Thursday 4 August 2011

From RAGS to Riches

I've really struggled as to whether to post this. When I first started this blog, I thought it would be full of posts such as this one, as I was really only blogging for myself, to make sense of things, however in the past year this blog has changed, and I am really proud of where it has gone and the audience that it receives. And I'm glad that it is a resource for many who are either going through the NICU journey, supporting others, or picking up the pieces of their own lives after a traumatic birth experience.

However, I feel that now I am shying away from sharing my feelings. I don't want to upset people (how very British have I become?). This post is especially hard, because I really want to talk about the resentment, anger, guilt and and sadness I am feeling (RAGS - good innit? Well I thought so). I did initially think of using a service call Blognonymous but then thought why should I? Why should I have to stay anonymous? And then would it be anonymous? Pretty much everyone would know it was me anyway.  But before I start I have this to say:


I know that many people who read this have gone through the death of a baby, and don't have one to hold, or have a gaping hole in their family. I know there are people who read this that don't have a baby at all and are struggling with infertility. And then, are my dear friends, who are pregnant again, many of them following birth trauma and/or prematurity. What I want to say is, I don't want to upset anyone. I know how lucky we are to have a healthy toddler. To my friends, I am overjoyed you are pregnant, really. I mean it. I just wish to God that I could be a bump buddy, I am jealous, but that is not your fault, nor is it mine. And I don't want you to stop talking about your pregnancies, your babies and your children, but be prepared that I might say, today is not a good day to talk about this to me, but that doesn't mean that tomorrow may not be a better day.

I am feeling angry. I hate anger. Righteous anger maybe, but this is a jealous, self-pitying anger that isn't directed at anyone. I am just angry. And where do you go with that? And my anger, and resentment is making me sad. So sad that I went to the GP. And you know what she did? She wrote me a prescription for citalopram. This was over a month ago. I haven't filled it but I carry the script around in case I happen to change my mind.


She committed a cardinal sin, in my eyes. She made assumptions and prejudgements. She took one look at me and my history and wrote a prescription. I had asked for talking therapies (as recommended as first line treatment by NICE guidelines) and she basically said "oh there's a massive waiting list its a waste of time". That makes me angry. I have been told this twice before, the first time in pregnancy, the second, after Joseph came home and I was struggling. Both times I said "fine, refer me privately". I no longer have the means to go private.  That makes me angry, that I have relieved the pressure from the NHS, and have not been rewarded with help when I need it and can't afford it. I strongly believe the treatment I had in pregnancy saved my life. My therapist thought there was a physical basis for how I was feeling, and he was spot on. He prepared me for what was to come.

I tolder the doctor that I would not take the citalopram, as it makes me sick. She wrote me second prescription for anti-nausea meds. I explained that I have had them before and they make me sleepy. She suggested that I get help with Joseph. Send him to his grandparents........see, not listening. And that makes me even more angry. I am not a kid, I am a grown woman. I want to be supported in my health decisions, not treated like an idiot. I have never been a non-compliant patient before, and it makes me uncomfortable.

I feel I just need to talk about it, and maybe CBT and/or EMDR might help me to get through this brick wall I seem to have hit. But I just don't have the resources. And I feel anger that the NHS saved my life by chopping me up and fishing my baby out, but won't help pick up the pieces. And I think that is wrong. I just want a six to eight week course of talking therapies, is that really too much to ask?

And I am angry about pre-eclmapsia. I am angry about the myths, the ignorance, and the very fact this fucking illness (gosh angrier than I thought, sorry) can't be treated or cured except through drastic measures. And it's not for want of trying. There are research projects out there trying to crack the code, but its illusive. There is no definitive treatment or real prevention other than careful monitoring, aspirin and anti hypertensives.

And yet, there is balance. Although I feel anger, and a degree of resentment, and also some guilt that I feel this way, I feel immensely blessed. I wish that pre eclampsia did not exist, this is true, but do I feel I have been blessed because of its impact on my life, then the answer is resoundedly yes.

I have learnt to take nothing for granted. You never know when your health and indeed your life is on the line. I have learnt patience, I have learnt true joy and happiness. And I have the cleverest, most beautiful little boy in the whole world.

And I now need to learn to live with the fact that the family I wanted, the two kids, a nice husband and a cat, is somewhat diminished, two one kid, a nice husband and a cat. But that is still a wonderful thing.

15 comments:

  1. Angry? A little ;)
    Beautiful and heartfelt? Most definitely ;)
    Joseph is amazing, as are you, but I too feel sad and a little angry that your family is complete. You SHOULD be having a brother or sister for Joseph, and if I could wave a magic wand and make it all better I certainly would be the first in the queue to do so.
    Furthermore, I think possibly a change of GP may be in order......I'm cross that your GP didn't listen to you, and instead chose to spend more money on drugs...these will only 'mask' the underlying issues and not help to solve them.

    I don't really know much about the support out there for preemie mums, but is there a helpline that can help you to get a referral? Or just a suggestion.....could you go and give some talks to others who are in a similar situation now. You may find it helps a little, I know that writing/talking always makes me feel as if I have 'achieved' something.

    Much love to you and your gorgeous little boy, and huge slobbery kisses from Leon ;)

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  2. Well said Kylie. I disagree with your statement that you have the cleverest, most beautiful little boy in the whole world. You are wrong. I do.

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  3. Lesleyannefreeman4 August 2011 at 13:39

    very moving and honest, I can very much relate xx

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  4. I really do relate to this in many ways . I waited six years to get the help i wanted instead of the pills they were filling me up with and in the end i called the primary care mental health team myself and told them that the drugs dont work they hide everythin to point where i couldd have an emoition which i cant explian but i was in the worst place i have ever been.

    If you want the numbers let me know and i will give them to you. I find out the hard way that the NHS cut you up and take things out and dont want to help piece it back toghter. Alothough i didnt have a baby it was my appendix so no where near the same. but i go off how i felt and what was going on in my head, i really ant understand how hard it must be for you at all but if you need me i am here xxx

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  5. Hi Kylie, If you live anywhere near Wimbledon, try the Counselling Service at Wimbledon Guild. (I use to volunteer there and it is a pretty good service...) You can ask to see a Family Therapist instead of a Counsellor. The Family Therapy service is cheaper - you pay what you can afford! And they don't have a long waiting list.

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  6. That sounds fantastic, unfortunately I live in Manchester

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  7. i can relate to this largely in the depression side of things. for years and years i have (and still am) battling depression and every time i go to my GP its take this pill or this pill. when i was a child i got referred to a psychiatrist whilst taking medication but neither helped but since i became an adult it was always take this pill never lets try talking about this and exploring the options. finally i put my foot down and told them in no uncertain terms that i am not taking any more medication as it does not work and i want something else. the best they could do was give me a sheet to self refer to local counsellors and finally something is starting to work. its private but fortunately the company that i use do a low cost option which has been a lifesaver really. i really hope you can some proper help as talking to my counsellor is really starting to help heal old wounds. x

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  8. Just so honest Kylie. I felt everything you said. The NHS can let us down so bad it's unreal.

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  9. verity stangroom4 August 2011 at 20:29

    Wow, Kylie whast a great post. So heartfelt. Can identify in sooooo many ways. As per one of the comments below- CHANGE YOUR GP. Outrageous- put your foot down. Also- do Bliss offer anything? Having talking therapies myself- you can self refer in my PCT, have you double checked whether you can do that in your region?
    Don't start me on funding for mental health provision...... grrrrrrrrrrrrrrrrr. Fact of the matter is CBT is incredibly cost effective and can impact in a hugely positive way.
    Oh I am sorry you are feeling shitty right now but I hope you see sunshine again soon and get the help you deserve. xxxx

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  10. from V:-

    Wow, Kylie whast a great post. So heartfelt. Can identify in sooooo many ways. As per one of the comments below- CHANGE YOUR GP. Outrageous- put your foot down. Also- do Bliss offer anything? Having talking therapies myself- you can self refer in my PCT, have you double checked whether you can do that in your region?
    Don't start me on funding for mental health provision...... grrrrrrrrrrrrrrrrr. Fact of the matter is CBT is incredibly cost effective and can impact in a hugely positive way.
    Oh I am sorry you are feeling shitty right now but I hope you see sunshine again soon and get the help you deserve. xxxx

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  11. Barbara Hewitt194 August 2011 at 21:50

    Very moving post hun, knnow how you feel about doc, I went with morning headaches and she gave me depression tablets, which I haven't taken. Even though I have 3 sons, I too would like another baby and some may say that's selfish of me; I should appreciate what I've got, which I do, but would dearly love another baby. Joseph is a very lucky boy, to have you as his Mum.
    Sometimes we have to accept things we don't want to, but sometimes there's no choice, no matter how hard that is for us to accept.
    Love to you xx

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  12. Firstly, hello. This is the first time I have read your blog (was recomended by nicki on facebook).
    Secondly, (I probably wont do thirdly because I can feel this response turning to compleate babble already). You Shouldnt feel guilty for using a blog to vent, thats what blogs are for. Sure, once we get a readership, and its constant, and they comment, you do feel inclined to display only the rosier and happier side of your life. When you get upset and need to vent the comments drop, and they decline to speak to you, and only the real loyal readers will try to give solutions or say "hey, I dont know what to say, but if I was there with you now you would have a huge hug from me". I found this out far to harshly when in 2007 my marrige nearly broke down and my blog turned into somne sort of blow by blow record of events. At the end of the day, its your blog, it personal to you, and if a readership dose'nt like whats there they wont read, and thats ok, because when it comes to a readership, quality over quantity everytime.
    On the other stuff. I have never lost a baby, that coluld be truley considered a baby, but I did have a miscarrige, and although your expected to just "chin up and carry on" that does come with an amount of greif and loss. But when I have suffered a depression, that I needed to talk through, was when I had my second child. Sadly two weeks before she was born, my mum passed. I did suffer depression. The Drs and The health visitors wanted to quickly diagnose as PND and ram some happy pills down my throat, but luckily I knew thats not what it was. I knew it was simply greif, and to get through it, I would have to feel it, talk through it, make sense of it. Counciling was not an option for me either, but bloging was, online forums were, and chat rooms also were. Thats how I got through it, thats how I made sense of it, and rambling onto to random strangers on the internet helped me put things to rest.
    Your family is what it is, you could spend forever and a day dreaming on the could haves and would haves of life, but what you have right there right now is whats truley going to make you happy.
    Much Love and Light to you and yours, Sue Myhill x

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  13. I struggle with this, too. I had pre-e and HELLP. It is devastating and the mystery surrounding what causes it only adds to the frustration. I hope you figure out something that can help with the emotional side of things. Your health system is so different that ours here in America. Insurance here would never cover therapy.

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  14. Diaryofapremmymum5 August 2011 at 11:16

    Kylie,
    May I just say I love your tendency to go from somber to sensible, it's what makes you so very human. Plz don't change :-)

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  15. Thank you, as an opimist I can't stay miserable for long! And I am blessed!

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