It is obvious that it can be difficult to celebrate holidays and birthdays when you know you have an incurable disease. Sometimes you just don't feel well enough or don't have the necessary energy to prepare for or even enjoy the celebrations.
At one time, I had a fascinating and fun job working in the newsroom of a fairly large newspaper. One of my responsibilities was to edit all the obituaries. I was shocked during the weeks after Christmas and New Year's by the much larger than normal number of obits. One of the funeral directors explained to me that many people struggling with a life-threatening illness are desperate to make it through a special event. It can be the holidays, a wedding, graduation, anniversary or anything meaningful to them. They rally all their energy to make it through but when the event is over, that extra bit of energy goes with it and they surrender to the illness. If you let it, it can make you feel pretty sad. On the other hand, they had that last celebration, most likely with family and friends and that is a good thing.
For someone with a chronic or incurable disease, the holidays and special occasions can be exhausting and sometimes depressing. For myself, I miss the big family gatherings and the satisfaction of making every one's celebration perfect. I used to put a huge amount of effort into making every holiday or special occasion perfect for everyone. I loved doing it. I loved the smiles and laughter and I found great joy in getting down on the floor and playing with the kids.
Now, though, with limited energy, limited ability to be among others and general limitations of FTD, the celebrations can become painful. For most people diagnosed with FTD, one of the worst symptoms can be the loss of executive functioning. This makes it nearly impossible to focus on more than one thing at a time. When you add in the voices, music and activity going on around you, it can quickly lead to a meltdown which can ruin the day to those of us with FTD, as well as everyone else around us. The fear of doing this puts even more strain on me.
I did a pretty good job (patting myself on the back now) preparing for the holidays. I successfully cut back on things that we really didn't need for our celebrations and actually asked for help once in a while. I made it through Christmas, proud of myself for making it special for family and friends while holding myself together... mostly anyway. There were a couple meltdowns but not when many people were around, only those who understand what is happening.
Now, I am battling the "post-Christmas blues" and am melting down more often than usual. I am having more trouble speaking and am experiencing way too much anxiety. I miss having my daughter and my 'grandkitties' here for the week most of all. There are no more preparations to be made to use up any of the anxiety. I am left with a feeling of "Okay, what now?" Unfortunately, the only answer that pops up is to take down all the decorations and pack them away to hopefully use again.
Packing away all the decorations has always been kind of sad. Instead of the feeling of the holidays are coming, it is the holidays are gone, it's Winter, so now what? The house always looks so empty and sad once the decorations are gone. I will force myself to do it. I will do it over a period of a few days like I did for putting them up, but I can not think of a way to make it anything more than a chore.
Quite honestly, I didn't find anyway to avoid the question "Will this be my last Christmas?" I really don't think so because my case of FTD seems to be progressing slower than some, but none of us knows for sure. It can also start progressing more quickly whenever it wants.
On top of the post-holiday blues, the same thing is happening now because my birthday is less than two weeks away. I will only be turning 64 and can't stop myself from feeling just a little sorry for myself. I seems unfair that at this young of an age, I am dealing with this horrid disease instead of preparing to retire, travel and have fun. When I am already feeling down, it makes it easier to sit here and feel sorry for myself.
I will get through it, I always have before and I refuse to allow FTD to win this time around. My mother and I had a thing for when we were feeling sorry for ourself. It was usually after a romantic breakup or being hurt by a friend. We were only allowed one day to feel sorry for ourselves. We could wallow in self-pity, cry as much as we needed and curse at the world if need be. The next day, though, we had to be strong enough to put it behind us. It worked for us believe it or not. So, I am thinking that this is a tough one, so I will allow myself one week to feel blue. By next weekend, I will be strong enough to put it behind me. Party anyone? Oh, but remember, it must be a small and quiet party!
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