Tuesday, April 5, 2011

Lyme and Life- You can't have both

Now don't get me wrong, I do realize life goes on when you are sick and a lot of it has to do with your perspective on things. It's just that there are times when it doesn't seem like you can do both, especially with Lyme. I think I have just been a little extra stressed lately and things seem a little overwhelming at the moment. Having Lyme Disease is like having a full time job. Being a mother and wife in and of itself can be a full time job. Still many of us have to work full time as well. The thought of trying to do all of it has me a little worried. Before I was diagnosed, I did it all but not well. Neither work nor my family got my best, I was stressed out and felt bad most of the time. Prior to being diagnosed though, I was really only being a full time working mom and a wife. Once you are diagnosed and treatment begins, things change radically. When you realize what you have to do to get better, treatment can quickly take up most or all of your time.

A set of highly referenced guidelines for Lyme quickly outlines a few things that are a must for successful treatment...sleep is number one. You can't get over tired. (Ya right) Not just sleep at night, but napping at least an hour everyday and before you get tired is essential. For most Lymies, that is difficult as insomnia is one of the symptoms we have probably been dealing with already. So now, in a perfect situation, you would be getting 10 to 12 hours of sleep a day and sometimes more. There are plenty of days when you don't get out of bed or off the couch. Eating right and taking all of your meds is extremely important. If I took all of my meds and supplements at the right time everyday on my IV days I would be taking stuff about 11 different times through out the day. Exercise is important but is very hard to do. It can be almost impossible for some people yet it is needed by almost everyone. Some people need fairly aggressive physical therapy to help with what was lost. Now you have to squeeze in detox. If you are not helping yourself detox all of this crap out of your system then you will feel so bad so much of the time you really won't do anything. FAR Saunas, rebounding, lymphatic drainage massage, colonics, enemas, Epsom salt baths, dry brushing...that is just some of it. Although this may seem like a want instead of a need to a lot of people many of us will tell you different. Taking time to connect (Facebook, on-line, yahoo groups) to other lymies for support is super important. You don't want to constantly complain to friends and family and fellow Lymies know the hell you are going through. You need to keep on the latest research, treatments, tests, and laws. You need to be educated and you need time to escape. There are times when all of this can take up a day. Now add in you roles as a parent and spouse. Something is going to suffer when you do both. When I try to be the mom I want and my kids need my Lyme suffers. I look at the pill box and realize I missed a dose of something. My IV's are spread apart farther than is ideal. I forgot to eat. I didn't get a nap. When I try to be the best Lyme patient possible my kids get to much fast food, I would be missing my daughters games, we miss church, the t.v. becomes the babysitter.

Now with my possible return to work getting close, I would be lying if I said I wasn't worried. June 1st is just around the corner. Even if I continue to have better days, and start feeling consistently better, for at least the next few months, nothing changes in my treatment. I will be still doing my IV's and continuing with all of current meds. In fact, I have just added a few more supplements, that should help me feel better but I will be up to 36 to 42 pills a day (depending on how I feel). Plus at least 5 liquid herbal supplements that I take twice day. The need for sleep, detox, and emotional support wont change during this time. In fact sleep may become more important as I am doing more. The requirements of my family won't change either. There will still be games and practices, vital time with mom and dad, church, family meals...Something will suffer. This disease just doesn't allow you to be sick and have a life. I am scared about the future. There is no way around it. I am praying God really gives my family some direction and we figure out what we need to do.

My story is in no way unique. Any Lymie will tell you their own story that sounds so similar. I don't doubt that there may be other diseases out there that can do the same thing to ones life but I  can only speak about the one I have and the havoc it is caused in my life. It is a vicious cycle of trying to be a compliant, diligent patient so you can get better as soon as possible yet trying to hold your family together and not let life pass you by. I don't wish this disease or this situation on anyone.

I'm not giving up or losing hope. I am just having a little set back as I try to work through this all. Almost a year in and things just seem to be getting crazier. There is no end in sight and for now that is okay. I guess it is like running a marathon...you don't see the finish line when you start out. It's like my doctor always says to me, "Your treatment is not a race." I guess he's right. To some degree, treatment will become a way of life. I will not be doing as much as I am now for the rest of my life but you don't know if you ever get rid of Lyme. If my kids have it, the cycle will only start over for our family. I look forward to the day when this disease is not the number one thing on my mind. To go a day without it being at the forefront of everything I do and every decision I make will truly be a blessing.

Now to take some pills, detox, take a nap...all in 2 1/2 hours before I have to become a mom again. :)

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