Just Plain Weary

I cannot come close to explaining to you how tired I am.  Weary might come closer to the condition than just tired, but it has become all-consuming.

I am physically exhausted most of the time. Everything I do or attempt to do takes a much greater amount of effort and energy than it used to. Often because I have to start and stop a task several times because I forget what I am doing, what I need to get it done or how to do it. This is made worse if someone tries to talk to me while I am attempting it. This constant frustration, some days, leads me to not even want to try to do things.

The constant headache wears me down every day. I have always had a lot of headaches, even migraines every day for a couple years, but the FTD headache is a whole different animal. It is unrelenting and pain killers just don't seem to do much to alleviate them. The headache just doesn't go away; it is with me 24/7. Makes me more than a little grouchy as well and probably more than a little difficult to live with.

Sleep is another issue. Whatever you do, don't criticize someone with FTD for needing to sleep a lot. I have heard many caretakers say that they think their loved one sleeps all the time because they are bored or refuse to do anything. At least in my case, this is totally untrue.  Sleep comes fitfully. I often stay in bed for 12 hours, yet feel like I had very little sleep. Fortunately, having a couple cups of coffee does help me get going just as it does most people.We have learned to adapt our schedule to this problem and try not to schedule activities or appointments until after noon.  Fortunately, that works well for my husband as well. It would be worse if I didn't want to do things until after noon and he wanted to get them over with first thing.

Unfortunately, it is not just the physical exhaustion, is is also the emotional exhaustion. The sheer frustration of not being able to do things that were second nature to me can defeat me some days. It is also the frustration, as I have said before, of not being seen or heard. I truly think I am invisible some days and begin to wonder if maybe I am not speaking when I think I am. This happens in stores, offices and, yes, at home. Almost anywhere, with most anyone, when my voice starts stuttering or causing long pauses, people ignore me and look to my husband to do the talking.

On the home front, my husband allows me to make any decision I want to, as long it is the one he has already made. When he reads this, he is going to wonder what the heck I am talking about, because I am convinced he doesn't realize that this happens. When I do suggest or decide I want to do something else, he steers things right back to where he wanted. I finally give up, say that I don't care, just do whatever he wants. Later, he is convinced that what we ended up doing is what I wanted all along. In his defense, he suffers from anxiety issues and because of this, he desires to have everything planned out, just so, ahead of time. Most days, it doesn't feel worth the effort to try to help make the decisions or suggest something I have an interest in doing, I just say that I don't care, whatever he wants to do. For some reason, those frustrations add to my feelings of exhaustion.

Embarrassment adds to the exhaustion as well.  Yes, I know, in my head anyway, that I should not be embarrassed by my limitations, but when people snap at me or give me that looks of "Boy, this one is an idiot," I can't stop the feeling. One of my first symptoms that I had a problem was how confused I would get when attempting to make a cash transaction. So I learned to use my credit card instead, which made it easier. Unfortunately, now, even that confuses me, especially when it is somewhere that you have to slide your card and make all the entries yourself. The system is different from place to place and truly rattles me. Then, when the salesperson gives me that look or rudely barks the instructions, it defeats me and leaves me exhausted. Mental exhaustion is just as debilitating as physical exhaustion.

Some days, I think I would feel better if I could just sit and cry for a good while, that it would be cathartic.  Problem is, this damned disease won't let me cry anymore!

And.... yep, it all makes me grumpier and more difficult to live with.  That is why, when I read caregivers ranting about how uncooperative and irritable their loved one is and how they believe they are intentionally making the caregiver's life more difficult, I become enraged. Just like with a young baby, if they are crying, you check to make sure the diaper is dry, nothing is poking at them, that they aren't hungry, hot or cold, etc. The caregiver should be looking into what could possibly be making their loved one grumpy or difficult to deal with.

Now, thinking about all this, I am exhausted. Most likely, I will go somewhere and curl up in a semi-fetal position and try to escape. It never works, but I end up doing it a lot anyway.