Pouring my heart out...

Discussion in 'Fibromyalgia Main Forum' started by gentlee, Sep 25, 2002.

  1. gentlee

    gentlee New Member

    Where to start? Some of you might remember I spoke about creatine injections for CFS a while ago and how enthusiastic I was about the results. In July I was doing so well on the injections I even started looking for part time work after the summer. Sadly, the creatine I am now taking in liquid form is not working even half so well. In fact, I doubt it is doing anything at all, given that I feel as ill with it as without. And the job search is in any case (destiny protecting me?!) looking rather hopeless. There are hardly any ads for part time as unemployment here in Italy is quite high. People are so desperate to work they will do any jobs, including many hard manual factory ones, even if they are qualified to do other things. I am signed up with quite a few temp agencies, but they admit part time is like gold dust, even though they appreciate my skills.

    On the one hand I was looking forward to working again. I felt I could manage it (just), with a lot of 'rest engineering'. I didn't know who was going to clean the house, but never mind. On the other hand I increasingly felt (and still feel) I was not physically or mentally able to do a job, even a part time desk job if one could be found. I've had some offers for some language teaching hours which I am starting to accept in desperation. Teaching of any sort wipes me out and gives me headaches for the concentration. BUT... after seven months with no salary and no state help I feel that having any income at all would be a psychological boost. I know there are a lot of teachers in here, and how they must be struggling too. And I know there are sufferers forced to work as they have no state help or partner support.

    Meanwhile, my boyfriend is working in a factory (a heavy dirty job) and supporting me, often doing overtime to get us by. Obviously, we are feeling the strain financially but more importantly it's putting a strain on our relationship. The worst thing is we don't talk about it, me because I am afraid of being even more selfish than I have to be and making him remember the problem, he (I assume) because he tends not to talk about problems in general. When I first stopped my teaching job he was the one who convinced me to stay on and be supported by him. I wasn't sure about accepting this, but in the end it seemed better than a long separation. One friend keeps reminding me that not every partner would do this so willingly, and of course this is true. However, although he now after some struggle believes I have a real illness, he is not well informed about the details and finds it hard to live with my myriad of capricious symptoms (typically lately: backache, neck ache, shoulder ache, sleep disturbance (taking anti-depressant drops to help this), headache, poor concentration, possible candida (following posts on this with interest). When I am lying down in the dark with lavander balm and a cold compress on my forehead looking like a mummy I know it is really hard for him, and he suffers as much emotionally as I physically. I am concerned that his perception of me has altered so much from when we met two years ago, that he wonders what's happened. Where is the girl he fell in love with? The one who used to socialise and go jogging...

    The main point is I am so so sick of this illness, and increasingly am having moments of despair like many others I've been reading here. For many months I had strong hope and determination, and even some patience. But as time goes on, and I feel as ill as ever, I start to doubt the very expensive doctor, even though he's the only one who has helped me so far with CFS. My next appointment is 8 October, and I am stressed about it as I will have to report a lot of negative feedback this time, whereas last time things were going great. I plan to ask about magnesium and vitamin B injections etc, to see if there are viable alternatives. During the last appointment, the doctor warned me when it was going well not to cry victory too soon...

    I read in one of my M.E. books about how important it is to live your life for the moment and not only wait to be 'better', because it may take a long time and may not even happen. A close friend of mine has suffered from FM and CFS for over 17 years now. I have tried so hard to sustain myself, and friends and family have been very supportive. But this is the hardest test of my courage so far. The rest of my life seems easy compared to this, even though I may have complained in the past. I don't want to lose a good relationship to illness (as well as my job and other activities), though I appreciate many do, it figures. I followed the posts about things we have gained from illness, and there are many too. Like real strength, forebearance and empathy for others. I haven't considered counselling yet as there is no way we can afford it. I must find out if the state can at least provide this... from my not very CFS friendly local doctor. Thinking about trying to explain it Again is stressful, even if that doctor is a good listener. I also would not want to see a counseller who is not properly informed about CFS. I don't need to hear that if only I will pull myself together... etc.
    Phew! Hope it makes sense. Thanks for listening!

    Liz
    PS Although I was diagnosed this year I had already suffered for a year before that, and continued to work - I don't know how - as normal before realising I couldn't go on. Logically, I should not be working as I realise it could impede any recovery. But equally I don't think I can watch my boyfriend pushing himself like this indefinitely. He gets back ache and swollen hands from his job. I worry he'll get CFS or worse. The alternative is to go back to UK to my parents and receive at least some income or disability support. And to constantly fight with my mum! And probably lose my boyfriend.
  2. gentlee

    gentlee New Member

    Where to start? Some of you might remember I spoke about creatine injections for CFS a while ago and how enthusiastic I was about the results. In July I was doing so well on the injections I even started looking for part time work after the summer. Sadly, the creatine I am now taking in liquid form is not working even half so well. In fact, I doubt it is doing anything at all, given that I feel as ill with it as without. And the job search is in any case (destiny protecting me?!) looking rather hopeless. There are hardly any ads for part time as unemployment here in Italy is quite high. People are so desperate to work they will do any jobs, including many hard manual factory ones, even if they are qualified to do other things. I am signed up with quite a few temp agencies, but they admit part time is like gold dust, even though they appreciate my skills.

    On the one hand I was looking forward to working again. I felt I could manage it (just), with a lot of 'rest engineering'. I didn't know who was going to clean the house, but never mind. On the other hand I increasingly felt (and still feel) I was not physically or mentally able to do a job, even a part time desk job if one could be found. I've had some offers for some language teaching hours which I am starting to accept in desperation. Teaching of any sort wipes me out and gives me headaches for the concentration. BUT... after seven months with no salary and no state help I feel that having any income at all would be a psychological boost. I know there are a lot of teachers in here, and how they must be struggling too. And I know there are sufferers forced to work as they have no state help or partner support.

    Meanwhile, my boyfriend is working in a factory (a heavy dirty job) and supporting me, often doing overtime to get us by. Obviously, we are feeling the strain financially but more importantly it's putting a strain on our relationship. The worst thing is we don't talk about it, me because I am afraid of being even more selfish than I have to be and making him remember the problem, he (I assume) because he tends not to talk about problems in general. When I first stopped my teaching job he was the one who convinced me to stay on and be supported by him. I wasn't sure about accepting this, but in the end it seemed better than a long separation. One friend keeps reminding me that not every partner would do this so willingly, and of course this is true. However, although he now after some struggle believes I have a real illness, he is not well informed about the details and finds it hard to live with my myriad of capricious symptoms (typically lately: backache, neck ache, shoulder ache, sleep disturbance (taking anti-depressant drops to help this), headache, poor concentration, possible candida (following posts on this with interest). When I am lying down in the dark with lavander balm and a cold compress on my forehead looking like a mummy I know it is really hard for him, and he suffers as much emotionally as I physically. I am concerned that his perception of me has altered so much from when we met two years ago, that he wonders what's happened. Where is the girl he fell in love with? The one who used to socialise and go jogging...

    The main point is I am so so sick of this illness, and increasingly am having moments of despair like many others I've been reading here. For many months I had strong hope and determination, and even some patience. But as time goes on, and I feel as ill as ever, I start to doubt the very expensive doctor, even though he's the only one who has helped me so far with CFS. My next appointment is 8 October, and I am stressed about it as I will have to report a lot of negative feedback this time, whereas last time things were going great. I plan to ask about magnesium and vitamin B injections etc, to see if there are viable alternatives. During the last appointment, the doctor warned me when it was going well not to cry victory too soon...

    I read in one of my M.E. books about how important it is to live your life for the moment and not only wait to be 'better', because it may take a long time and may not even happen. A close friend of mine has suffered from FM and CFS for over 17 years now. I have tried so hard to sustain myself, and friends and family have been very supportive. But this is the hardest test of my courage so far. The rest of my life seems easy compared to this, even though I may have complained in the past. I don't want to lose a good relationship to illness (as well as my job and other activities), though I appreciate many do, it figures. I followed the posts about things we have gained from illness, and there are many too. Like real strength, forebearance and empathy for others. I haven't considered counselling yet as there is no way we can afford it. I must find out if the state can at least provide this... from my not very CFS friendly local doctor. Thinking about trying to explain it Again is stressful, even if that doctor is a good listener. I also would not want to see a counseller who is not properly informed about CFS. I don't need to hear that if only I will pull myself together... etc.
    Phew! Hope it makes sense. Thanks for listening!

    Liz
    PS Although I was diagnosed this year I had already suffered for a year before that, and continued to work - I don't know how - as normal before realising I couldn't go on. Logically, I should not be working as I realise it could impede any recovery. But equally I don't think I can watch my boyfriend pushing himself like this indefinitely. He gets back ache and swollen hands from his job. I worry he'll get CFS or worse. The alternative is to go back to UK to my parents and receive at least some income or disability support. And to constantly fight with my mum! And probably lose my boyfriend.
  3. karen2002

    karen2002 New Member

    So Sorry Liz....I know what a struggle you are going thru...The way our loved ones perceive us, is so important through the course of this DD. Many, here, are simply unable to get out into the outside world, so these relationships are the only we have, (not to mention the most cherished). So often, when I am discouraged and fed up, I believe my loved ones emotions and disheartened attitudes, emulate mine. I think I am sick to death of all that this affliction entails--they must be too! I begin to go down the path of being convinced that they are resenting my dependency, despising the extra work load, and just plain bored to tears, over my neverending complaining.
    Usually though, this process happens because, I have withdrawn, and are not reaching out to them. They too, know how bad we feel, and don't want to burden us, with any complaints on their part. It is at times like these---that I have found saying to my partner of 31 years, "I really feel discouraged, I know you are going through so much now, tell me the things that discourage or bother you."
    They need this time to vent. It opens the door for communication. As equally important--I always find out, that the number one complaint is...that they can't fix this for me. Its not all the other things I have thought in my down moments. Communicating, is so important in a relationship--especially one that has this kind of burden placed upon it.
    BTW---I am willing to bet that he didn't fall in love with the girl because she was the best socializer on earth--and a fantastic jogger, lol.....bet is was some of those great attributes I can see shining through in your post. You still have those.
    The work, the physicians, all these pale in comparison to the love and emotional ties in our lives.
    Gentle Hugs---Karen
  4. gentlee

    gentlee New Member

    For your warm support. Even just writing my long message and then reading your answer helped a lot. You are right about the past sporty life, I was never a great jogger anyway(20 mins slowly once round the park, more for the fresh air and view of the Eiffel Tower... )!!! And you are right that there are so many other important things than those we can't access right now. If I am honest, not working would not depress me so much if it weren't for the enormous financial consequences, so at least I am not a budding career person to have to that regret as well. I'm quite a skilled 'housewife' by now, experience which I am sure will not be wasted in the future! I cook quite a lot, while listening to music, I find it relaxing. And I restarted yoga at home today.
    Thanks again,
    love
    Liz
  5. kadywill

    kadywill New Member

    Karen's reply was right on! You both put into words exactly how I feel. We must persevere in spite of the tendency to give up. I am still employed fulltime as a nurse and I strongly feel that this is the only reason that I have no remissions~~~I am in a state of constant flares! There are no flare-ups...it always "is what it is" and my symptoms are always bad. The last time I had a remission of symptoms was probably five years ago. Working to help others does help my mental attitude somewhat, but physically I am a wreck due to overwhelming fatigue. I wonder how long it'll be before I make a serious med error or a charting error that will land me in a courtroom fighting for my license! I am fortunate that I've worked at this job for 6 years and my co-workers understand that I'm ill, but I know that I can't continue this pace forever. I work three days and am off one day, then I work four days and am off two. I am on my feet for 8 full hours! This is in addition to the emotional stress of having to rush and hurry and fix everything for everyone.....not to mention the grief I feel when one of my patients dies, which is often because I work in longterm care.
    My point is, you will have fewer flares if you can take care of yourself now. I KNOW this for a fact.
    Take care of yourself!

    To your health!
    Kady
  6. gentlee

    gentlee New Member

    Thanks Kady. I hope you will also be able take good care of yourself. Your message sounds quite worrying, both for you and your patients. When I left my teaching job in February it was a lot to do with how the brain fog not only made me looka complete idiot but prevented me from doing my job at all as I wished. It was just getting worse and worse. I couldn't follow a question from start to finish and kept hoping they wouldn't have any! Your job has more serious consequences, obviously. I hope you get all the help you can and find someone to look after you for a change from time to time. Thanks for supporting me in my decision about (not) working, it really helps especially when some people around me who don't understand make comments about 'if only you could get a full time job' etc. making me want to scream!
    Hugs
    Liz