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It's been a while

It's been a while since I last posted. I've been ok- not back into hospital so that's always good- but very tired. By the time I've fed the kids, done reading, homework, baths, put them to bed etc I'm usually so exhausted that I'm straight to bed myself. Plus the longer you leave it the harder it is because you have so much to write that you can't face doing it. 

I have started to write a catch up post but thought that I would just post a short one tonight about my day. I had an appointment at the local community hospital with the incontinence nurse. I'm still not 100% continent and when I was last in hospital my specialist pouch nurse called my GP to get them to refer me. That was weeks ago and that's how long it has taken to get an appointment. Luckily I have a supply of pads at home to keep me going otherwise it would have cost a small fortune buying tena pads. 

I wasn't sure what to expect from the clinic but I certainly didn't expect to be in and out in 2 minutes. Basically as I'm under St Marks they won't do any treatment but will supply the pads that I need. As I no longer qualify for free prescriptions ( I will come to that shortly) I expected to pay for the pads. But no- they are provided free. I will get a delivery every 12 weeks with my supply. You are limited to 3 pads a day though, the nurse told me. If you need more than that you will have to get them yourself from the shops. I often wonder who comes up with these numbers. Are they based on need or cost? Have they surveyed the users or is it worked out by a suit in an NHS office somewhere?

So while I should have been pleased that I'm now going to get the supplies I need for free it has actually just infuriated me. And I've been stewing all evening. As I said, I no longer qualify for free prescriptions. While I had my Stoma I received all prescription items for free but now that my pouch is on the inside and not a bag on the outside someone, somewhere has decided that I must now pay for my medication. I'm still on exactly the same medication as I was on before (all 10 of them) so you have to wonder what the rationale is?

If I had diabetes then I would get free prescriptions. So if I ate myself into obesity and diabetes then I wouldn't have to pay, but because I've been blessed with this awful condition I'm now going to have to fork out for all my prescriptions. I'm going to have to get a pre-pay certificate where you pay around £110 a year because if I had to pay for each item individually it could be over £80 a month! No wonder you read on some of the online forums that some people on low incomes are having to choose between food and medication. It's an absolute disgrace in this day and age. You'd think we were a third world country. 

I just find the whole system so completely messed up. You have wealthy pensioners receiving medication for free, people receiving incontinence items for free (and goodness knows what else) but people like myself who rely on medication to stay alive and well don't. If I had cancer I would get it free. But I don't. And don't get me wrong, having cancer is terrible and if you have cancer you should get your prescriptions for free but if you have cancer you can get better. The cancer can go away. But people who have a life long condition that will not go away, and may never get better are penalised because it's not the big C. I realise I may raise some eyebrows with what I have just written and I hope I haven't offended anyone but it's just so frustrating having a condition like this that never goes away and having to fight for even the most basic things all the tine, like a blue badge. 

 Anyway, I shall get off my soap box and look at some of the positives in my life right now. Although the kids are wearing me out, it is fab to be at home with them, doing all those things. I've missed out on so much this last year and tonight I was listening to Big Fella reading thinking 'wow- you've really come on these last few months' and just enjoing the 10 minutes snuggled up with him. I painted Big Girls nails at the weekend and it's such a small, simple thing but I am home to do it and that's brill. I've actually been at home for the longest length of time since last June. I keep waking up, expecting to be ill and needing to go back in but so far it hasn't happened. I go to see the gastro team at St. Marks on. Thursday so will be talking to them about my Hickman line and the plan moving forward. I'm still needing 2 litres of fluid every 2 days which is double what I was having in hospital but I think that as I'm more active at home and the weather is warmer my body needs that extra fluid. 

So there you go. Not quite as short as I thought it would be but I'm glad I've written again as I think not blogging means that everything stays in my head going around and around, slowly driving me a bit mad. I shall try to finish my catch up post and then get back on track with more regular, but probably not daily, blog posts. 

NB x



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