Discussion in 'Fibromyalgia Main Forum' started by Lolalee, Sep 24, 2006.

  1. Lolalee

    Lolalee New Member

    Hi Sweetie,

    I posted a reply to you on the other super-long thread. Just letting you know in case you didn't see it. Don't worry about responding if you're not up to it.

  2. 1sweetie

    1sweetie New Member

    I found it and started to respond but got so tired. There will be a short post for you on that thread but hopefully I will get a longer and better post to you tomorrow. I will find this thread and reply here.

    I am exhausted. I hope you sleep well, I think I'm falling asleep now.

  3. Lolalee

    Lolalee New Member

    Please take as long as you need. We sometimes lose track of time when we get on this site and it is exhausting.

    I've noticed that I might not have much pain when I sit at the computer and within 15 minutes my muscles are screaming. I try to watch my time here now.

    I want you to tell me that you've rested when we next talk.

  4. 1sweetie

    1sweetie New Member

    I feel better. After I posted to you last night, I told by DH I was going to bed but the dog needed to go out for a moment and I volunteered to take him on my way to bed. I sat down outside to wait for him and fell asleep on the patio. I probably slept there for 30 minutes. My dog woke me up. I guess my DH was going to leave me outside last night! Does the exhaustion just overcome you like that?

    I could not stay on my computer if I did not have a lap top. I use in while I am in the recliner or in bed. It is wonderful. If you get the opportunity to purchase one, it will be worth it. It will make it so much easier for you to use and it is much easier on your body

    It sounds like your brain works like mine. I do those type of things continually. I go from thing to thing and never finish anything. I forget what I am doing which makes for a lot of clutter and confusion.

    I do use timers. I have a timer that I can put around my neck. I also use the computer tasks on Microsoft Office and the calendar as my brain and I use the timer on my microwave to remind me to do things.

    I'm going to sign off again. I'm conserving my energy. Tonight we are going to celebrate my Mom's birthday. I'm going to get ready so that I can have time to rest before we leave.

    I will talk with you tomorrow.

  5. 1sweetie

    1sweetie New Member

    I'm back. I'm getting ready in stages. First the soak in the tub...recovery time....some makeup....recovery step is to dress and go. It's hard for a normal person to understand the process we have to go through to go somewhere. It takes me an entire day with all the rest periods that I have to take. I make all my appointments for afternoons and usually go really light with hair and not doing anything.

    There is nothing about my life that resembles my old life. You are making major changes also.

    It looks like I will be talking to you in segments.

    I am so happy the William Collinge's CD's are being such a help. I really believe that with a good mix of his idea's and Campbell's ideas, we will have a chance of improving our lives. Of course, we would like something instant and quicker but I just do not see that in the near future. There is not enough research being done...not enough $$$ being spent.

    Since you are so pleased with the material, I am going to order the CD's. I have used deep breathing exercises for a long time because of migraines. It really helped me when I had cancer and so many of the procedures were painful and done without any pain medication. I would just concentrate breath and pretend I was somewhere else. The mind is powerful. I am good at using these techniques when I am having a medical procedure or a massage but I forget to use them daily. It is amazing what a few deep breaths can do for you.

    I'm looking forward to getting the material and hopefully we can work the program together. Haylecole is doing a great job with Campbell's program. My doctor, Charles Lapp, wrote the introduction for Bruce Campbell. Dr.Lapp does only some supplements and what he call the StepWise approach...which is basically the same as Campbell's ideas. He believes in sugar, alcohol, tobacco, caffeine, and I can't remember the other one now.

    Got to proceed with getting ready. Time to dress.


  6. Lolalee

    Lolalee New Member

    Once again time has gotten away from me on the board, just reading posts, answering one or two. My first intention was to write to you and now I'm exhausted. I'll have to talk to you later, hon. boo hoo!!! Just can't do it now...need some bkfst, too.

    Happy Day,

  7. 1sweetie

    1sweetie New Member

    You know I understand. I've already been on the board and posted a few too. You would not believe how long it takes me sometimes to do that...well, I guess you would believe it.

    The dinner for Mom went well. I did good! The best I have since I crashed. Using that energy envelope is really helping me along with some new meds.

    I'm tired today. I tried to do a few things around the house and I should have rested. I'm going to take a break and order those CD's after while.

    I'll be checking back in.

    Question for you. On the other threads where we having been chatting as a group, we've decided to limit the # of post because none of us can handle long threads and we are trying to come up with a name so everyone will know where to go to chat on OT's. We want everyone to join in if they wish so we don't want the name to sound inclusive. The discussion is going on now on my thread to OT: Cromwell. If you feel like reading what has been written already, I wish you would give an opinion to a name.

    Talk with you later.
  8. Lolalee

    Lolalee New Member

    I was going to ask about your Mom's bday pty. Did you do any cooking? I'm glad it was a success and you did well. I hope you were able to just sit and enjoy the celebration with your Mom.

    I am going to look into buying laptop. I'm glad you mentioned that you use one because I've been thinking about it for a while.

    I'm glad to hear that you are going to purchase the Collinge CD's. I hope you like them. I am really getting a lot out of them. I have made a commitment to rest every afternoon and listen to one or two sessions. They are approx. 30 min long. The problem with me is sometimes I'm so tired that I fall asleep during the session. It must work while I'm asleep because I always wake up refreshed. I'll be really interested to get your feedback. Like I said before, I have hope that I will recover. I don't mean get cured, but I feel like I will gain some ground and start feeling better by resting and breathing properly, etc. It might take a couple of years, but at least I feel like I'm doing something and not just popping pills and being stuck.

    You poor thing, sitting outside sound asleep. I think your hubby would have noticed you were missing sooner or later. If he's anything like my husband, once he falls asleep, he's gone. So if it had been me, he would have found me in the morning.

    I've also done a little cleaning and washing today. I think I'd better quit while I'm ahead. I'll take a look at the post you mentioned and see if my brain will cooperate in coming up with a suggestion for a name. I think it is a good idea to let others feel welcome (although that might get confusing), otherwise, they might feel left out and we might seem "cliqueish" (sp?) (that would not be good).

    One more thing,Sweetie, you are going to have to remember what the "N" in SCANT stands for. It's driving me crazy..LOL.

    Til later,

    [This Message was Edited on 09/26/2006]
    [This Message was Edited on 09/26/2006]
  9. 1sweetie

    1sweetie New Member

    I just typed a long post to you and when I hit send it went to the big post graveyard.

    I will try again later.
  10. 1sweetie

    1sweetie New Member

    I'm finally going to try to another post on this thread. If it doesn't work this time, I'm going to start a new thread. What is so strange is that I attempted to order the CD's and I had problems with Pay Pal. I knew that the expiration date of my credit card had expired and I attempted to change it several times and it would tell me that they had that card on file. Many hours later it gave an error message and said that they had problems but everything was now corrected. I had gone to bed for the night when I saw that message and I did not get up to start again. I have not tried again. It's so strange. I will try again to order them shortly if I remember.

    When I read mrdads' and your post on growing up in Catholic Schools, it makes me grateful that I attended public school. When I grew up there was not the disciplinary problems that there are now. We respected the teachers and the best thing is that I deserved our respect. Their job demanded respect and they behaved accordingly. That is until I was in high school and my P.E. teacher and coach decided he had a crush on me. That was so confusing. I was young, a cheerleader, and he was also young...just graduated from college. I never thought of him in any way other than that of a teacher but he had different ideas. I never told made me so uncomfortable. Yes, I should write a book one day. Things that happen now have always happened. I didn't know how to handle the situation but eventually he moved to another school system. I often wonder how many girls did he "bother".

    You asked me what I had did to gain improvement and I am happy to share it with you. I still am extremely limited and am thinking of getting a chair because of the fatigue but I am better so here goes:

    First if you haven't you need to read my bio. It has the highlights of the last several years. The only thing that is not in there is the turmoil of my personal life which alone is amazing.

    I finally crashed in 2004. All body systems were in terrible distress. I barely remember the first year. I could barely get baths. I would fall because of orthostatic hypo tension. I was too fatigued to even go to the bathroom. I would wait until it was an emergency. The cognitive and memory function of my brain just about shut down for a long time. I could even remember how to turn on a computer, run bath water, write, use the TV was really bad. I could not find words and sometimes I could not express myself. One week it was like I was speaking a foreign language. I had severe shortness of breath, RLS, GERD, ears ringing, migraines, constant sore throat and swollen lymph nodes, IBS, severe flu like symptoms, and joint pains. I can not even remember everything. The FM did not truly start until the trip.

    When I first heard of preemptive rest, I thought they were crazy. All I was able to do was rest. The program was geared to someone much more healthy than I or the rest of the ones in our class. I attempted the class twice. I would get so confused with who was who and who said what. I had the same problems on the board. I could not remember who was who and what was said. I forgot my own post. That is why I feel bad now when people get irritated when people complain because everyone does not thank each one for their replies....I know what it it like to not be able to remember and not have the energy to do so. I could not do that although I did use their advice. In fact, I still have trouble answering all people that reply to a thread.

    I got off track but I wanted you to know how bad it has been:

    What changes I have made:

    Read Bruce Campbell's book and attempted the class twice

    Started taking Klonopin during the day time to help with Sensory Overload.

    Started taking a product called JUICE PLUS...a food supplement that was suggested to me by a PT.

    Make sure I take my B12 injection at least ever 4 days.

    Found massage therapists that are extremely knowledgeable about our diseases and pain in general. I now use two different ones. They are great with myofacial and trigger point release. Their techniques are quite different but the combo of the two is working for me. Make sure I have a massage at least ever 2 weeks...very important

    Make sure I eat on a regular time and eat protein. I try to do some of what Stormy said about just eating small portions of food and nibble on things that are healthy like almonds, yogurt, fruit...not large meals. Per our Porch Light thread you know I still have sugar. I feel better when I do eat some on occasion. I drink FIJI water(room Temp) , some coffee with honey, and ginger ale for nausea.

    I have started drinking l tbsp. of Vinegar with mother, honey, and warm water when I wake each morning. It's really not bad at all.

    Take detox baths...usually 4 or 5 per week. Great for pain and soreness.

    Introducing music into my life has been very important. I ordered several tapes by different artist. They work to calm me, ease pain, and help me sleep. I would be glad to give you the name and titles of some that I like most if you are interested.

    On occassion I have energy work performed (Reiki).

    I began to see a therapist on occassion to help me deal with some personal situations.

    I quit fighting the disease...actually I quit trying to reclaim my old life and am trying to make my new life work. I am accepting the fact that I have a chronic illness and that I must listen to my body.

    PACING....has been major. If you remember how I told you I got ready for my Mom's took an entire day and in fact the previous and prior day to make sure that I could go and would not do be any harm to myself.

    But Lolalee with doing all of that I was still in a very bad way. I was so depressed and nothing was really working until....

    The doctor added Abilify to my meds. It is a mood stabilizer. It is like the drug that helped Hayleycole so much. She is on Lamitical. I tried to take that but I developed the rash that can be deadly on the 11th day.
    It is designed for bipolar but they are using it for my cognitive problems, sensory overload, and mood (I was crying constantly). It has helped all of that plus it has helped my pain.

    I graded myself before as a 20...I am now a 30 or maybe a 35. That is major to me.

    I have written a book but I promised I would let you know what has helped me. If I loose this post, I am going to cry for sure.

  11. 1sweetie

    1sweetie New Member

  12. Lolalee

    Lolalee New Member

    Sorry, I've not gotten back to you. I just posted on the porch.....I'm exhausted.

    Will write soon..promise.

  13. Lolalee

    Lolalee New Member

    How are you today? Boy, the porch sure is getting to be the happenin' place!!! I was going to post a msg there but I got overwhelmed...didn't know where to start. I'm still feeling the effects of the weekend, I guess. It still surprises me that I can't go out, even to the grocery store, without paying the consequences. It seems that each time I push myself it takes me longer to recover.

    I printed a copy of your post so that I could have it in front of me when I replied to you. Re Catholic know I bet we would have gotten a good education in public school back then. My parents were very strict, though, and I really think that the disciplinary aspect of Catholic school appealed to them. I have two sisters and I was the only one who refused to go to Catholic High. They finally relented and allowed me to attend an all-girl public high school. It was a great school.

    I could identify with the story you told me about your P.E. teacher. When I was about 15 yrs old I got a part-time job at a 5&10 store. The manager of the store used to drive me home in the evenings after work. He was always extra-nice to me and I was very naive and self-conscious so it felt a little nice to have an older man pay attention to me. One evening right before Christmas vacation he drove me home and when I was about to get out of the car he put his arm out and stopped me. He handed me a small, wrapped Christmas gift. You can imagine how exciting that was. I looked up from the gift to say thank you and he kissed me full on the lips. I was so shocked and scared that I threw the small gift box at him and ran out of car. I never went back to work. Of course, I didn't tell my parents the truth of what had happened. Somehow, they would have made it my fault. OK, enough of my disfunctional childhood.

    Oh Sweetie, I had no idea that you have been so sick. How scarey that must have been for you. And to have your health compounded by personal challenges must have been very difficult. I've experienced a lot of stress in my life, as well. It is so hard to deal with these things when your ill. I remember when I was younger, people used to say, " you can handle just about anything if you have your health". I didn't know how true that was until now. Thanks for taking the time to share with me all that has helped you.

    It does take time and patience to get well, doesn't it. That is the biggest lesson I am learning. Just because I say that I'm going to rest and not push myself it doesn't change things. I have to actually have the patience to follow through and completely let go of that person I used to be. Easier said than done. I didn't realize how impatient I am. I finally figured out what I need to do but I have to have the patience to do it. Even if that means doing nothing but resting for days at a time. The biggest challenge being not to push when I feel a little better.

    I guess this is where faith in God is so important. On another thread someone talked about giving every burden to God on a daily basis and trusting, just like a small child, that everything will be ok just for today. Giving up control...not so easy.

    Well, my friend, believe it or not, it's taken me over an hour to write this because my DH came home for lunch, so I got distracted with him and other things (like cleaning the kitchen floor) which I'll probably pay for later. Oh Sweetie, when will I ever learn? I'm definitely going to rest now....get a bite to eat, too.

    [This Message was Edited on 10/03/2006]
    [This Message was Edited on 10/03/2006]
  14. 1sweetie

    1sweetie New Member

    I think we are being forced to learn. Until recently I had no choice...I was just too sick but I was so unhappy that I didn't really see a reason to be here any more. I just felt like a burden and no one understood.

    How can we expect to change how we think, when our entire lives we lived up to a certain work ethic? We did not want to be lazy...we could do it all and better than everyone else. It was a challenge to us. How do you unlearn everything that you have been? We wanted everything to be perfect. It took a long time for us to get this way and it will take a long time to change.

    I think both of us are finally seeing the effects of not putting our bodies...both physically and mentally first. As Dr. Cheney says and I believe him...our bodies keep us this way to protect us from killing ourselves. We were not doing a very good job.

    I still push myself just like you. Sometimes it is to stay on the message board. It can't be just us that it affects. I haven't been back to the Porch since early this morning. It is beginning to confuse me also. Things are moving quickly and going in different directions.

    Well I thought I lost this post but it found it's way to the board. I'm thankful. My son just walked in and I need to speak to him. Talk with you later.

    I am blessed because I have had someone to clean my house even when I was working since I got cancer. I have 2 new people that are doing it now and I have known them for years but just the change of someone else in my home exhausts me. I feel guilty complaining because I know I am blessed but I feel like I should be helping and I try. So right now I'm exhausted and I will be tomorrow also. I just get tired talking and with the commotion in my home. I don' want them to think I am lazy.

    I am at my best when it is just me and it is quite and I play my tapes. I know that is not normal but that is the way it is and I have to accommodate my body now.

    It exhausted me yesterday when my daughter and her dog came to visit. That is when I really hate these diseases. I just want to be a normal Mom and I try to not let it show but after a few hours, I was really ready for them to leave. That makes me feel so guilty because I love them so much but it just tires me to be around people and I really try to pretend I'm alright around her. I'm afraid if I don't she will not be comfortable about coming home. My husband does understand this though and that helps me.
    [This Message was Edited on 10/03/2006]
  15. Lolalee

    Lolalee New Member

    How was your day? I didn't push myself too much today. I did prune back some unsightly plants and managed to stop before I got a sore throat (my signal that I've pushed too much). I just can't keep up with our landscaping anymore. I used to love it and could spend hours outdoors just playing in the dirt. It's pretty much self-tending, but it does require weeding and pruning and fertilizing. We had our home renovated a couple of years ago and had a landscape architect design a rustic outdoor look for our property. We have no grass, just lots of plants that are native to this area, i.e. Camellias, Azaleas, Agapanthus, Sweet Olive, Hostas, Lantana (various colors), Liriope, Ferns, English Ivy, Creeping Fig, Hibiscus, Various Roses, Annuals, Perennials and many more. The outdoor area is divided into several "rooms". My favorite outdoor room is my kitchen garden where I grow many different herbs, including a bay (laurel) tree. It has outdoor chairs and a gorgeous water fountain that looks like something you would see in Tuscany. I like to decorate the outdoors with stone carvings of interest...I love bunnies and turtles and birds.

    Our small town is beautiful. Every corner in our small downtown shopping area has a good-sized flower bed. The city replaces the flowers with the change of seasons and they throw all the old flowers (roots and all) in a huge heap in the town dump. When I was feeling better, I used to go to the dump and load up on free plants. It kills me that I can't do that anymore.

    Today I spent some time talking to my sweet neighbor across the fence. She's a lovely lady with 2 darling little Yorkies. Made me want to get a puppy for myself. I've been thinking of getting a pet. I've never been much of a pet person. We never had pets when we were young. When our boys were home, we had a cat for a while, but the boys tormented that poor thing until she lost her mind. She became very vindictive. I was the one who took care of her and fought to keep her. But the last straw was one morning, when my husband got up and opened our bedroom door headed to the kitchen to make coffee. I heard him yell an expletive and I thought...oh no, what did Christina (the cat) do this time. She had gone poo right outside our bedroom door and my DH stepped in it barefoot. YUK!! That was the end of Christina.

    But, I do sometimes think a sweet pet might be comforting. I've always been kind of prissy, though, so I'm not crazy about the training part of having a pet. I've got a girlfriend who calls me Miss Priss because I hate to get barbeque sauce on my fingers from eating ribs. Oh Sweetie, I've probably given you too much information about're probably thinking..she's pretty weird. I don't have OCD, though. Oh well, we've all got something right!

    I used to have a WONDERFUL cleaning lady when we lived in Texas. She totally spoiled me for any future cleaning people. I might just have to "bite the bullet" though and try to find someone to come in at least once or twice a month.

    Oh, hon, I can totally relate to loving peace and quiet. I am perfectly content to be at home alone with me for company (and maybe a little doggie). My DH is retired but he keeps busy so even when he is home, it's like he's not. Right now he's doing construction work with a buddy.

    About your daughter, I can imagine how you felt. It's really hard to communicate and takes so much energy. Last Christmas our 3 sons were going to come and visit. It's been many, many years since we have all been together for Christmas. To be honest, even though I was looking forward to our reunion, I was a bit nervous about have 3 adult sons, 1 daughter-in-law and 4 grandchildren ages 6-2 stay with us for close to a week. At the last minute, my daughter-in-law had to have an emergency hysterectomy so they couldn't come. We ended up having a quiet Christmas with 2 of our boys. We had a lovely time, but even that was too much for me.

    Oh, well, Sweetie, we'll get through this, won't we. One day things will be a lot better and we will be able to look back on these days and say "remember when".

    Bless you,


    [This Message was Edited on 10/04/2006]
    [This Message was Edited on 10/04/2006]
  16. Lolalee

    Lolalee New Member

  17. Lolalee

    Lolalee New Member

    Oh hon, I just read about the young man who passed away and wanted to tell you that I'm thinking of you. I'm so sorry. Poor is just too hard and too much for some of us.

    I don't have the energy to drag myself to the Porch this morning, but I just wanted to let you know that my heart feels for you.


    [This Message was Edited on 10/06/2006]
  18. Lolalee

    Lolalee New Member

  19. 1sweetie

    1sweetie New Member

    I found this thread again last night and I was so exhausted that I was falling asleep sitting up again. At least this time, it was the recliner.

    Honestly, I feel really bad but I wanted to talk with you. I can't think clearly enough to visit the Porch yet...I know you understand. I saw that you started the Thread. Glad to see that. I did read the one I started yesterday and the current posts on the one you started.

    As I stated when I started the thread I mentioned the weather was changing and that it was raining. I got the thread started quickly and started a real post to everyone. I had welcomed all the new comers and a response to all of the "regulars" and as I finished the satellite system that operates my computer went down and I lost everything again. Both my TV & computer are satellite driven.

    It had been challenging to write yesterday and I just could not do it again. I was exhausted.

    The technicians that installed the "mold unit" in my bonus room came right after the long post was lost and I had to keep my 110 lb lab that does not want anyone near me or our house from biting them until 2:30 pm yesterday. It has put me into a flare. The unit is out and a new one installed we have to have a mold cleanup and make sure this unit works. I have missed my space so much. It was my safety zone.

    If I were you I would think twice about having an animal. I love him so much but he is particularly "needie"...very spoiled, self centered, and quite a handful. He requires nearly as much attention as a 2 year old child. He was born high strung..doesn't like people around me at all and very jealous of me. Yet there is no one on this earth that loves me as unconditionally as he does. He worships me. I know in my heart, I would have a better chance of recovery because I could rest but I have to weight that against being lonely. I wish I could have the Dog Whisper come here...we need him. I love watching his shows and I have used some of his techniques. What I learned was how they are pack animals and my dog was trying to be head of the pack and my DH allowed it. It's a very confusing situation for both me and the dog. My husband purchased a dog that is high maintenance and high energy for a very sick person. It's hard to mesh his needs and mine.

    Thank you for your kind words about my young ex neighbor that died. He lived beside me for 21 years and for most of those years my house was his house. My daughter would baby sit him at the house during the summer when he was young. He and my son were so close until the drugs drove such a wedge between them. For a long time after he began using and was in trouble with the law, my son would fish with him. He would talk to my son and he said he was the only friend he had that really cared for him and that did not do drugs. My son and I talked and talked to him but the drugs always won.

    Now I am carrying all this guilt about not seeing anyone since I have been sick. I do not know how to handle the visitation and funeral. Not only am I sick, all of my nice clothes that I had are now 1 size too small. I certainly can't go shopping and to the funeral also. I sent a special floral arrangement that had a fishing rod on it. The only thing I can think that I can maybe do is to go to the home for a few minutes and stop by the funeral home during a time when it is not the set visitation time. I just can't physically do all of this. I have worried about things like this since I have been so sick. I always did the right things before and now I'm not able but people do not know that.

    Lolalee, I know you are a Christian and I have worried about where he stood with the Lord when he died. There is nothing I can do about that now though.

    Thanks for listening. I will talk with you later. I have to rest.

  20. 1sweetie

    1sweetie New Member