Friday, 19 June 2015

Pack up your troubles

It's been a while. We have been rather busy..... 

Four kids, three schools and the end of the school year does not a peaceful time make! I barely seem to catch my breath from one day to the next right now, and my eyes are firmly glued to the prize that is two weeks time, when three of my brood will finish for the holidays. Managing the end of term for one is an absolute breeze - except perhaps when you enjoy the holidays a little too much and forget that one child still needs to leave the house by 8am. Easily done!!

I wrote recently about the difficulties faced by families coping with an array of symptoms- often invisible but nonetheless debilitating, but to which no health professional appears willing to attach a name. That was our reality. The day-to-day self-justification, scrutiny and lack of coordinated care.

Until now.

This week, our label - our confirmation, passport and vindication, our acknowledgement, acceptance, understanding and formal diagnosis dropped on my doormat. 

The letter was not long, but I could not take my eyes off four key words. 

Unable to read, let alone process anything beyond this, I sat for some time just staring. Because not only did we now have a diagnosis, but something truly significant had occurred. Members of the medical profession had actually got off the fence, carefully considered all the information available, and made a decision. That in itself is pretty phenomenal, but that decision - in one single action - removes so much frustration, despair and confusion. 

So what does this mean? 

It means, I don't feel I need to explain that my son feels sick most mornings, and suffers frequent headaches. Instead, we can move on to how to help him feel better. I no longer have to justify pre-emptive care to ensure my youngest son and daughter can continue to join in as much as possible in school, not overdoing things one day only to wipe themselves out for a week. Now instead we can now help them pace themselves carefully. It means basic monitoring will hopefully limit future pain, that my children won't need to learn at age 40 that things they took for granted will be taken away from them. And it means that I am vindicated. Because sticking your neck out for something you believe can be extremely difficult, despite support in high places. Our local hospital has vehemently resisted the verdict from GOSH for two years, making me feel helpless, and marginalised.

You see, having a diagnosis can be the most positive step forward. It's like gaining a suitcase, a suitcase large enough to hold everything you have been juggling, managing and coping with, that you can pack it all in to. And the very fact that it fits so neatly seems to make those burdens lighter, the cumulative whole being less than the individual parts combined.

Because, after all, you can go places with a suitcase.


  1. I remember getting my own diagnosis in some ways it is such a relief as you know what you are fighting - good luck. x

  2. It's never easy to hear something like this, because, let's face it, all we ever really want as parents, is for everything to be ok. But, it is always easier to fight when you know your enemy. Good luck with the future, I hope you get all the support you need. xxx

  3. I am glad you finally know what the health problem is now so you can deal with it better. I hope you can now find some medical support to help you.

  4. I am glad you have a diagnosis and hope you can find the help and support you all need

  5. Daft though it seems, I'm sure having a diagnosis will really help.

  6. That's amazing news for you - you must feel like a massive weight has lifted x x

  7. Even though it sounds tough, you must actually feel relieved having the diagnosis - hope you can now deal with everything much easier x

  8. I can't believe your local hospital went against the findings of GOSH. At least now you can move forward and know what you are trying to deal with.

  9. It has been such a long journey so far, but I am glad that a diagnosis means feeling you can look ahead and start with something definitive in place. That can only be a good thing.

  10. What great out look , now you can go places x

  11. It must be such a relief to get a diagnosis. If you don't already you might find Jenny's blog useful to follow x

  12. That is brilliant, great news that you now have something to be able to use to get help and awareness, it must be such a relief.


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