Tuesday, 20 August 2019

Sorry, not sorry

The last few days have not been the easiest, sometimes living with this bloody disease just gets on top of me and whilst diversionary activities do help, when you don't sleep the world can look very grey and you feel crap. Most of the time I don't write this down here 'cos it's not something folk want to read about but I don't want to give credence to the trope that if you "fight" you win, that being cheerful all the time means a medical miracle is just round the corner and that every day will be roses and sunshine until you wander off peacefully "over the rainbow bridge", it just isn't. Sometimes you hurt and you want to scream, cry your eyes out or curl up into a ball to make it all go away. It doesn't and if you are lucky those you love hang around, let you cry and yell, hold your hand and help the bad days pass - and believe me I know I am very lucky and just hope that they too have someone they can talk to when their days turn grey and I'm a useless puddle of selfishness.
It will pass, panic attacks don't hang around for long and neither do my grey days. There will be flowers again, in fact we've been making sure of that this weekend - potting on cuttings and taking more - see it's not all been grey.


  1. I understand you completely. Tom has a terminal disease called IPF, it's a lung disease and is progressive.(he has never smoked and I think maybe the drugs he was on for 20 years caused it, thought I cannot prove it ) Although it's not me that is ill I am living with him a watching this thing progress and it's not easy. We have been together since I was 15 and him 21. He is almost 80 now.
    I have days when I am a wreck and others when I am positive.
    We take each day and try to make it a good one.

  2. You are not being selfish, if you are then I am selfish too and I won't accept that.

    Pain and hopelessness get the better of me at times and although I don't have a life threatening illness as you do, I have a life changing illness and I seem to be acquiring other illnesses too. As each new diagnosis comes it puts me a bit further down into the pit.

    Make the most of your good days, if you can and try to forget the negative thoughts of your bad days. I know it isn't easy, believe me.

    1. Thank you Joan. I hope that your days are more good than bad too.

  3. My mother is in exactly the same situation. I live 100+ miles away. We speak twice a day and I can tell instantly how she is when she answers the phone - some days brilliant, some days awful. I hate the 'fighting' and 'battling' labels. 'Living with' is a far better description. Tracy X

    1. Thank you Tracy and my best wishes to you and your Mum.

  4. You are never selfish. You are Amazing,Strong,Beautiful,kind,caring,talented,intelligent,loving and a million other beautiful things, the way your dealing with the disgusting decease is Astounding.
    We love you so very much and I'm proud to call you my Sister ❤️
    P.s. Paintings are brilliant you really are good at water colour xxxxxx


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