Tuesday, December 23, 2008

Happy Holidays

I can't believe Christmas is 2 days away. Luckily I am feeling much better today than I have in a long time.
It has been a terrible last couple of weeks with excruciating pain and fatigue. I went to the doctor and he thought that I might have shingles but I never did develop a rash so I guess it is what it is-part of this mysterious illness that feeds off of me.
I just wanted to say how thankful I am for my wonderful parents who have been there for me always. They try to help me as much as they can. Although they are older, I feel terrible because they are taking care of me instead of me taking care of them. Fortunately my parents are very active and have quite a social life too :) I know that when the time comes and they need me to take care of them, no matter how I feel physically, I will be there for them.
I am also thankful for my wonderful friends, especially Brenda, Lisa, Beth & Robin (The Fab 5 we call ourselves) for they are the greatest in the world. Lisa came to visit last night and I was feeling a little down but she really cheered me up and I think it is because of her that I feel better today. It's like my whole attitude changed and it made me realize that friendship is the greatest gift of all and my friends always have enough friendship to offer me and I always have enough friendship to offer them.
Since I am feeling better, I am going to attempt to cook a traditional Cuban Christmas Eve dinner tomorrow evening for John and my parents. On Christmas day I believe we are going to go over to Jennifer's for Payton's 3rd Christmas.
If I don't return before then I hope that everyone has a wonderful Christmas.

Saturday, December 20, 2008

Managing Fibromyalgia - Improving Relationships

Since I have been feeling horrible lately I am just going to copy an article that I just read that I found interesting. I could have written this article.

Managing Fibromyalgia - Improving Relationships
An Article by: Bruce Campbell PhD

Chronic illness changes relationships, both for the person who is ill and for others as well, creating new strains and frustrations. Sources of frustration for people with CFIDS and fibromyalgia include not feeling understood or accepted, isolation, feeling pressure to do more than is healthy, the unpredictability of symptoms, rejection and abandonment. This article describes seven coping strategies used by people in our self-help course to improve their relationships.
1) Re-Assessing Relationships
People with CFIDS and fibromyalgia often find themselves re-assessing their relationships, making deliberate decisions about who to include in their lives. This re-assessment or "relationship triage" is motivated by two aspects of chronic illness. First, illness imposes limits, which in turn force us to be selective in what we do and who we do it with. Also, illness often makes us feel more vulnerable to those who are demanding or negative. Relationships that are both unrewarding and unnecessary may be eliminated, those that are unrewarding but necessary may be simplified.
I have made my circle of friends much smaller. I have excluded people who I feel I have been having one-sided friendships with. It was difficult to let go, as I once valued their friendships a great deal, but I have decided I need to put myself first, which is a new concept to me.
I try to limit contact with hyperactive people, negative people, skeptical people, and demanding people.
I am learning to stay away from those people who add stress to my life and to spend more time with those who keep me laughing and who understand me.
Some relationships are just too costly for me, and I need to let them go. If the person is causing me a lot of stress, making no attempt to understand my illness or just taking more from the relationship than giving, I can't continue to put my previous energy into it. When the person is family, I've learned to back away as much as I can, but it may not be an option to completely cut them off.
2) Seeking Support
Being ill is difficult. Feeling understood and supportive is a balm to the soul. Students in our groups report seeking out contact with fellow patients and also valuing the support and friendship offered by family and other non-patients.
Fellow Patients
Relations with other patients are immensely helpful, because they give me a sense that I have people in my life who truly understand. This has both lessened the frustrations of relationships and reduced the frustration of being ill.
I have a dear friend who has a different chronic condition but who is someone I can share my day and feelings with. It works wonders for both of us. Getting support from people who are in the same place as you helps.
The most helpful relations with patients have been with people who have significantly recovered. They seem to be the most supportive and understanding. Others are less into self-help strategies or genuine support, more into what is the latest miracle cure.
Support from Others
I have found talking with selective friends to be very therapeutic. It makes life with chronic illness a little easier to take.
At first I knew no other people with CFS. Then I met a lot, but isolated myself from healthy people. Now I've been working on nurturing relationships with both sets. I need people I can talk to about my illness, but I also need to get outside the world of CFS as well.
I am really lucky because I have two really good sources of caring friends. First is my church, especially the Bible study group to which I belong. Second is through the business I started a year ago.
3) Practicing Assertiveness
Illness imposes limits. Assertiveness means setting safe limits for oneself, then communicating them to others.
Setting boundaries and keeping them set are big challenges for me. For years I have had ‘welcome' tattooed on my forehead, as if I were a doormat.
I often use the illness as an excuse with those who would obligate me by asking me to be on boards, give showers, serve in the community, etc. At first it was very hard to say no, because I love a challenge or a party, am capable, and like to be active and involved. I've found that some people need to be reminded several times before they stop asking, but that's OK.
When invited by friends and family members to come over or do this or that, I am honest with myself and decline such invitations if I know I am not up to the certain activity. I just give a simple explanation that ‘it might be too much for me today' or ‘I am not up to doing that at this time' and let it go at that. I have found that telling the truth is so much better on both sides than accepting the invitation out of guilt and suffering with it.
4) Educating Others Selectively
Patients are sometimes successful in educating others about their illness, but most put limits on their efforts.
When I was first ill, I tried to educate everyone about CFIDS. Over time I came to see that some relationships were more central to my life than others. I also concluded that some people might never understand. I still make efforts to educate, but I'm more selective about who I approach and I've accepted that some may never understand.
I try to help others understand my illness, but I don't force it down their throats. I try to talk openly about my illness without always focusing on it. If being open spurs further questions, then I share what I can. But I no longer waste my energy trying to educate everyone.
I'm OK with the fact that some people are very sympathetic, some people try to understand but never really get it, and that others cannot or will not understand or sympathize at all.
5) Doing Your Part
Chronic illness makes life more difficult for others as well. Family members, for example, may experience loss and feel isolated and helpless. Patients report another strategy for improving relationships is to focus on what they can do to make relationships work.
I try to be the best friend, spouse, daughter and sister I can be. I feel more secure and on equal ground when I feel I'm keeping up my side of a relationship. I can't do this with everyone, so I focus on the most healthy, valuable relationships.
I make time for my marriage. I've found that even if I'm too tired for us to do anything, if I just talk with my husband or sit next to him instead of in a separate chair, and pay attention to what he wants to say, then our relationship is much smoother and happier. He in turn is much more thoughtful of my circumstances and my needs.
I have found that identifying my part in mis-communication or a problem is very helpful.
6) Accepting Help
Patients report relations are improved when they ask for help in specific ways or allow others to set boundaries for them. Good communication can reduce fears of abandonment.
People are often thrilled when I ask for help in clear, practical ways. But I feel challenged to say what I really need without laying heavy expectations on people. My husband and children are always asking me ‘Are you sure you are up for it?' when I agree to go places. They are my protectors and it feels good. When my husband senses that I am isolating myself, he suggests doing things with me that are unstressful like ordering pizza and playing card games with him or all of us going out for a movie.
One of my biggest fears was that I would become such a burden that my husband would abandon me. At one point, he almost did. But we took it as a challenge and now communicate much more openly and honestly and have re-committed to each other.
7) Embracing Solitude
Illness often forces patients to spend much more time alone than before. Some patients see illness as providing an opportunity to develop new solitary interests.
I have really found that I enjoy having solitude. I never had time to do the things I loved the most. I was always in the fast lane, and by the time I got to do something I was far too stressed to enjoy it.
I actually enjoy spending a lot of time alone. After many years of activity and socializing, it is great to have time to pursue my intellectual interests. I like the luxury of not having to hurry. I read a lot, do simple household chores, watch TV, and work on my jewelry hobby. It is great to have the pressure to produce lifted from my shoulders.

Thursday, December 11, 2008


Here I am again feeling like crap and I have felt this way for the last few days. I can never figure out why because things happen in conjunction. For example, I lowered my tramadol thinking it wasn't doing anything then I start feeling bad again, but the weather is also rainy and messy and I feel like I have a bad flu. if it weren't for the weather I could say that maybe my tramadol was actually working for me but since the weather affects me, I can't tell which is the cause in this case. It is so frustrating trying to deduce and factor to figure out what works for me. I haven't been using the oil much but when I used it the other day I am pretty sure it helped. My problem is lack of motivation and forgetfulness. I just don't think about using it every day. You would think that with my pain and all that I would do anything but my fatigue makes me lazy and I just lay there putting it off until later. I make it here to the computer on my bathroom rounds. every time I get up to go, I drop in and try to catch up on some e-mail and go back to the sofa. I am so behind on all of my e-mails, I drop in on facebook and care2 as well but can't stay for long. I feel really out of touch. I guess I am.

Thursday, December 4, 2008

Rambling About Anxiety

Well since Tuesday was such a great day I didn't know what Wednesday would bring. It was an ok day-Not as good as Tuesday but totally bearable. I just tried to catch up on things that I haven't been able to do. I did have some swelling in my feet and ankles again but it wasn't that major. I have been feeling a little down and I don't know why. I have nothing to feel down about. I started feeling sorry for myself for no reason. I think that just seeing how hard everything is on everyone now and with the holidays, you can't help but worry about the future.
I might go out with my mom later on but I still don't know. That is the problem with me-I never really can know until the last minute. Some of it is my fibro some is my anxiety. I suffer from anxiety/panic disorder and major depression which I have been treating since I was 19. I have been taking meds for those ever since. I also became an agoraphobic when I first started having panic attacks, for no reason. I could not leave the house, not even get close to the door. Looking back, I can't believe it although I still have a little agoraphobic in me. I feel comfortable and safe inside my own home. I still have panic attacks all of the time but you would never notice it. I have had many attacks in the middle of a conversation or in meetings, etc. but I know what it is and that nothing is going to happen and I just let it pass, no one even notices, unless they can see the thumping palpitations of my heart. I am thankful to a wonderful behavioral therapist named Cheryl for helping me through the agoraphobia and controlling my anxiety. She committed so much of her time to de-sensitizing me to every situation. Every day we would go one step forward. It took several days to desensitize myself into going inside the mall. The first day we drove to the mall (Southpark) and parked in the parking lot. The next day we went into Hecht's (now Macy's), the next day we walked through Hecht's to the entry to the mall, the next day we walked out from Hecht's into the mall, etc., my goal was to make it to the food court in the middle of the mall. We made it and she never pushed me. I would only go as far as I could. Once I had a wedding and a couple of days beforehand she took me to the restaurant where the rehearsal dinner was going to be held and they showed us where we would be sitting and where the restrooms and all exits were. Cheryl did this with a lot of new (post-agoraphobia) situations, it is like I had to re-learn. Churches and movie theaters are the worst for me. I still have problems with those. I can never thank Cheryl enough for being there for me always. She totally changed my life. As for my depression, I need meds for that due to a chemical imbalance. I tried weening off of my meds one time and it was a total disaster. I know I need my meds and I will have to take them for the rest of my life. If it weren't for my meds, I probably wouldn't be here today. Although I want to treat all of my other ailments with alternative treatments, I know I will always need my prescribed meds for my depression. People with FMS also suffer from anxiety and depression or as in my case, vice versa.
I did not mean to go all into that but I guess it helps to always express yourself and your feelings, under the right conditions, of course:)

Wednesday, December 3, 2008

It's Been a While

I know it has been a while since my last post but I have had a terrible time with my FM. I have only started gradually feeling better within the last couple of days, that is when I can say that I am a survivor because I make it through the tough times and then everything is ok. I don't know how long this good spell will last but with FM you'll take what you can get.
Thanksgiving is my favorite holiday and I love to do all of the cooking. This year I had to ask for help from John. I was physically not able to do it all. It is hard to ask for help when it is something you want to do but sometimes we have no choice. I have to say that on that day I felt for the first time in my life "disabled" or "handicapped" which probably makes no sense to anyone but me. The day was nice with the family and the food and I enjoyed it as much as I could.
A couple of weeks ago when I went to the Christmas show, there was a lady selling some oils for relief of all kinds of ailments. She used to have FM and had an oil that she makes herself and says she no longer needs medications. I am not a sucker but when you feel what I feel you will try anything. The bottle was an expensive $18-stupid right? Anyway I started using it the other night. You are supposed to put it where your pain is and then on the soles of your feet. I am not saying this oil did anything, but I have been feeling better ever since and I have been using it daily. It could just be a coincidence, but I'll take it. Yesterday I actually went out in the yard for a while and did a few things and put a couple of outdoor decorations out. Little by little-we'll see.
Last week I also reduced my pain medication by half because I didn't feel like it was doing anything and I feel no difference since then so apparently it wasn't doing anything. I didn't use the oil yesterday- I don't think it is a miracle cure- I know my mind can influence a lot of things- I am just glad that today I can say that I am a Survivor!