Do others think of their illness practically all of the time?

Discussion in 'Fibromyalgia Main Forum' started by tennisnut, Jul 14, 2008.

  1. tennisnut

    tennisnut New Member

    On reflection, I have probably been battling with this illness in a lesser form since I was a teenager.

    However, it's only been in the last 4 years that my health has taken a real downward slide (following a replacement of a large amalgam dental filling).

    My point is that not a day goes by that I am not thinking about my illness. I'm not depressed, but I have been at various times. I suppose feeling constantly worn down and imprisoned in my home will have that effect.

    I know that others battle along in their own way, but how does any previously active, organizing, energetic person ever really cope?

    My life is my illness - my illness is my life.

    Any ideas?
  2. jasminetee

    jasminetee Member

    I can relate. I've taken a turn for the worse this past decade and it's constantly getting worse for me. It's with me 24/7 and much of that is incredibly painful and I can't believe how sick I am and how many different Sx I have and how many different kinds of pain attack at once.

    I "cope" because it hasn't killed me yet but honestly, I'm no longer afraid of heart attacks or something like that as long as it takes me when it happens. I've made up my mind to be happy in spite of it and so far that's working well for me. I think about the good things I have in my life and I come in here a lot because it helps me to read about others going through the same thing.

    I don't like to think about the future but I can't help but do it. I try to stay in the moment as much as possible but I use things to distract myself, like this MB, and tv and movies. It's so hard living like this day after day, min. by min.

  3. simonedb

    simonedb Member

    you might want to consider looking into gupta's amygdala program to deal with that aspect of cfs.
    I can relate, its hard not to think about it when you need to take it into considration every day. I had a doc and a therapist tell me once that I shouldnt let it become my identity but they really didnt understand how I need to plan every day so that I can lie down at intervals throughout day to keep going.
  4. janelle123

    janelle123 New Member

    Hi Tennisnut,

    I relate so much to what you're going through. Its so hard not to think of ME/CFS, because there are so many symptoms. I am also housebound and live in Australia. I was 16 when I got ill and its hard to do anything-isn't it? Ummm... at the moment my symptoms have flared, so I'm just taking it One Day at a Time. I've been trying to learn to meditate... that has helped me previously.

    Other than that, maybe trying to get out of the house with a wheelchair- to go out for coffee or my parents drop me off right outside the cafe and I can go in and sit down straight away. Besides that I really struggle with it... It sounds like its been really tough for you,
    Take care,
  5. tennisnut

    tennisnut New Member

    This is a fabulous website isn't it?

    To CALEDONIA - I hear what you are saying, but I don't think I have what it takes to be fun. It would all be a pretence and a phony and hard work. Because I can hardly bear to hear people talk - I want to back away from them, it's easier to isolate myself at present. I haven't given up that glimmer of hope though.

    Just can't work out whether I'm self pitying or just trying to survive.

    Cheers all, TN
  6. homesheba

    homesheba New Member

    and i hate it. it seems like even tho i try not to bring up how i am feelingeven with a friend-
    it still comes out.
    like i need to have someone to talk to.
    i am so bummed ut that even a few days ago-
    i still find some that dont believe fibro is real...
  7. JoFMS

    JoFMS New Member

    Hi tennisnut,

    Yes I think about my illness all the time. I don't have any hobby right now except for concentrating on getting better & researching - that is my hobby. In fact, I was just asked a question by an iridologist who said to me - what is your goal in life. So I replied 'to get better'. That is my goal and I hope to achieve it. After I get better, only then will I be able to set realistic goals.

    SOme people may think that it's better to distract yourself but I find - I have to listen to my body and know I cannot get better unless I give it my full attention so that's what I'm doing. Anything I do at the moment - must be for my health. I have spent years helping others - now it's time to help myself.

    I don't talk to people except my husband at the moment as I would just be talking about supplments, science and anything realting to my illness as it's my focus. Nothing else seems as important right now. I want to get better so I can be independant and not have to rely on my husband. i want to help other people recover once I am well and all this I cannot do unless I get better.

    So for the time being - I have put my life on hold to get better and focus on what's important, otherwise I'm no good for nothing anyway!

    If I think going to sit by the river and taking my dog swimming then I will go. If I think I may relapse - then I won't simple as that. I have had to become very strong to say no and stop worrying that people will think I am weird for not working and not going out etc but you know what all I can think is - if thats wot people want to think then lets just hope it doesn't happen to them. I also think I would think I was weird too before I got sick!

    People often tell me to stop researching as it might be making me sicker - but I won't give up until I have the answer as I don't belive it's a bout coping and accepting - I truly want to get better and believe our bodies can heal if we just concnetrate only on them.
  8. TeaBisqit

    TeaBisqit Member

    Most of the time, unless I'm flaring, I try to just do what I can do in a day, and I don't dwell on the illness. The only times I do are flares and when it comes to non-believing relatives. I want to bombard them with this disease, every bit of info in the world on it. Of course, it does no good, as they will never believe it unless they have it. But it drives me completely crazy that they refuse to believe I'm sick.
  9. greatgran

    greatgran Member

    Its the first thing on my mind when I awake and the last thing when I fall asleep. How can you not when it is with you 24/7?

    Maybe I am just a negative person but this illness has stolen my happiness. Oh, I try to go through the motions of being "normal" in front of my family and others but its phoney.

    When people ask me how I am , I say , just fine smile and go on, but in my mind I am thinking "if you only knew, but why say a word, first of all they would never understand, second probabley wouldn't care.

    I go from day to day trying to do the best I can, but my best is not good enough for me.

    I would love to have the old me back.

    God Bless,

  10. Pansygirl

    Pansygirl New Member

    Think of my FM 24/7 ~ even on my so called "good" days I still think about it because I have to remind myself to pace myself so it doesn't turn into a "bad" day.

    I would love to not think about it but it's a part of my life and I feel I need to listen to my body.

    I do try to distract myself but when one has pain and fatigue 24/7 that is hard to do. It's a catch 22 if I act normal then my family things I can do things I can't ........ and that doesn't help me either. So it's very frustrating to me.

    On my good days I try to work for maybe 5 min in my garden ~instead of 30 minutes before I got sick , same thing with other things I enjoy ~ that helps me to feel like I have a part of the old me .

    Gentle Hugs, Susan
  11. Rosiebud

    Rosiebud New Member

    how can I not think about it when I am in constant pain, when my 'life' has been taken from me, when everything I do is affected by this illness.

    Like Gran, its first think I think of when I wake up, because I'm in pain and the last thing at night, again because of the pain.

    We get no respite from it.

  12. tamsyn

    tamsyn Member

    Hi! Yes, it's hard to think about other things when you're unwell. Sometimes I feel like this illness consumes my thoughts. However, I belive there are two different ways we can think about our illness: 1) We can be consumed with negative thoughts about it all day long -- how it's stolen our lives etc. 2) we can think about it enough to take care, to think about pacing, to think about eating regularly and so forth. If I am in thinking mode #1, I'm really negtaive and down. If I'm in mode #2 (takes effort) then I'm thinking about my body in a more positive manner, about how I can take care of it and help it to heal.

    One more thing: thinking about other living beings (people or pets or even garden plants) can really help get me out of the "thinking about illness" groove. I try to do something good to another living being every day. This makes me feel less of a burden and more of an active particpiant in the planet. Even if I just scratch my dog and make him grin and feel good, then I've done some good in the world!

    Try to deliberately look for other things to think about...have times of the day when you focus on yourself and your illness (like when you write a journal, or take your meds) and then have other times of day when you shift the focus of your thoughts to others or to a hobby or passion. Good luck!
  13. mars_xmu

    mars_xmu New Member

    ....that is the question. I only think about it when I get breathless after a short walk, and when i see folks eating junk food. I never let the illness take over my life, its my enemy not my friend.
  14. star273

    star273 New Member

    I like so many others wake up thinking about it and go to bed thinking about it. Consistensy is the best thing for all of us I believe. Finding what works for you and doing it everyday. Yoga is a HUGE help. It gives you quiet time to think and be thankful for our blessings and the stretching is so important for our muscles. When I dont do yoga for a few days, I can immedietly feel the tension which in turn causes more pain. Yoga is a life saver and there are many levels of it for everyone. Also faith and trust in God help me. I know he will never give me more then I can handle. Sometimes it feels like it, but I can get through it.
    My husband went through cancer and treatments 8 years ago and the thing that helped him the most was his attitude. I will never forget his Dr. telling us that attitude is 80% of the way he feels. That spoke volumns to me. If he could go through what I saw him do, I can do it!
    I believe the hardest thing that we deal with, is that we look fine on the outside, but are dying inside. We have to stick together as a community and help each other until the world sees what we have as a real disease. WHAT WE HAVE IS REAL! God bless all of you and thank you all for being there. Everyone here helps each other in ways I dont think we realize!
  15. annazinn

    annazinn New Member

    I am at about the same place you are, Tennis. It's hard not to think about one's illness when medication and staying at home is what one does. I am trying to change that mindset by getting dressed and do little things around the house, or taking care of paperwork I have procrastinated on.

    I miss my old, active life. Maybe, some of this has to do with grieving for what was. I haven't even felt like praying about it, but that is my own stubborness.

    So I am going to see what healthy steps I can take towards doing things that will make my mental life healthier: less TV, very short walks (5 minutes), get dressed in morning, meditate, and try to get out after I do some of that. I too have withdrawn from people and it gets harder to get out there the longer I am away. I understand this happens with some people with CFS. Too many people at one time can seem overwhelming after being home a lot. Maybe it is a matter of babysteps. I don't know about you, but I don't like that I have withdrawn from life so much.
  16. Peace77

    Peace77 New Member

    24/7 Since every day and every moment is trying to control pain and my fatigue I can't help but think of it. At night I hope to sleep. During the afternoon I have to shut my eyes and rest to decrease pain and restore energy, because I can't rely on the pain meds all the time.

    What I hate is the people who think you would do more and don't understand when you tell them you can't do things like they can.
    Most people don't need naps every day.
    Most people don't need pain meds every day.
    Most people don't need to take something for insomnia.
    Most people don't have to sleep as much as I do and stay on a strict routine.

    Gentle hugs.
  17. tennisnut

    tennisnut New Member

    for the response to my question. I feel that thinking about my illness all the time mainly stems from feeling just plain "bad" every day - not easy to get away from.

    I am getting by in much the same way as JOFMS. Experience has taught me that outside of my household, people have no concept of the kind of trauma we deal with constantly.

    It's very good to be able to talk to fellow sufferers occasionally - a bit of a release valve.

    Cheers TN