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Another week has started before I'm ready for it.
I'm not in a good mood.
I went to the hospital today. The consultant told me that my tiredness is nothing to do with cf and I'd be ridiculously tired even if I didn't have cf. Great. What am I meant to do about that then?
I'm so frustrated. I can't cope with this anymore. Too much effort. Too much struggle. Too much pain. For what?
If I couldn't do my job because of cf then that would make sense, it would be difficult to cope with but at least it'd be reasonable. This is just completely unreasonable: cf, depression and stupid-life-ruining-exhaustion.
posted by Simba @ 8:55 PM
7 comments
7 Comments:
Hello Simba,
Sorry that you having such a bad day. I'd disagree about the tiredness not being to do with Cf but that is only my opinion and what a doctor once advised me. Your body works harder than 'other' people and so it stands to reason that you will feel tired.
Do you always sleep badly at night? I think my insomnia doesn't help my depressive thoughts but I try and do at least one thing a day for myself, which must sound SO cliche, but it really helps.
I've been reading your blogg for a while (I'm nosey) and without wanting to sound condescending, I've really enjoyed it and admired the things you do but I couldn't do half that. I'm painfully shy in 'real life' and to take on the job that you have takes a lot of guts or whatever. I've enjoyed your postiveness but understand the cr*pness that you feel too. Some people would choose not to face anything like you have and try and hide away and yet you don't and that is fantastic.
It feels a bit odd blabbing on to a stranger, but sone of what you say rings so true with how I feel sometimes.
I hope you feel better though and stay strong.
Kind wishes
Jayne
I understand your message based on the latter two points, but I will never comprehend the magnitude of the the cf part. Your being, your will, is so strong and motivational. 'Thus all our dignity consists in thought. It is on thought that we must depend for our recovery, not on space or time, which we could never fill. Let us strive to think well' by Blaise Pascal: Pensees
What reasons do they give for NOT blaming cf for your exhaustion?! Could it not be iron related or something like that. Diabetes? Something they haven't thought to look for? Anyway whenI read your post I thought of Emmie - she seems to experience much of what you are, and doesn't work because of it. I'm not suggesting for a moment that you give up work, just that there are others like you which always takes a wee bit of the sting out of situations!
I might read back through your blog and see what else springs to mind - I'm not sure if you take any exercise, but I know gentle exercise helps me from feeling exhausted all the time. Sorry Im' babbling like Jayne was ;) so I'll go now, and hope that things get better again.
take care
Fi who can't be bothered logging in...!
mpjgqmHi Simbs
Your virtual cf friends also think the tiredness could in part be something to do with cf. The point is, noone knows.
Everyone is so different. I heard of identical twins today brought up in the same home, who have very different personalities. Don't be cross or unkind to yourself for being tired. Try and think of a long sleep as a positive experience-a friend. 'Now I've had a good sleep, I have been energised' You know-power of positive thinking. Getting cross is a waste of energy.
Also diabetes and thyroid diffs. will play a part. So does genetics-I'm not exactly jumping all over the place all day and certainly not after 8 pm!
love p and m -who loves a good sleep xxxxxxxxxxxxxxxxxxxxxxx i'm like fi-easier to go anoymous!
well would be if i could spell anonymous!
I hope your week improved after Mon. I think you often feel disappointed after seeing your consultant. Have you considered seeing an alternative practioner e.g. a herbalist or an acupuncturist or a reflexologist? May be one of these may be able to help with your lack of energy, although you have many factors which may lead you to feeling tired e.g. c.f., thyroid , demanding job, little time or energy for exercise, lack of sunshine etc. Can you book some ice skating for next weekend or for day when you aren't working?
Don't be too hard on yourself, remember you are doing a important job and remember that you are a special, sensitive, thoughtful, kind and interesting person!
love, G xx
Hi hunni
Sorry to hear that not only is the exhaustion still crippling but that unhelpful doctors are saying its not CF-related. As you know, I have been struggling with the same issue for a few years now and used to have a consultant who seemed to think it was all in my head as it couldn't possibly be CF related.
WELL....I now have a new CF team and a new (wonderful!) consultant who says that tiredness and CF is a big issue that no one really understands. The more I've talked to other pwcf, the more I've discovered that for a lot of us, exhaustion IS a huge issue. For some reason it doesn't seem linked to being severely ill either...may be those of us who aren't desperately ill are actually staying well because our bodies are fighting incredibly hard? Don't let anyone tell you this isn't important. I'd say my exhaustion is actually one of the hardest parts of my whole CF to cope with. If you understand that it isn't your fault and that your body is just working it's socks off to try to fight the bugs, then you will probably immediately feel better. Once I accepted that I DID have reason to be so exhausted, I felt more able to deal with it and cope with it. I use a wheelchair a lot of the time when I'm tired and have learnt ways of maximising what I can do rather than focussing on what I can't do.
Sorry for the long babble, really just wanted to say I sympathise and to look after yourself! xxxx
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