The Olympics Summer 2012

Excitement at Lee Valley

It is Tuesday and we are supposed to be attending the men's canoeing final at Lee Valley. The weather forecast is for heavy rain all day and after much consideration and deliberating I have decided it will be too much for me, it was always going to be a challenge for me anyway and the thought of feeling unwell and sitting in pouring rain for a few hours doesn't really seem a sensible thing to be trying to do. We have resorted to plan B, Rob has phoned the helpline to check that the tickets can still be used, we had a wheelchair ticket and carer's ticket as well as two ordinary tickets and he is assured it will be fine to still use the tickets without me. So Rob is off to Lee Valley with Sarah and Rose and Rose's boyfriend, David. I am just so relieved he is still able to go and I know he will probably be able to relax and enjoy himself with the girls and he wont have my needs to constantly be worrying about either.

I thought I may feel frustrated with myself for not managing to go, but I think I am beginning to learn that some things I can do and others are too challenging at the moment and there is no point beating myself up about it, there is nothing to gain in that. Today I am just going to have some quiet me time and I will be watching the canoeing in the comfort of my own home with no anxieties and I will be scrutinising the audience for my family!

When I saw the doctor and nurse at Papworth last week, they gave loads of advice about the skin allergy that I seem to have acquired and I have tried out some new products to see if it helps. Unfortunately I seem to breaking out in redness everywhere and my legs are worse than ever. Funnily enough the only bit that is looking all right is under my dressing on my Hickman Line site! I feel like one big itch at the moment and it flares up badly every time my skin flushes with the Epoprostrenol drugs, which is all the time really. Maybe I should cover myself in Allevyn Thin dressings! I can only put it down to the new treatments I've been trying, so I am now going to have to go to the GP, appointment is booked for after we come back of holiday in the Lakes and in the meantime I'm back to the old Sudocrem and plain water for the bath!

I sometimes feel that coping with PH would be fine, if it wasn't for all the other more niggling little problems that you get associated with having a major illness and taking so many drugs. It is these little things that can make your life feel miserable and can get on top of you.

On Friday we are off to The Lakes for nearly two weeks, coming back just in time for the A level results. Rose and David might come and join us for a few days so that will be really good if they can. I've written a list of some new places I want to see, Lowther Castle and Leighton Hall being two of them. If we get fine weather I would like to visit St Annes where I used to spend holidays as child, it has a lovely flat promenade and I like to go on the pier and take my chances on the penny falls! If we get some good weather we will definitely be taking a picnic to Coniston Water and hopefully Rob can go kayaking. So lots of things I know I will be able to manage more easily to look forward to!