Coffee

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English: A photo of a cup of coffee. Esperanto...

English: A photo of a cup of coffee. Esperanto: Taso de kafo. Français : Photo d’une tasse de caffé Español: Taza de café (Photo credit: Wikipedia)

Coffee is a unique thing to each person. When I was younger, it would wind me up and send me out to face the world with a bundle of energy. It was my energy! As time has progressed along with my age, I have found that my reactions to coffee have changed as well.

Coffee now is not the energy maker it was in my youth. I have found it to be the opposite now. I can drink a pot of coffee and go to bed and sleep. I mean, sleep really well. It seems that as my body changed with age, I have developed to the point that stimulants are no longer stimulants to me, they act as opposites now. Crazy, huh?

Conversely, when I take a narcotic pain medication, it reacts like a stimulant to me. I become energetic once the pain subsides. I am not sure how or when it happened, or even why, but I accept it as just being my unique self with strange body reactions. To think it all started with that first cup of coffee…

My new ally in this lupus fight

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I have found a way to feel better, or at least a little better than normal these days. My normal for the past few months has been a flare with no end in sight. Painful and depressing. For the last few days though, I decided to try a new trick against the wolf. What is it?

Each and every day for the last few days I have made myself lay down for an hour or so and take a nap. Yup, a nap. Guess what happened? Well, I have always felt at my best right after waking, before the pain gets going full tilt. By taking a midday nap, it makes my body feel as it does in the mornings, and I get decently lower pain. Will this keep up? I do not know. For now though, I will take the naps and see if wolfie will lay off of me for a bit.

I wanted to share this because it might help someone else out there too. I figure, like most of us with lupus, that it is worth a shot to try it. Believe me, we try all kinds of things in an attempt to get this disease under control. This is an easy one to try though. Happy napping!

Whoa there partner…

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Have you ever heard the old saying “making hay while the sun shines”? Today was a day like that for me. When I woke up this morning, I was sure it was not going to be a good one. After taking hubs to the doctor, all I wanted was a nap. I took one and woke up feeling dubious about the day since I have been having a run of bad days lately. I was pleasantly surprised to discover that not only did I feel wonderful, but I also had an abundance of energy. Amazing to discover and so I put it to good use by deep cleaning the living room.

I am so excited that I got something big accomplished today. Now the flip side of this is that now I am laying in a recliner, in pain, and paying th eprice for a good day. Wolfie, you are such a brute. You let me have a decent day for once and then shut me down in pain later. Sometimes, I wish you would would decide which one you want so I can deal with it better. It is hard not knowing how your day is going to be or how it will end.

I am not alone in this. Many times I have told people that I have to pace myself, and then when I do feel good once, I waaay over do it because I have so many things on my “to-do list” and I use the energy to do them on the good days. Instead of pacing myself, I want to do it all while I can and then I pay.

When diagnosed and joining a supprt group, I was told to listen to my body and if I cannot do something do not overdo it by doing it. The thing is, it rebounds on you and you get worse if you push through it instead of listening to your body. You know, in theory that is good, but the actuality of the situation is that most of us lupies do this because we know all the things we have to do and the temptation to do what we can when we can is normal.

So, in the end, the good news is I have a clean living room. The bad news is that now I am in pain and resting because I over did it. I will wait and see what tomorrow brings, but I am open to another great day like today! Take that wolfie!!!

hibernation

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It has begun yet again. It is that time of the year when I begin the staying indoor life and very little of the outdoors life that I enjoy so much. When the weather changes, it is a wondrous thing. Seasons are lovely things. I love it when spring begins, the pushing forth of new shoots of all types of plants. The greening of trees and grass. The feelings of life beginning anew. I love spring. It is the beginning of warmer days and cool nights. People begin to emerge from their winter hibernation. Thus, the title of this blog.

Hibernation is defined as (from Merriam Webster dictionary online):

1: to pass the winter in a torpid or resting state
2: to be or become inactive or dormant
 
I have begun my winter hibernation, sooner than I wanted to. You see, after our walk for lupus, and my trip to Kentucky. I ran completely and totally out of energy. Energy to function, to get out of bed, to eat, and to do anything more than sleep. Yes, I am quite good at sleeping lately. I could be an olympic sleeper these last few days.
 
In the interest of explaining this to those who are “normal”, I will try endeavor to equate this with something you would understand.  Have you ever had a bout with the flu where you feel awful and have no energy? You have aches and pains and all you want to do is burrow under the covers and sleep? That is similar to what I have been feeling. Not quite as bad, but similar.
 
I was wondering if any other of my lupus friends are feeling the same way. This time of year seems to do that for me. The cooler weather brings on the achiness in my joints. The good old arms and legs begin to feel like rubber and useless. At times, it feel like there is an elephant sitting on my limbs and whenever I move I have to move it as well. I have also heard it explained as walking in knee deep sand underwater. Both are apt descriptions.
 
So, my hibernation seems to have begun much earlier than I anticipated. Maybe this will pass and I will be out and about feeling improved sooner. I can hope and pray for that to happen. I would love to be surprised on this point! Hope to hear how you all are coping with this season change.  
 
 

Good days

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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.