I have been whining a lot lately about the bad days, but I am currently enjoying a run of good days so I need to share the good and the bad.
I have had a lot of rest and it seems to have worked in keeping the wolf moving along much slower than normal. I tell you, a day or two of sleep will cure what ails you! At least in lupus, it can.
Things have been crazy around here for a couple of months now. We are attempting to take a house and make it into a home. This involves a major gut job and we are doing it in small increments. In the meantime, we have boxes stacked everywhere and you have to walk around them. In the hall, you have to turn sideways in places to get where you are going. Add packing up my mil and her things and putting them into storage, and getting our stuff out of storage a tiny bit at a time and you get the picture of life in my house right now.
After all the chaos mentioned above, you add this disease lupus, and it can be actually overwhelming for a normal person, let alone a sick one. So, when these good days show up unexpectedly, I tend to over do it. I have been guilty of painting a whole room out in one day, two coats worth. I have also been guilty of washing the laundry and the dishes (by hand) and finishing them in one day. If you throw in babysitting a grand or two and making a full supper, then you see how I operate, especially when feeling decent.
In the end, I think I am feeling better because the doctor gave me new doses of my meds. I think sometimes the doctors are afraid of upping dosages to be therapeutic for the patient. I know this new dosage is helping me be able to do what most people would call “normal” daily rituals many take for granted.
Do you have to stop and think before you head out to the grocery? What if your energy runs out halfway through the store? What if you have to go to bed immediatley upon returning from the store? What if you forget the things you went for and instead buy other things? What about arriving int he parking lot only to find your energy is gone already and you head back home? For most people, this is silly to think about. For lupies, we have these things on our minds all the time. We have to plan meticulously and prepare for every eventuality, including not following through on plans.
There have been milestones I have missed, due to lupus. My daughter and I were scheduled to go see Cher in concert (her farewell concert). I love Cher and so does my daughter. Unfortunately, the week of the concert, my doctor put me on chemotherapy meds which made me weak and sick. You guessed it, I was unable to go to the concert. My mom went with my daughter instead. No amount of wanting to go can help you when you cannot go. The adage of “the mind is willing but the body is weak” is certainly true with lupus.
Whenever I make plans, I always use the disclaimer “if I am able”. How sad it can be for those who really do not understand because at times, some people get angry at me like I am personally responsible for the lupus acting up. Yes, it happens a lot. That is why I wrote it here.
Ok, so now that I have rambled on and on and totally gotten off the subject, I will close this post. I hope it makes sense to you all who read this. It is just my thoughts and how they roam around at times. I hope you all have pain free days ahead and loving and supportive friends and family to help you get through the bad days.