January 8, 2005

Evening activities have changed ALOT

Most of us come home from work eat dinner relax and get a few chores done around the house before it is off to bed to do it all again the next day. In that respect I am much like everyone else-I just have to make minor adjustments to make it work. For example-I have become quite adept at using the crock pot, I can put something in it the night before and all I have to do is take it out of the fridge and put in on low in the morning and dinner is ready when I get home. Some mornings if it is a heavy dinner in the crock pot, I have to ask either my son, daughter or husband to put it on for me. Who I ask depends on who is not running behind at that point.

I also now have the children bring their laundry hampers to me and they have to separate their laundry when they get it to the laundry room. It is very hard for me to bend over and it is impossible for me to do it without alot of pain so this is an adjustment that we have all had to make.

My husband says I want to live in a hospital because he has never seen a cleaner more sterile enviroment than our home besides a hospital-LOL. That has not changed it just takes me alot more time now. If it is too much though I am learning how to let it go and do it the following day when I may be having a better day. Alot of "lupies" make the same mistake I do which is if I am having a really good day like a 4-5 on the pain scale, then I do EVERYTHING, because I do not know when the good day will happen again so if I get as much done as possible on those days then on the bad days there will not be so much to do. The problem with this type of thinking is overdoing it one day can cause you to be bedridden for two so before you over do it to that point you have to decide if what you are going to do is worth it to you. I will do that to go to something one of my children have going on, I will not do that (anymore) to scrub the kitchen floor on my hands and knees-I have to learn to be happy with the job the mop does. Not an easy task for me but one I have had to do. When it comes to your health you can not be too careful and realistically, if I want to be around to see grandchildren and bake cookies with them, then I have to pay attention now. Most people my age are not as aware of their joints and muscles as I have had to become.

It is funny when one finds out they have a chronic illness alot of thoughts run through their mind. Typical ones about money and children and how to go on having something resembling a normal life but depending on what age you are when you find out you have a chronic illness you also have other thoughts.

I have searched the web wide and posted the question in a couple of message boards that I belong to and I still have not gotten a good answer, I have gotten typical type of replies but not the meat and potatoes answers I am looking for so I have also decided to post it here because depending on your age-if you are reading this odds are lupus is affecting your life rahter it is yourself, a family member or a spouse.

If you are uncomfortable with sexual talk then you may want to quit reading this entry now.
Last warning..............................................
Ok-alot of the medicine that they put you on to try and help control your sypmtoms also cause a loss of libido. It is hard to feel turned on even without the side effects of the meds when your whole body hurts and you are either sweaty or clammy or cold depending on where your tempature is. I am still young enough to want to have a normal sex life with my husband. The problem with this is at least triple fold though. One-the meds I am on cause a loss of desire. It is not that I do not want to have sex, it is that sex does not occur to me to have sex anymore, it is the furthest thing from my mind most days. Two-My muscles and joints hurt and ache even on the pain meds. Now I am trying hard to not get too graphic however-there is no position that does not put pressure on your joints or muscles, there is no position that you do not have to use these in one way or another. Third-I have been running a tempature since April with maybe a day a week for break from it and that is it-who wants to have sex when you are already HOT, SWEATY and CLAMMY? Now if I was not married this probaly would not be as big of an issue as it is however, I am married and my husband is only 30. He obviously wants to have a sex life that includes equal participation. What I really need to do is talk to my doctor about it and hope she can give me some advice in this area. I do not know if she can or not. What has stopped me from doing this up to this point is the knowledge that this can go into remission at any point and if it does why bring up such an uncomfortable topic with my doctor if it is only going to be an issue once in awhile-like during a flare? OF course this last flare that I am still in has been going on since November and is showing no signs of letting up. When I took my tempature tonite it was 100.4 now that does not sound too bad to most people but most with lupus and I am one of them-do not have a normal body temp anyway. Normal body temp for me is 97.3 so you are talking over a three degree higher than usual temp as opposed to less than two degrees. Generally your tempature is one good way to tell if you are still flaring (besides the pain and fatigue)or if you are getting ready to flare if you have been in remission. An increase in fatigue for a lupie is kind of like an oxymoron simply because we are more prone to being excessively tired than average people anyway. One of the first signs that I had that something way out of the normal was going on with me was that I have always bounced out of bed in the morning and all of a sudden found myself turning off the alarm and oversleeping. Before I was diagnosed, I had overslept so often that my son had to go to lunch detention for being late to school so many times!! We finally had the children put alram clocks in their rooms to set so that they would get up and could wake me up as well. So far no one has been late since we did that.

I am going to wrap up tonight with this-life with lupus is ever-changing and is a journey as much into your soul as it is into your health. IF you are going to have to give up your career you will have to know that you have value as a human beyond your contribution as a breadwinner, for many that is a hard adjustment as well.

Posted by Lisa on January 8, 2005 4:30 PM