More than just a bag lady

Earlier in the week I had my ketamine infusion at UCLH in London. Hubby and I had originally planned to travel in by train/tube but a friend reminded me that it was 7/7. To get to the hospital I would need to get the Piccadilly to Russell Square which is where one of the bombs went off. To be honest I wasn't too keen on using the tube that day when I realised it was the 10 year anniversary anyway because you never know if there's going to be another nutter with a bomb in a rucksack to mark the event .  So we drove in and I was dropped off outside the hospital entrance while Hubby went and parked the car. Luckily there are a few big hotels nearby that let you park in their car parks for a nominal fee. (We remortgaged the house to pay for it and we had just enough change left over for a coffee!) The ketamine is infused via a drip so once all the preliminarily checks were done we began the usual multiple attempts to get a Cannula in my arm because my veins are soooooo bad. Eventua...

So tonight Hubby and I are going out. And not just out, but out out. I've agonised over what to wear as we are going to a fancy restaurant in Covent Garden and I've piled on so much weight that not much fits. I found a dress with a bit of stretch in it but thought it would look better with control knickers on. I fought my way into them, pulling and yanking at material and poking bits of my belly as it was trying its hardest to escape, falling out of the sides and poking over the top. Oh the joy of being a woman! But after half an hour of wearing them my bowel began to spasm from the tightness and so I ended up making a dash to the loo, so desperate to get them off that I enlisted the help of Hubby to yank at them with me! Finally they lay round my ankles on the bathroom floor and I could breathe again!  The other  issue I'm facing  is the heat.  I've spent most of the day just sprawled on the bed, fan on and hooked up to a bag of fluids trying not to dehydrate. When ...

The health secretary Jeremy Hunt has announced that he will be putting the price on prescription medicines priced over £20. They will also feature the words 'paid for by the UK taxpayer'. Is it a good thing or will it just alienate those that have long term health conditions? Potentially both I think. I think that if people understood the real cost of their medication they would value it more. For example, when I found out how much my morphine patchs cost (over £5000 for a 3 month supply!) I was astonished. It made me appreciate how much the GP surgery, and the NHS overall, was spending to help support me in managing my long term health condition. So maybe if the price was printed on antibiotics for example, people would be more likely to complete the course rather than throw those last few in the bin once they start feeling better.  However, the words 'paid for by the UK taxpayer' to me has a slightly accusatory tone. A  you should be grateful kind of feel to it. And ...

I love summer. I love the sun, wearing sandals instead of Ugg boots and having an excuse to eat ice cream. My body however, does not. When it gets hot I dehydrate easily because my bowel does not absorb fluids well. One of the main jobs of the large bowel is to absorb fluids from your poo and the fact that I don't have one of those anymore (a large bowel I mean, not a poo!) means that my small intestine is trying to do a job it wasn't designed to do.  And that  is the reason I need to have fluids through my Hickman line.  When it gets hot everyone is advised to drink more to stop them from getting dehydrated. But that doesn't work for me. If I drink more, the extra fluids don't get absorbed so they just pass out through my bottom. So I just end up having more trips to the toilet. To keep hydrated I  have to make sure I have all my feeds and sometimes I need to have extra saline fluids aswell to keep me topped up.  The other problem I suffer with in the hear is s...