Monday, May 31, 2010

Does anyone really listen anymore?

I'm tired. This weekend sent me into flare mode. It was likely due to the drop in temperature by 30 degrees F (my American readers get confused when I use Celsius). We had rain and wet snow which never makes life easy for a Fibro girl. I had to attend an event on Sunday that was impossible to miss. My Mom was throwing a bridal shower for my cousin and the Princess is a junior bridesmaid. The King did not want me to go because he knew that I'd be unable to just sit and would be pitching in to help where I could. I tried to do the minimal but when you don't look sick and there are women older than you stepping up while young women sit round. I wasn't raised that way and I just can't do it no matter how much I pay for it later. The Princess was doing all she could to make sure I didn't have to do much but when you are in flare even the most mundane tasks can be too much.

A family member called today and I made the mistake, again, of truthfully answering the "How are you?" question. I don't know why I bother. She doesn't hear me when I try to explain fibromyalgia, she thinks it equates to depression and for me it doesn't. I've been depressed before. I've done the med circuit for post partum depression that morphed into plain old depression. It was the worst time of my life. Yes... even worse than dealing with the hell that is fibro. I can't imagine dealing with fibro and depression as so many of my fellow sufferers do. I am SO grateful that I have not had to deal with them together. I am tired of explaining that there is no magic pill. I'm tired of explaining that I chose not to take pain meds because I have addictive tendencies and very low tolerance for meds. I chose not to live my life in a haze... there are days I wish I could but I know my body and I chose not to put myself or my family through that kind of living. I told her that I over did it when I was already feeling poorly and now that I will have to pay the price for a few days while my body tries to recuperate. She made the comment "that is no way to live". I replied explaining that sometimes you have to do things you shouldn't do because you don't want to let people down. That if it would have been any other occasion on Sunday that I would have excused myself but bridal showers are once in a lifetime events. It is during times like this that I wish my skin would turn green or a neon sign would appear over my head so people would see that the one who doesn't look sick is sick and shouldn't push herself and has sacrificed a lot to be there for your special day and will sacrifice further as she tries to recover from doing to much to make it a special day.

I don't want your pity. I don't want your "cures". I don't want your diagnosis or analysis. I want your understanding. I want you to hear me without telling me stupid things like that is no way to live.... it is a way to live... it is the way I live and many like me live. It is the way our families live. It is not just me who suffers when I am sick... it is my whole family who pays the price.

Friday, May 28, 2010

Hopeful Treatment

I've had some success with infra-red saunas as a source of treatment. Unfortunately, to get one that is well made, has the right kind of heat and will not off gas toxins from the construction materials we are looking at about $3500.00. Over time it certainly would pay for itself but to gather together that kind of money at the outset is not an easy feat for a family with 4 growing children. I have access to one but I only have that access if the King is with me. This is a busy time of year for him that requires much travel so my visits have been very minimal. The massage therapist in the office I work tried an infra-red body wrap at a local spa. The body wrap is advertised for weight loss but she thought it may be helpful to me as I had some good results with the sauna. I discovered that I could claim it as a "wellness" treatment through my husband's insurance so I forked out $75 to give it a try. I've been feeling so poorly since 2010 began I figured I had nothing to lose. The woman at the spa was very knowledgeable and professional. Rather than wrapping my arms as she would for someone interested in weight loss she wrapped those bits up my back and around my neck, I was also wrapped around the middle and my legs. I relaxed for an hour doing nothing but resting, hydrating and sweating. I was amazed at how refreshed I felt immediately after. I felt amazing several hours later albeit tired. She said that I would likely feel tired for a few days but how great my body felt definitely made up for the tired. The effects of the wrap lasted nearly 3 weeks. I was even surprised by my visit from AF as I usually feel like total crap the week before and regularly experience flare symptoms, if not full blown flare. It wasn't until our weather turned from spring to spring snowstorm that I felt poorly again. I will definitely try the treatment again. If I purchase 10 sessions at once than I get a $25/treatment reduction.