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One thing we can count on with our conditions is that we can count on not being counted on. We never know from day to day how we're going to feel, and that means planning is difficult or impossible. Making appointments and knowing we will keep them is not doable for us. I have told my Docs, the ones with the policy that says, ³we charge a $25.00 fee if appointments are not cancelled 24 hours in advance´ that I will not adhere to that policy and if they don¶t like it than they are not a good doc. I calmly explain that I will do my best to give as much notice as possible, and I will do my best to be there, but if I have to reschedule, than note it in my chart that I am having a very bad fibro day and have the receptionist, sympathetically reschedule my appt. A recent comment put on a discussion site said it perfectly. Lisa B wrote: "I live in a world of Maybes. Maybe I can go to your party. Maybe I can do this photo-shoot. Maybe I will get well one day. Maybe I can clean my house today." -Lisa B The "maybes" make it hard for us to maintain a job, a social life, relationships, you name it. Even scheduling something simple like a doctors appointment can be stressful, ³will I be able to make it to the next one?´, ³Will I be able to present myself well and look my best?´, ³Will I be able to have an intelligent conversation and remember what was said?´ It is the same for doctor's appointments, parties, family functions, lunch with a friend, etc. I have all the sympathy in the world for those of you who have to go on job interviews or make presentations to clients. Just even thinking about it makes me stress for you, because, well, I am educated, and when I cannot come up with a simple word such as ³beneficial´ or a phrase such as ³it is in the best interest of´, it makes me crazy because I look, feel or sound stupid. I don¶t want that for any of you either. I have lost many friends, and much of my immediate family thinks I make it all up, and I had a marriage end because of it. How depressing this can be. Those poor, ignorant people that prefer to judge instead of understand. The people we thought would be the ³best´ about it all.Where have they gone? But it¶s the docs that should have our back. When they don¶t, well, it makes life even more stressful and worsens our condition. Why don¶t they understand or behave appropriately? It¶s not like they haven¶t over booked anyway, and having one less patient probably allows them to breathe a little anyway««but they don¶t see it that way, we have just ruined their schedule«.yeah, right.
First, what I've had to do is accept that sometimes I will need to cancel plans. I was not happy in the beginning, I use to ³do it all´, PTA mom, active community member, school site council board member, Education Foundation Board member, full time employee, full time friend, full time mom, full time wife, etc, etc. The alternative was not acceptable to me. The alternative was canceling or rescheduling, this was not ³ME´ at all. I was giving up things that were ³ME´, things that were my life. Sometimes I feel like a flake, and other people might think that I am, but the times that I can make it are worth the risk. I may not feel good the next day, but I have learned to rest the next day after doing something big.I try to be as open about my health problems as possible, but only when I have to be because I get tired of explaining it to certain people. But, if people know we have limitations, they won't expect as much from us and they'll understand when we say we just can't do something. And quite frankly, if they're not willing to cut that slack, they're not worth our time anyway. Third, I definitely agree with a recent commenter who wrote: "I learn to gravitate toward those that have health problems like myself." -Kristi My new and improved relationship, my hubby, is more understanding than I can even to this day comprehend. Through him I have met some amazing people with similar conditions. We do health fairs and have made good friends, we go motorcycle riding and have made good friends and you would not believe how many of them or their spouses have a similar condition, or have a friend that does. We both understand that plans are always contingent on how I am feeling, and we spend a lot of time making sure that I will be ok or comfortable. It really does help to have at least one other person in your life who has physical limitations. If you don't have someone like that, try local support groupsor even an online group can help you find people that could just so happen be in your own backyard. Even if you do not find someone local, connecting with people online as we do here gives the opportunity to form strong relationships without having to get dressed or leave the house. Fourth, back to the medical community, stand up for yourself. They cannot, well hospitals, cannot drop you, and if you explain your condition to them, they should understand. If they do not, nicely remind them that they might be in the wrong profession if they cannot understand. Ask to speak to their supervisor or you can even have your own doctor call them. Go above who they are, if they cannot handle the reasons for you rescheduling, than talk to someone who can.
Now, Accepting our Illness«
Some other issues to our life of ³Maybes´ include us feeling guilty for our own illness. How ridiculous is that?!?.....But we do, don¶t we? Yes, you know I am right«« I hate asking for help. I've always thought of myself as a strong, independent person, and asking for help with things I think I "should" be able to handle is like admitting weakness. But you know what? I need to get over it. Well, for the most part I have«.just ask my kids. I use to be so, hmmm trying to think of a better word, but anal is all I can come up with«.I was very anal about how I kept my house«.HA!!!! You should see it now. Not so anal anymore. The reality is wehave fibromyalgia. We are NOT sick because we are weak; we just have to accept that we have certain weaknesses because we are sick. That means sometimes we have to ask for help. Although I've regained a lot of my functionality, I can't do everything myself. It's hard enough to raise children, cook meals, clean a 4-bed/2-bath house, and maintain a large yard while working from home when you're healthy! Much less when we are not well. My husband works full time, plus enough overtime to count as a second job, PLUS he goes to school full time in a RN program. He does not have the time for the ³house´ stuff and I try to accomplish as much as possible. I try to carry my share and his. I have to admit, though, that I can't get through a week without going into some tantrum about being overwhelmed. He will come home in the morn, and if he sees the dishwasher empty he will load it and start it, but I feel guilty he had to do that. I hate asking for help from the 2 out of 5 kids we have left at home, because I want them to focus on school. One is in college, the other in high school. Although, they do their own laundry and they each have two daily chores. At times when my health has been especially bad, I have actually had to ask for outside help. Never would I have ever done this before. It was not an option for me, not because I could not afford it back then, it was pride. Then as things started going downhill in my home I started feeling useless and guilty and because I could not work, I had no right to bring in outside help. That is how I felt. I feel a lot of guilt over asking for this help, and my guilt keeps me from asking for more help, from more people. It's a tough thing to deal with, especially when it's a battle to maintain a positive self-image while regularly saying, "I can't do it." Feelings like this are all part of accepting our illness. It took me a couple years to accept this and I still have a hard time with it. But accepting is not giving in to it. Accepting it is still not easy, I am learning to handle my limitations«yes handle, because I still try to ³do it all´, so ³handle´ is a control thing. I am doing better; I did manage, after 3 years to get some ssdi, some, not all of my back pay, only up to the acceptance date«.what a letdown. Plus it wasn¶t for FM«another story another time. I read my journal from last August and boy was I bad«.I am doing so much better now«.I am also in a ³Ticket to Work´ program that is vocationally rehabilitation and helping me get back to work. I am not a sit back and stay on SSDI kinda gal«.I need that part of´ me´ back. Once we stop expecting the next treatment to be "the answer," we can start being happy about making small improvements, one at a time, that eventually add up to making us feel a lot better. Once I accepted that I had to make some changes &manage, not ³handle´ my FM, I was able to make the changes that have allowed me to improve. I am working on things that make me feel less ³useless´ by doing one pile or one room at a time, then resting and doing one more. I am taking out of all my past jobs the parts I loved best and going to school to get a degree to do what I love, not what was stressing me out. Then I can bring an income to the table. That alone will improve my self-image.
My hubby does not allow me to have my pity parties any more, he does allow me to vent, but I am expected to snap out of it after a day«..My decisions are allowing me to feel more ³useful´ as a wife, mother, friend, and overall person. I am back to working in the community, after being off the grid for three years. I also recovered to the point where I do some work from home. By changing my life, I am getting my life back. I am working on not letting the pain become me or control me, but managing the pain to an extent that I am in control of it. If you're having a hard time accepting your illness and the changes it imposes on your life, you might benefit from some counseling. But what better help can you get from those who understand and have actual empathy for you. Just do not let everyone else¶s woes bring you down«.we try to have days where we say«.ok group, let¶s post a positive point, or a gratitude. I am sure you have seen them. Being a group leader helps me re-focus my efforts where they really matter. We cannot waste time or energy feeling guilty for something we have no control over. Allow yourself one day to feel bad, then promise yourself that tomorrow you will do one thing, as little as it may be, but you will do one thing to make yourself feel happy, to not feel ³useless´ (cuz you are far from it) and know that your FM¶ly is here for you too. I hope this article/letter has helped anyone reading it«.. I, or someone, is always near for you, listening and understanding«« FibroHugs JodieLyn Fibromite & Chronic Pain Survivor
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