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The HPTH UK Forum - March 2006

In HPTH Asssociation newsletter  March 2006

The HPTH UK Forum
Liz Glenister


Hi, from all of us in the UK!

First of all, we owe gratitude to: Jim for providing the funding to help the UK group continue; to everyone who gives so much time to the forum, especially Judith, our unflagging new moderators Jan and Tusti, and all our regular contributors; to Ivor who surprised us with his gift of a brand new website design and for his continuing maintenance; and to Christine, for the kind gift of a new logo.

I want to draw your attention to the benefits of being part of a group of people with whom you can share your experiencesand, like the Walrus and the Carpenter in Alice’s Looking Glass ‘talk of many things,’ and not inconsequential nonsense like

‘shoes, ships, and sealing wax’.
And ‘cabbages and kings’

but the important stuff of life, trying to make sense of the puzzle that is Hypoparathyroidism. This is something we have to do continually, many of us on a daily basis and sometimes it all gets too much. Jim’s quote in the last newsletter from Churchill, about never giving up, is very apt here but Churchill had two other famous quotes I like as well – the first one applies itself to HPTH perfectly: ‘ It is a riddle wrapped in a mystery inside an enigma.’

So, in an attempt to unravel this mystery which holds us all in its grasp, we discuss issues, such as the effects of other factors on calcium levels, increasing and decreasing medication, ingredients of calcium tablets, teeth, educating your doctor, seizures, acupuncture, low vitamin D, post surgical problems, Forteo ( especially with the excitement of the upcoming conference) and how to help children with HPTH. The subject most frequently and deeply addressed on our forum is how to recognize the symptoms of high and low calcium, relate these to blood test results, how to learn to listen to your body and thus manage your HPTH yourself. It’s not something we can learn to do easily or quickly and nor is there much information available about how to do it but with everybody’s input we are slowly putting together a useful document.

We’re all in this together and learning to live with HPTH is something we all have to do –and need to do in order to manage the condition and carry on. Having a place to go where we can be ourselves, be recognized, be heard, where we can admit to feeling despair one day or express the simple unexpected joy of waking up feeling clearheaded the next, and where we can learn all this tricky stuff together, is invaluable. And there are so many interesting people! Whether you use the UK forum, the US forum, the Icelandic and Norwegian forums or the yahoo groups, you’re helping to create a special place.

Now our forum is busy because what many people with HPTH want is to talk to other people with HPTH! Not only can that be hugely comforting (who else can understand exactly how my zombie head/dead hands/screaming muscles feel like!!) but it’s educational as well. Perhaps somebody else has researched a useful piece of advice about diet that really  helps when your calcium is low. However long you’ve had HPTH there’s always something new to learn. For newcomers too, a forum provides instant relief - who among you doesn’t remember the overwhelming emotion of first finding Jim’s site and realizing that you were no longer alone?

A forum is also a two way process because, as well as learning about HPTH from the experience of others, you can offer something too – one day you recognize that you’ve experienced exactly the same thing as someone else and while you may not have any answers, you can really sympathize and offer support. To have a hand offered out to us in understanding can sometimes be the thing we need to carry on. And clearly, people want, more than anything else, to be able to carry on. This need runs  through every topic on the forum. People will push themselves to their absolute limits, hide considerable pain and difficulties, develop ingenious ways of coping just in order to carry on, and carry on, and carry on.

This is partly because having an ‘invisible illness’ means that we are expected to carry on. It’s partly because we sometimes feel we are unable to admit our problems to others because they might less of us, or because we can’t face explaining it all yet again. Wouldn’t it be nice if it had a shorter, more pronounceable name? Or to ourselves because it doesn’t fit with our view of ourselves and accepting that we have a permanent condition requires a huge re-adjustment (I don’t need to change anything in my life because this isn’t really happening to me).

Whatever the reasons that keep us going I think it’s mostly because there are just some amazingly stoical and truly wonderful people out there, who don’t give up and who do carry on - every day. Yes, I’m talking to you! I didn’t live through a war and I wouldn’t dare to make a comparison but I think we sometimes have to develop a wartime–like attitude to the state of siege we find ourselves in and look forward to a time when things will improve.

The second quote I mentioned is a little motto I often mutter and it sums up very well our need to carry on in the face of difficulty, day in day out. It always makes me laugh, which is an added bonus. Churchill used to refer to it as K.B.O.

Keep Buggering On

Hugs to you all

March 2006

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