If nothing else, the last few months since I last posted anything, I have been reminded of the importance of having a good support system. Having people you can depend on to help you when you need it the most makes everything so much easier.
No, nothing is wrong with Robert. His symptoms have not gotten worse. Instead, I have had a rough time with my own health issues and they have taken a toll on both of us and impacted our day to day life.
About five years ago, I was diagnosed with a very rare but very severe form of arthritis. An auto-immune type of arthritis that makes my body attack itself. It causes all kinds of fun stuff like bone fusion, inflammation of bones, swelling in joints and stiffness all over my body. For me, the worst areas happen to be my lower back and my hips. Some days just putting one foot in front of the other is a trial. Not to mention being more suseptible to picking up all the nasty germs that get passed around
It took a long time for the doctors to even figure out what the problem was. When I first started complaining of arthritic like symptoms around the age of 25, the doctors told me there as no way that could have arthritis. I was too young for something like that. It took almost 10 years before I was able to convince a doctor to do the testing and in fact diagnose me with Ankylosing Spondylitis. So, the damage to my body has been fairly signifigant because I went so many years without treatment.
Plus, to add a little more fun to the mix, my body does not tolerate most prescription pain medications. They tend to make me very sick. So, I can take Tylonel or Alleve but not much more.
I am in chronic pain. I have learned to live with it. However, lately it is sometimes more than I can bear. I have missed more time from work in the last four months than I have since my intial diagnosis. My weekends are usually spent doing a very limited number of things. Since grocery shopping on Saturday and going to church on Sundays tend to be a top priority, many weekends, that would be the one and only thing I did each day. The effort it required to accomplish that one task each day was so draining after a week of work that I would need the rest of the weekend to recuperate so I could make it through a week of work. All the while trying not to let on to those around me how bad things really are.
Luckily, I have begun doing some physical therapy and chiropractic care and in the last couple of weeks, I have started feeling more and more like my old self again. I still find the pain to be unbearable some days, but I was actually able to do some stuff around the house besides laundry this weekend and not feel totally drained the next day.
I say all of this not to get sympathy from anybody but to provide a bit of an understanding of my overall point. My point is to highlight the fact that we all need to build support systems for when times are tough. Right now, I have a great support system in the form of my wonderful husband. He has been the one doing most of the house cleaning and letting me relax and rest as much as needed. I am so grateful to him for being there for me. However, I am cognizant of the fact that one day, he won't be able to do that.
One day, he will be in the late stages of HD and unable to clean house for me. One day, I will be his primary caregiver and will have to be able to take care of him in all capacities. That is Huntington's Disease and the reality of things to come. If the last few months have taught me anything, it is that I will not be able to do things by myself.
The nature of the disease that I live with is that it, too, will continue to progress and worsen as time goes on. I get what the doctor calls flare ups. Some days, it just seems worse than normal. The flare ups are bad. Especially when they seem to last for months instead of just a day or two. So, that means that I will have to have assistance in caring for my husband at some point in time.
Knowing all of this puts emphasis on the fact that I need to take care of myself if I am going to be able to take care of him. I have to be healthy and able to do things if I am going to be able to do for him.
The same can be said for any caregiver. You have to take care of yourself and make sure you are healthy. You have to take time to make sure you, too, are getting the care that you need, the rest your body requires and the mental breaks that you need. This is a necessity if you are going to provide the best possible care for your loved one. Part of doing this involves making sure you have a support system in place to assist you when you have a bad day.
You will not be able to do it all by yourself. Start making plans today with those friends and family you know you can count on to help you when you need an extra hand. Waiting until you have reached the point of needing help may be too late.
