Thursday, March 18, 2010

Frustration, listen to me or PISS OFF!!

I’m trying really hard to stay positive and be realistic. I have made an effort to educate myself best I can and be proactive in daily living and also for a longer term plan. I know that this is not just going to go away and it is more than likely that it will remain in varying degrees for a looooong time!!! I can feel my frustration now rising with people around me. Everyone means well but it feels like they either are not listening or aren’t taking this seriously, or they are just plain not interested. People that should know better by now will drop in unannounced and talk and talk and talk …. Do I really have to remind people constantly that just because I look ok please don’t assume I am. The other thing that pisses me off is remarks like ‘in a few months when you are well again’ or ‘you’ll be fine before you know it’. I know that those comments come from a good place but THEY ARE NOT HELPFUL, it makes me feel like YOU ARE NOT LISTENING …aaaaahhhhhhhh!!!!!! Either listen to me or mind your own business please!

When will they ‘get it’???

To me it seems like the sensible thing to do is to start making plans and finding ways to live successfully with this rather than trying to deny its existence or to just sit and wait for a few months and see what happens. I know from past shitty experiences that I am an adaptable person and I can always find ways to feel productive. I have endured many challenges and I have always made the most of things rather than just giving in to them and allowing them to take life away from me. I have tried to express this to people around me and they all seem to think that I am being negative, I shouldn’t assume that it’s not going to get better soon and it’s to early to be changing things to accommodate this. I totally disagree, I see my willingness to embrace it as a positive move rather than a negative one ….

What do you think???


  1. I think that you should always make plans, shor-term and long-term. And if they don't work out then you can adapt and make new plans. Wouldn't this help you to stay in control and avoid the feeling that CFS is controlling you?

  2. Hi Lee. Takes an awfully long timr for people to 'get it' and some never do. When I was first ill I just could not hold a conversation so I told people that if they HAD to contact me it had to be via email (because then I could take my time about answering/spellchecking etc.) and warned them they might wait some time before they got a reply.

    I think your attitude to making plans, staring reality in the face is laudable. As Chris says you can always change the plans if the situation changes too. Better than slumping into misery and 'woe is me'.

    Good on yer ;O)

  3. I think your attitude is really positive! Adapting and making your life meaningful and being prepared for things to either stay the same or change is healthy healthy, in my opinion. It's just nearly impossible to explain to most people! The parameters for quality of life with cfs are just about the reverse in some ways to people with normal immune systems.

    This is a really good description of what people with this condition face from the outside world.
    The little cartoon dude grinding his teeth is awesome!


  4. I think you are right - you have to accept that ME is along for the ride with you, and then plan around it.

    I've almost given up on trying to explain life with ME to other people - I just try to get on with things. Fight the good fight, brother.

  5. Yer, I've pretty well given up explaining, and I've learned not to get too frustrated. In the first place they don't really understand it, in the second place it makes them feel uncomfortable - hence the minimising remarks.

    I try now to listen out for the signs that someone has got it. For example, the other day I was walking up the road with my neighbour. She asked me about my walking pole and why I needed it, was it pain? That is the first time anyone has had the courage to ask me outright.

    The next stage for you may be remedies - everyone has one. They just want this horrible thing to go away that's all.

    Your willingness to embrace it is, indeed, very positive and a sign of courage.

  6. This is such a difficult challenge, Lee, but you are definitely on the right track. A degree of acceptance is absolutely necessary in order to live with CFS. The sad truth is that this IS a chronic illness. Recovery is possible - and certainly improvement is possible - but to ignore the realities of living with CFS is to sentence yourself to continuously crash. You need to find a balance between acceptance and hope. I wrote two blog posts about exactly this subject a few years ago:

    And, as for other people, it takes a while for them to truly get it. I went through some really bad years with my mom - who I've always been close to - before we finally hit bottom in our relationship. After some long, difficult times, we're now better than ever. She went to a therapist specializing in families of the chronically ill. And I finally realized that her actions those years were actually because of how much she loved me - she was in denial for years, unable to accept that I could possibly be seriously ill. It's been a long, difficult process, but it has definitely gotten better.


  7. Thanks everyone! and thanks Sue for sharing the story about your Mum's reaction. It's nice to feel validated by people who really do understand. xx

  8. Everything I would have said has been said by everyone else. Sue's experience was especially helpful to me. In fact, I found Sue shortly after I started my own CFS blog, and I consider her kind of like my "CFS mentor." She has tons of experience and tons of information.

    The reason I dropped by today was that I wanted to let you know that I nominated you for the Happiness Award. Visit my blog for details. I'm looking forward to hearing what makes you happy!

  9. Hi Lee-

    I've found that living with this has been a series of adjustments including eventually letting go of some friendships with people who don't get it or need me to be a certain way.

    Like others have said acceptance is so important. It can take a long time or at least in my case it has taken a long time. There are so many people who have found meaningful lives in spite of this.

    It's quite a journey but there is a lot of support from people like us who do get it.

    Also, don't worry about putting pressure on yourself to be happy right now. It's okay to grieve and feel sad and angry. We've all been there.

    Keep writing.....

  10. Hi Lee!
    I think you have the right idea! To have plans for the future - or rather goals - is what keeps me going.
    I set myself goals in different "levels" from the ones I'm pretty sure I will be able to achieve to the ones that will only be achieved when I eventually get well again. This way I get to experience achievement as well as having something to reach for. I love the feeling every time I reach a goal (e.g. was able to walk so and so far or have been able to go by bus somewhere).

    Most of the time I've stopped trying to "educate" people. If they don't belive me or in ME ;-) , it's just a waste of energy.

    Sometimes people try to "help" with all sorts of advises, only problem is they never ask me if I want this "help" or if this is the help I need.

    Most of them mean well and probably would be horrified (or maybe offended?) if they knew that their "help" in fact make me more ill than I was before they started to "help" :-D

  11. Yeh I think you are right Chai, easier to just let people do and think what tey want to, it's to hard to educate some people. Oh and the idea of easy and more difficult goals is a great one!! That's a big help, thanks! :)

  12. I've concluded that most people who haven't experienced chronic fatigue themselves will never "get it". It's still annoying when people with no clue start lecturing me, but I'm learning to pick up the signals who to trust and who not to bother with.

    I'm firmly convinced that it's a stress-related illness aggravated by emotional repression. I've come across people who discouraged me from expressing how I was really feeling, saying I was putting "bad energy out there". I sometimes get this feedback from New-Agers who come across my blog. They mean well, but it's totally counter-productive; bottling those feelings of anger and frustration up is what caused the emotional center of my brain to go into overload in the first place!

    So Lee, let it out. Let it out! AAAAAAARRRGHH!

    That feels a bit better. :)

  13. Glad I could of any help! :-)

    I don't think CFS is stress-related as such.
    I think most (or at least many) who are bone-tired for a long period of time, regardless of why, will have trouble handling stress and will experience emotional outburst of all kinds.

    The way I see it, my body is fighting hard as it can to get rid of whatever is making me ill (the CFS). Just as if it was fighting of a flu or sinusitis. The difference being it takes more than a week to get rid of the CFS. Most people gets rather exhausted after a week of being down with the flu. No wonder CFS-sufferers have "chronic fatigue" ;-) First we got a disease and because of the disease we now have chronic fatige! I know there are a lot of "psyco's" ;-) who will turn it the other way round and say we have CFS because we can't handle stress - Sort of a question of who came first? The chicken or the egg? I think they don't have a clue about what they are talking about. Put them on hard manual labour, included sleep deprivation, for a month or two and lets see how they handle stress then ;-)

    CFS is a stupid name for this disease, as it's only referring to a single symptom. I saw someone comparing it to calling Parkinsons disease "chronic tremor syndrome".

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