about

dark sky, looking west

my eleven-year old daughter was diagnosed with functional abdominal pain in January 2013. this is a blog about that, and about being the parent of a child who was disabled by chronic pain for four months and is now recovering.* everyone is different. my daughter has coeliac disease and hypermobility. i do not know whether these influence her experience of pain. on a huge learning curve with this. didn’t see it coming, can’t believe this is where we are. no idea when/if her pain will resolve. if you want to start this blog from the beginning, you need to start here: diagnosis

i’m a writer, not a doctor, and none of what i write in this blog constitutes medical advice.

if you are unwell, or concerned about the health of another, please consult an expert.

i wish you well.

https://twitter.com/abomadom

@abomadom

NHS Direct Symptom Checker: Pain:
http://www.nhsdirect.nhs.uk/checksymptoms/topics/pains

Stomach ache and abdominal pain:
http://www.nhs.uk/conditions/stomach-ache-abdominal-pain/Pages/Introduction.aspx

Medically unexplained symptoms:
http://www.nhs.uk/conditions/medically-unexplained-symptoms/Pages/Somatisation.aspx

Cognitive Behavioural Therapy:
http://www.nhs.uk/conditions/cognitive-behavioural-therapy/Pages/Introduction.aspx

Pain management services (NHS):
http://www.nhs.uk/livewell/pain/pages/longtermpain.aspx

Coeliac disease:
 http://www.nhs.uk/conditions/coeliac-disease/Pages/Introduction.aspx

Appendicitis:
http://www.nhs.uk/conditions/appendicitis/pages/introduction.aspx

Constipation:
http://www.nhs.uk/conditions/constipation/pages/introduction.aspx

Irritable Bowel Syndrome:
http://www.nhs.uk/conditions/irritable-bowel-syndrome/pages/introduction.aspx

Crohn’s Disease:
http://www.nhs.uk/conditions/crohns-disease/pages/introduction.aspx

Ulcerative Colitis:
http://www.nhs.uk/conditions/ulcerative-colitis/Pages/Introduction.aspx

Bowel cancer:
http://www.nhs.uk/conditions/cancer-of-the-colon-rectum-or-bowel/Pages/Introduction.aspx

 

* ‘recovery’ is a tricky word. my daughter was prescribed Gabapentin in late May and she is now substantially pain-free.


9 Comments on “about”

  1. Connie says:

    I feel like I am you, or you are me. My 12 year-old has been in constant pain since January 7. I will never forget that day. Our lives are changed and I do not know if it will ever be the same. Feel free to email me, if you wish. I have been looking for a parent’s support group, to no avail. I wish your daughter the best.

    • i am so very sorry to hear about your child, Connie. i decided to write this blog because i needed to document what i feel and what is happening to my family. i too couldn’t find anything written from a parent’s point of view. i’ve also just set up a twitter page – https://twitter.com/abomadom – & there are lots of useful contacts there. all best wishes too.

  2. Hi, my name is Fergus and I’m writing to you in the capacity of voluntary publicity officer for Pain Concern, an Edinburgh based national charity and support network for people suffering pain and for those who care for them. I’m also a writer and strategist researching the use of digital media in creating support networks, raising awareness and providing resources.

    I’ve been reading through your moving blog, the trials of living with a child in chronic pain, the sincerity and care with which you try to meet those challenges, and I hope it isn’t too forward of me to ask whether you have come across Pain Concern, our help-line or monthly radio show ‘Airing Pain’?

    I ask because we have a Personal Stories page on our website which we hope will become a resource for those who feel that they are suffering alone. We are also approached by journalists and the media for ‘media volunteers’ who would be willing to be contacted in order to share their stories in relevant articles.

    If you would be interested in contributing in either of these capacities I can be reached at media@painconcern.org.uk.

    Many thanks for your time in reading this,

    Fergus Harlow

  3. thanks, Fergus – i’ll contact you via email shortly.

  4. and have added Pain Concern http://painconcern.org.uk/ to my list of links!

  5. Jill says:

    My daughter came home on Oct 13th in pain, and has not been pain free since. She had 5 weeks off scholl, and is now just about managing a part time time table, although on many occasions I have had to email in to say ‘ my daughter is in too much pain this morning…….’

    As I read your blog, it could so easily be my daughter, even down to the hypermobilty and the orthodontists!
    She has just been prescribed amitriptyline, so let’s see how that goes…..

  6. Jill says:

    Also following gluten free and dairy free diet, although not diagnosed as coeliac!

    • guinglasfurd says:

      sorry for my late reply. it’s such a wretched thing for your daughter to go through but she will come through it. It’s hard not to be stressed about it in the here and now, but you will look back on this in a year or so and think ‘oh my goodness, what was all that about!’. I think it’s great that you’ve got a part-time school timetable in place – it’s important to keep the link between home and school. My daughter used facetime on an ipad with her school so that she could join in form (and had some home-schooling too) – looking back, it was very little, but it gave her such a boost, and helped keep some element of routine going. we had to push her as well, and that was tough, even though it caused her pain – just gently, little by little. There are a series of posts on this blog on how we used a photography project to get her up and on her feet and outdoors again. First just to go outside, then a little way down the street, each day a little bit further. It makes me well up remembering it, how hard it was for her, the pain it caused her, but she did it. There’s no denying the sheer wretchedness of this, and it can be hard to be reassured that there’s ‘nothing wrong’ when your child is in so much pain. My daughter was seen by a paediatric rheumatologist for a while re her hypermobility, and we were told that hypermobile children can feel pain more, and then that pain can become entrenched when there’s no injury or underlying problem to cause it. I don’t know. I’m not a specialist. All we have is our experience. My daughter had a terrible few months, incapacitated at times by pain. She’s on the other side of it, and one day your daughter will be too. Hope this helps. x

  7. Toni says:

    Hi there,

    Yours was one of the first blogs I followed when I started blogging. Your writing style is lovely to read, but more than that, I have no doubt that telling your story so honestly and openly has, and will continue, to help readers in the same situation. I nominated you for the Real Neat Blog Award and hope you accept.
    https://painpositive.wordpress.com/2015/05/20/yay-the-real-neat-blog-award/
    Best wishes, Toni


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