Coming to a head

So I was lying in bed with the Baroness. I had a headache (all day) my stomach was doing cartwheels and I just felt awful. We're chatting, talking about understanding, the kids and just my general health.

It suddenly dawned on me, twenty one years down the line that I'm tired, so very tired. Tired in the literal sense and just so tired of being ill. Constantly ill for two decades. According to the doctors my recurring throat troubles, my aching joints, my continual stomach issues, etc are all 'side effects' of epilepsy medication. That and the fact that my brain is generally knackered anyway. I can't remember what it feels like to feel healthy.

And I cried.

The Baroness witnessed a mini breakdown. Yep, twenty years of feeling like crap finally got the better of me. The Baroness held my hand, gave me a little kiss, told me that we'd get through whatever, and that was that. It was over.

Hey ho

13 Replies

  • It hits like a hardball every so often doesn't it ; after years of putting on an 'OK' front.

    Thanks for that though Andy ; you've set ME off now ............. partly sympathy, partly self-pity. Hope you'll start to get your post- bi mojo back when the sun comes out again. :O

    Love Cat xx

  • Hi Andy, I'll throw my 2 pen'orth in to this.ive been going through something similar and I'm only 3 years down the line.

    I remember saying when I was first so grateful to still be here, that if this was as bad as it gets, that's ok I can live with that.

    But that was with rose tinted you I'm sick of feeling bad, everything is so hard to tackle. I have bath every morning to warm me up so I can get going then have to go back to bed for 20 mins to recover.

    I've only been swimming on my own twice so far this year because the effort of getting the bus, walking to the pool, getting undressed and swimming, then getting dry, walking back to the bus etc is just too much and if I taxi it both ways then I triple the cost.

    My mojo's gone too! Hopefully it'll come back soon.

    I had a book sent me by the Encephalitis society on dealing with chronic illness, and evidently this see-sawing of feeling good then bad is quite common and to be expected 😟

    Just remember we are here for you, you've been so strong for us all, it's our turn now.

    Much love Janet xx

  • hugs to you both,at least you got some emotion out of youre system! that is good.blessings

  • Its hard Andy but your a survivor and that must be for a reason!Youre needed and loved by your family and offer help reassurance and smiles to others.Tomorrow will be a brighter day :-)

    I'm looking forward to tomorrow too -the sunshine is coming later in the week :-)


  • Hi baron

    Fear not I'm sure the baroness appreciates that you are human.

    Sometimes I wonder if we measure our abilities now through rose tinted specs and that wonderful phenomenon of 20/20 hindsight.

    What I was is not what I am and what I could do is not what I can.

    What I am is good enough and what I can do I will leave to your imagination.

    Sorry rambling again and I am sure this low will pass.soon I hope.

    Love n hugs to you and the family


  • I totally believe that letting emotion out is part of the healing process, super impressed you cried, especially for a man. It'll help, might not seem like it, but it will.

    What a super strong relationship you have there, very lucky and she's right, you'll both get through it


  • It must be something in the air this last week I've had some really odd due's which I'm not liking at all feel like I have lost my get up and go as well and its only 2 years!!!!

    I've got a neurologist appointment tomorrow so lets see what that will bring seems I'm feeling worse since started taking meds for partial seizures.:(

  • Hi Andy, hope you've picked up a bit today.

    As. Janet says, you have supported us all so much.

    Your turn now.

    Heres a Headway hug for you and Mrs B :)

    Take care. Kx

  • Sad you feel bad, but glad you had a cry, and posted about it too. I too have spent the last couple of days alternating between bed (stupid head) and sofa and feel sick and tired of being bl**dy sick and tired. So we are all entitled to the occasional rant, and a good bawling.

    All power to the Baroness for giving you a hug and letting you let it all out too instead of telling you to 'pull yourself together' or something equally irrelevant.

    Hope your head eases up soon.

  • Definatley know how you feel I am coming up to 16 years of post bi this weekend.

    I get sick of feeling ill , then I feel guilty for not being satisfied with being alive.

    This I assure you is not the case as I am more than aware of how diferent things could have been. I am also greatfull of all the help I have recieved over the years to help me improve my life.

    But every now and then I just wish for one day of medication and pain free . I know this will not happen and I plan on being on this earth a long while yet.

    All those years stretching infront of me does sometimes feel daunting but the alternative is even less desirable.

    Right moan over lets see what 17 post bi brings. All the best and remember just because you are greatfull of being alive does not mean that you cant have a moan about its condition.

  • Hi Andy,

    Took me and my partner a few months to finally have a cry together over his stroke.

    I allowed myself a brief soggy private moment for my own changes recently ! That was brought on by a recent struggle with work change that has really highlighted my physical speed/endurance as the workload is now greater. The old me was so efficient. Oh well, back to business.Can only do my best as I am now.

    I think we can get so used to being strong and getting on with it that we can forget to grieve for our former easier life.

    As the song goes : 'Great Gosh Almighty, been a long time coming' : ) x

  • Oh man up you big pussy lol. Seriously though, we men all need now and again to just let it out, sometimes we forget how much we have suffered and it all becomes just part of our normal function, all the pain and discomfort is a base level. I think it's great and gives us a perspective on our lives now and again and often can give us the impetus needed to try and change some things to make us better. God knows I've been in a rut trying to lose weight now for years, but I'm not doing the things I should do to change that, until every so often I break down and realise that in order to change some things in my life, I need to change some things in my life! Good for you for demonstrating to the rest of us that even the tough rockers have a soft side...I mean.. Dude did you see that three legged dog on Britains got talent?..sniff...sniff...oh I promised myself I wouldn't cry.

  • Hi Andy,

    The new sofa obviously not doing the job it's supposed to, or perhaps it is, letting you relax enough to give vent to those feeling we all get and keep pressed down in the pressure cooker, safely locked away till the release valve pops.

    Not been on for a while because of similar downess and didn't want to depress anyone but guess this is what this forum is all about, support through the darker moments.

    Can't imagine, well to be honest, don't want to imagine is more accurate, what it must be like for you after so long, I'm only three and half years in and feeling low.

    The interesting thing though is that nobody had explained to me that a lot of the problems that you describe similar to mine are probably due to the anti-seizure meds. All I ever get is 'Its nothing to do with the tumour', 'nothing to do with the epilepsy' hten neuropsych saying its all real.

    I'm so glad your wife is strong, accepting and so supportive of the you that you are now and thanfully am blessed with a wife that is also supportive.

    I try and use distraction techniques to lift my mood carefully choosing things that I know I can accomplish to a reasonable standard.

    Best wishes, kindest thoughts and a big thanks to the Baroness for being there for you.


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