I have been feeling downright crappy the past few days. No illness to put my finger on, just a normal FTD headache that I can't stop with my normal self-help of caffeine and reiki. Even sticking my head under really hot water isn't helping. I know this sounds backward. Most headaches respond better to putting cold on your head to dilate the blood vessels. My FTD headaches actually worsen with cold. I always did have to be different. I don't believe it is the headache that is making me feel crappy, it is the other way around. Feeling crappy has given me the headache.
It isn't the weather that is affecting me. It is mid-February and I live in central Pennsylvania. Not only is it not snowing, it is sunny and almost 70 degrees and days like this one are a true and unexpected gift. Yet, I am grumpy and feeling angry at everything and everyone and every little ache and pain seems magnified. I don't envy my husband at all. I can't even stand to be around me.
This brings me to the question: Which is worse, having FTD yourself or caring for someone who has it? My answer varies from day to day. Today, I would say my husband has the wrong end of the deal. Other days, it is me.
I have lived this disease from both sides, as a care partner and as the one with FTD. Trust me, they both just plain suck sometimes! The frustrations of being the caregiver can be extreme. You are watching someone you care about struggle to live a good life while dealing with the effects of the disease. Some days, I visualize myself as going through life with a 20 lb. ball attached to each ankle. This extra struggle makes everything difficult. The caregiver is there, willing to take some of the burden of the weight. The problem then becomes that they are carrying around their share of the extra burden while trying to deal with everything else in life.
Often times, the caregiver is still employed full time since loss of employment is the norm, rather that the exception, for the one with FTD. They also have to take on all the responsibilities like taking care of the finances, the pets, the kids, household repairs, car maintenance, shopping, cooking, laundry, house cleaning and on and on. These tasks used to be divided up and yet could still be overwhelming at times. Now though, it is all on the caregiver. All this on top of trying to ease the burden on the person for whom they are caring. When do you sleep? How can you maintain a healthy diet? Being the caregiver is not an easy life.
We are a little better off than many dealing with the issues of FTD. My husband retired early before we realized there was something wrong with me. Of course, it wasn't long until I was "retired" or "fired" depending on which way you look at it. He had already taken on some of the household chores, including laundry, and I was still able to cook and care for the house. Now that even those tasks are becoming quite challenging for me, it keeps getting more difficult.
It is a dirty trick how FTD seems to make many, if not all, of us very quick to anger and quick to become frustrated. I can still dress myself, but putting my jacket on and taking it off has become difficult. The zipper and sleeves of my jacket seems to be defective. The zipper just won't put itself together and pull itself up. I have to struggle to see the two sides of the zipper (not easy with the double vision FTD has given me) and figure out how they can possibly fit together. Then, the armholes always seem to move and hide so that my arms can't figure out how to get into them. My husband is always right there to help but, after struggling, I am so angry and frustrated that it is too late for me to accept it. Not being able to be self sufficient enough to do simple things is a horrible feeling. As a result, I go out with an unzipped jacket more often that I should.
Realistically, I do understand that I should ask for help ahead of time or explain to him that I need him to help me with tasks that are challenging me each time before I get myself so tied up in knots. To me, that is a horrible option and would be like admitting I am useless. Don't say it. I know it doesn't make me useless, but trying to stop those feelings is like trying to stop a freight train with my bare hands.
This is just one of the stupid things that happen throughout the day that leave me angry and frustrated. It is so difficult to explain to anyone how often things like this happen throughout each day. Once I have a day containing enough situations like this, I am done. I am exhausted from the anger and frustration and so sad that this is how it is forever going to be, that it will only get worse.
Even when I have good days, like last weekend when I successfully made Valentine's cookies, until I realize how worn out I am from struggling with even a successful task.
Anyway, this has been a long and round-about way of explaining why some days I feel so crappy when there is no reason that I can identify. During days like this, I have to just keep plugging away and stay away from people so I don't lash out at them. Now, everyone who knows me well enough is going to say i is okay and that they are willing to take the chance and would just shake off the abuse if I do blow up. If only it were that simple. Can you imagine how frustrated and angry with myself I am after I do lash out at people who love me? I can't take the risk.
I think it is a pile up of these kind of things that is making me feel crappy, not a pending illness. Fortunately, it will disappear as quickly as it came on. It just takes longer!
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