them all the time, only a few days a week and I can tell that they are more from muscle tightness than anything else. I have been instructed to go the ER if they flare up again, because of my past history of headaches before my stroke, but most likely it is due to the muscles that were cut in the back of my head for the Craniotomy. I would say that most days I do not struggle with headaches at all; but, the days I do have headaches they are a doozy. I don't have blurred vision with them or sensitivity to light or sound; it just hurts. As I look back over the past 3+ years I realize...
Amen. Having bipolar II disorder and hypothyroidism, I understand all too well.
ReplyDeleteYes I know exactly what you are talking about. It is better for me now, but every once in a while it is not gone.
ReplyDeleteWhat was surprisingly helpful was that I got sent for mindful meditation by my Social Worker which was good is so many different ways much to my surprise. I then started doing Christian meditation too. I find them complimentary and not an either or thing.
The mindful meditation is a technique that helps with stress, pain management and focus and helps one to isolate concentration on particular tasks or bod parts. It helps with getting on with the task at hand even when feeling "spacey".
Linda
I had a brainstem stroke and know what you are talking about. These "spacy" days have become less frequent in the 7 years since my stroke. Hang in there.
ReplyDeleteLittle snippets like this are helpful to me because my husband had a stroke this year. He is still "there" mentally, but yet something is different, something that neither of us can quantify. I know he has moments or days like that, and it's helpful for me to understand him just a little bit more.
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