I’m back…..

Some of my fellow bloggers and friends have asked me to keep posting.  As they said, if people find it boring they won’t read and that’s true I suppose.  So of you want an uplifting funny quirky blog,  leave now,  you’re in the wrong place sorry.

Hasn’t been a good week.  The fistula have opened up again, I’ve no idea why but it just devastates me.  I don’t know why I don’t cope with this.  I had a colostomy aged 25 when my daughter was 1,  life leading up to that was awful.  My husband was in the navy so I was on my own really and it was so hard but I coped.  I used to have to go to the loo 40 times a day,  I’d have blood transfusions but within days the new blood had gone as my colon tried to kill me.  I had abscesses on my body and inflammation in my eyes,  but I coped.  My parents helped a great deal,  my sister was only 13 so she didn’t really understand.  I remember when I had the colostomy my father put his arms round me and said ‘ what have they done to you’,  I was so thin.  But I coped and got on with it. That was just the start of it all but I’ve never coped as badly as now.  I think part of the problem is I look well so people don’t realise and / or understand.  Stephen cannot cope with me being ill and I cannot cope with this fistula.  Not a happy combo.

Today I have been painting outside,  lots of stops and starts but it was OK.  Tonight we had to go out to my aunties 60th birthday.  I looked at the fistula and became very upset at the deep gaping hole,  looks as bad as ever, here it goes again – it’s not going to heal plus something is changing inside – the pain is worse and the holes are bigger.  But I’m not Ill – I have no temperature and I feel OK.  I drag myself to the shower and wash my hair,  I spend a long time under the hot water wishing this would go away.  Therein lies the problem,  this is it,  this is me.  I dry my hair and put some make up on.  Stephen is already clock watching as he is a nightmare if we are going somewhere ,  he can’t ever be late.  I can feel my confidence sapping as time goes on.  I read stories on line from other sufferers who feel I should change consultant but I don’t want to, I still feel he is looking out for me.  I know the surgery hasn’t been successful not once but three times now,  but I also feel had I been in the hands of a less experienced surgeon two years ago, I could quite easily have died.  I get dressed and one of the bags has already leaked so I sort that out and Stephen is asking how long il be for the tenth time and do I want a drink.  No I don’t want a bloody drink!  I’ve barely eaten all day and the thought  of going to a boozy house party fills me with dread.   We argue,  which is now normal and my daughter walks in saying she can hear me shouting from the street which upsets me even more as I think my neighbours have heard my yelling.

We go to the party,  my aunty could see I’d been crying and asked what was wrong.  Torture.  We made our excuses and left – they understood as it was obvious something was wrong.  I will message her tomorrow and pop round in the week to explain,  she’s not in great health herself so she understands.

4 thoughts on “I’m back…..

  1. I am so glad you’re back! Write as and when you want to – don’t worry at all about being ‘uplifting’ in your posts, though I definitely understand the feeling that you need to be. I feel like writing a rather depressing rant right now. I’m sorry you’re still struggling so much with the fistula; is there any upcoming appointment to speak to someone about it? I am sure your aunty will just be so glad you managed to make an appearance, though saddened at your struggles. As for looking well but being anything but, that’s all part and parcel of having ‘invisible illnesses’ or ‘hidden’ problems that others can’t see, let alone understand; it can be so incredibly difficult to deal with, and I find for me there’s a sense of feeling almost like a fraud (but I look ok, so I can’t be in pain..). We’re here, we care, and we can ‘see’ some of what you’re going through.♥
    Caz xx

    Liked by 1 person

    1. Topsy

      Hi Caz, yes I’m in contact with my consultant but in all honesty there isn’t much that can be done. They won’t operate for at least 2 years so it’s all about managing it. I think the depression had taken hold which just blackens everythjng.
      My aunty was fine x
      I am glad I look well but it’s hard for people to understand. People react to cancer, heart problems, stroke or a visible problem like a broken leg but our problems are just invisible and therefore don’t exist, well to some people anyway x
      Here’s hoping next week is better for us x

      Liked by 1 person

  2. It’s hard because you want to know what is causing this so you can do something about it. But no-one helps us understand the why. Just more operations. Try not to be too hard on yourself, we all do it but when you are not well you are not well. x

    Liked by 1 person

  3. Topsy

    Hi – yes you are right. I’m not sure what caused my bowel to perforate that started all of this off. I cant see them operating again as I nearly died back in March during the repair op. So difficult to wake up to every day – life goes on but I seem stuck in a black hole at the moment x

    Like

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