another day…


I did have a few bright spots this week though. I got to babysit several of my grands and it gives me great blessings to spend time with them. They can make me smile on the worst of days. Their youthful innocence is a sight to behold, and their empathy is outstanding. They accept you for who you are and what you can do that day. They do not care if I cannot roughhouse with them. They only care that we can snuggle and hug. I wish more grown ups were like that.

It is just another day here in my life. I have had a difficult week. This flare is really causing me pain in my joints and in my head. I have gotten out and tried to do some things this week but the heat is also my enemy. Yeah, I know, I gripe all the time. For you normal people, it would seem that way. For those of us with these diseases though, griping is our way of letting the anger go, the anger that we have these diseases, they are incurable, and we have to live with them. The anger that some people misunderstand our pain for laziness, and think we want to get the attention. That is not true at all! We are genuinely ill and with no cure, we are facing the rest of our lives with uncertainty. The wars raging on the inside of our bodies are not visible on the outside but they are still there, causing pain and discomfort. So, do not judge us, please try to understand us. We cannot “buck up” and overcome our fatigue, pain and disease. If we do that, we are setting ourselves up for a backlash from our bodies. To a degree we can buck up, but the results are often days of pain following. We have had to learn to listen to our bodies cues, and if it says rest, we rest. If we are able to participate, we do that as well. We make plans knowing that we may or may not be able to follow through with them. So please, try to understand and do not pressure us to do things or think we are less because we cannot do certain things on certain days. We feel bad enough without judgment from others.

In the end, this week we got a lot accomplished at the house. This is a job of immense size and we are hoping to get it a little chip at a time so it does not overwhelm and overtake us. I cannot wait to get it done so I can see the finished product. I have high hopes that it will be good when it is done and finally we can relax.

I hope you all have had a great week and stayed cool from this heat! It is not easy to even breathe in this heat. Take it easy and hope you are all well.