Have I mentioned the headaches in previous blogs? I truly cannot remember, but if I did, it is worth mentioning again. I have suffered from migraines all my life and firmly believed there was nothing worse. Now, I know I am wrong. These FTD headaches are much worse and they continue for days at a time.
It is difficult to explain these headaches. Mine start in the back of my head, and when they are first coming on, my head will actually move forward when the pains hit. It feels like someone has pounded a large hot nail into my skull with just one hit. These pains can come seconds apart or minutes. Eventually, thank God, the headaches go beyond this stage, but then, the entire left side and top of my head will hurt. I have not been able to correlate the headaches to anything else going on with me, neither stress nor diet. Medications don't seem to help. Well, I should not say that as a broad fact. I will not take pain medicines stronger than Tylenol or Advil. Any of the prescription pain medications make my brain more confused than it is usually.
As I type this, it has now been four days. Thankfully, not all of them last this long, but I have had them last longer than a week. They succeed in limiting my lifestyle even more than this disease does on a regular basis. It becomes difficult to concentrate on anything at all.
The reason these headaches are weighing on my mind this week, in addition to experiencing the pain. I am going to have disappoint a friend this weekend. I was planning on attending her wedding, not the reception, but at least the ceremony itself. The first thing that started to worry me was the headache and if it would ease up before the day. Today, to help me get comfortable with going, my husband drove me to the chapel where it will be held. Guess what? No parking nearby!! Not even handicapped parking that we could find that would be less than the equivalent of about a two block walk. Even using my cane, I would not be able to walk that far without falling at least once. I just can't do it.
One of the first things I had to give up to this disease was driving, even before I could no longer work. My husband, God bless him, would drive me to work and return at the end of the day to drive me home. I missed my independence that I lost by not being able to jump in the car and going somewhere, without coordinating with someone to drive me. I never dreamed that I would have to also give up walking. I gave up the resistance to a cane about six or eight months ago. I am getting to the point that I am considering a walker. It is difficult to explain to anyone that it is not that my legs are getting weaker. The best way I can describe it is that the signals from my brain no longer get to my feet and legs to tell them to move.
I detest disappointing people. I have been the caretaker and mediator all my life, since I was a small child, the one who tried to keep things calm at home and everywhere else. It is just not in my makeup to disappoint people without disappointing myself even more. I am though, thankfully, aware enough of my limitations to not put myself in danger in order to prevent disappointing.
Bottom line, this week, two big aches. One, literally a headache, the other breaks my heart. I am not sure which is worse...
Thursday, June 18, 2015
Sunday, June 7, 2015
Dazed and Discombolulated
"Dementia Daze." I read this name as a description of the uncomfortable feeling we get when things are confusing to us. Of course, just about anything can trigger this.
It happens to me in large groups of people. Bear in mind, to me, a large group of people is three or more, especially if there is someone in the group whom I do not know. It just throws me off my game. My speech abilities are fairly good when around one or two people with whom I am comfortable. Add in a couple more people, or someone I am not totally comfortable with, the stuttering and inability to think of words or concepts totally kicks into high gear. Of course, then I feel embarrassed which leads to even more of the same. This leaves me totally dazed... unable to think, unable to remember the layout of the place I am, and totally uncomfortable.
It certainly happens when someone is trying to explain something new to me. However, as I keep reminding people, it doesn't help me if you speak louder or keep repeating what you want me to understand. That just frustrates and confuses me even more. It happens more and more when I am watching television. I avoid shows that are complicated in plot, but when I can't, I distract myself by doing something with my hands. This keeps me from getting too deep into the plot and even though this doesn't make sense to someone without FTD, for me it sometimes helps.
The scary part to me is I am starting to have trouble reading. Again, I can't deal with complicated plots or too many characters to keep track of. I am reduced to reading books that I used to consider a waste of time and brain power. I find myself, more and more, having to go back and reread sections that I have already read. This is scary to me, not only because I have always loved to read, but because the two abilities that this disease had not stolen from me yet is the ability to read and to write. I am terrified of losing them.
Toward the end of this past week, I ended up spending almost the entire day and evening curled up on my bed in a fetal position just watching the numbers change on the clock. The next day, I forced myself to at least stay off the bed and to do a couple small things. Why was I in such a dazed state? What I figured out is that I had been wanting, for a couple weeks, to go shopping at a local department store for a few things. We actually went there either late last week or early this week (can't remember exactly), but my husband was only interested in a quick in and out trip to buy himself new jeans. He promised we would come back on another day to shop for what I wanted.
I didn't want to keep asking him because I didn't want to be a pest and ask everyday. Each day, I thought we might be going but we still haven't. The one day I began to approach the subject, I asked what he had planned for the day and was told there were some really good sports on television. That made me feel like I am not important at all. Logically, I know he keeps delaying it because he hates to shop, but an FTD mind does not work the same as one without. It's not like I just want to browse, I am not a shopper either... hate it in fact. It is a good reason why I want to go this time. I have lost enough weight that none of my summer clothes fit. Not sure men would understand that, but all the women will. I could have asked my sister to take me, she would do it in a minute without even thinking about it. For some reason, though, I felt the need for him to help me select my purchases this time.
Bottom line of this blog entry is that it doesn't take much to put us, or at least me, in that "daze" or to discombobulate us. (Not sure that is an actual word, but I love it.) Anything new or out of my comfort zone, a change in my normal schedule, meeting new people, going new places, eating in a noisy restaurant, shopping in an unfamiliar store... they can all do it. Sometimes it seems like it is for no reason at all and takes me a while to put my finger on what it is. Sometimes I can't figure it out, but that doesn't even matter. Even if I know why, it doesn't help me shake that dazed, confused and uncomfortable feeling.
It happens to me in large groups of people. Bear in mind, to me, a large group of people is three or more, especially if there is someone in the group whom I do not know. It just throws me off my game. My speech abilities are fairly good when around one or two people with whom I am comfortable. Add in a couple more people, or someone I am not totally comfortable with, the stuttering and inability to think of words or concepts totally kicks into high gear. Of course, then I feel embarrassed which leads to even more of the same. This leaves me totally dazed... unable to think, unable to remember the layout of the place I am, and totally uncomfortable.
It certainly happens when someone is trying to explain something new to me. However, as I keep reminding people, it doesn't help me if you speak louder or keep repeating what you want me to understand. That just frustrates and confuses me even more. It happens more and more when I am watching television. I avoid shows that are complicated in plot, but when I can't, I distract myself by doing something with my hands. This keeps me from getting too deep into the plot and even though this doesn't make sense to someone without FTD, for me it sometimes helps.
The scary part to me is I am starting to have trouble reading. Again, I can't deal with complicated plots or too many characters to keep track of. I am reduced to reading books that I used to consider a waste of time and brain power. I find myself, more and more, having to go back and reread sections that I have already read. This is scary to me, not only because I have always loved to read, but because the two abilities that this disease had not stolen from me yet is the ability to read and to write. I am terrified of losing them.
Toward the end of this past week, I ended up spending almost the entire day and evening curled up on my bed in a fetal position just watching the numbers change on the clock. The next day, I forced myself to at least stay off the bed and to do a couple small things. Why was I in such a dazed state? What I figured out is that I had been wanting, for a couple weeks, to go shopping at a local department store for a few things. We actually went there either late last week or early this week (can't remember exactly), but my husband was only interested in a quick in and out trip to buy himself new jeans. He promised we would come back on another day to shop for what I wanted.
I didn't want to keep asking him because I didn't want to be a pest and ask everyday. Each day, I thought we might be going but we still haven't. The one day I began to approach the subject, I asked what he had planned for the day and was told there were some really good sports on television. That made me feel like I am not important at all. Logically, I know he keeps delaying it because he hates to shop, but an FTD mind does not work the same as one without. It's not like I just want to browse, I am not a shopper either... hate it in fact. It is a good reason why I want to go this time. I have lost enough weight that none of my summer clothes fit. Not sure men would understand that, but all the women will. I could have asked my sister to take me, she would do it in a minute without even thinking about it. For some reason, though, I felt the need for him to help me select my purchases this time.
Bottom line of this blog entry is that it doesn't take much to put us, or at least me, in that "daze" or to discombobulate us. (Not sure that is an actual word, but I love it.) Anything new or out of my comfort zone, a change in my normal schedule, meeting new people, going new places, eating in a noisy restaurant, shopping in an unfamiliar store... they can all do it. Sometimes it seems like it is for no reason at all and takes me a while to put my finger on what it is. Sometimes I can't figure it out, but that doesn't even matter. Even if I know why, it doesn't help me shake that dazed, confused and uncomfortable feeling.
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