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Good times, bad times, you know I've had my share.

Posted Apr 09 2013 2:00am

Phew! What a busy week it's been! Well, the boy is now well and truly moved in to ours now. We spent most of last week organising my room then he moved his belongings over on Saturday. We were absolutely done in from it but we're (almost) fully sorted now. Just a few bits and bobs to find homes for and another spring clean of my wardrobe. We also have the boys computer here now and a little desk and it's lovely to be able to sit down and work (or online shop!) properly! But the best thing is that we are actually living together at long last! That makes me very happy!

I had some good news last week - finally, I hear you all gasp! The DWP have now received my appeal and I've had a reduced amount of money from them to cover the appeal time, backdated to when they stopped my Employment and Support allowance. Until I get some sort of decision from them, I'll be receiving £71.00 per week instead of my usual £119.00 - so at least I have some money at last and can pay my bills and prescription costs! It's such a massive faff and it makes me ridiculously angry and sad that this has all happened. However, I read this story over the weekend, of a woman in the same situation as me and her appeal ended up going to a tribunal in court - and she won! So, that's given me hope. It just amazes me that I see so many doctors and surgeons etc and yet the only people who don't believe me are the DWP. GRRRRRR. I need to get off this subject now because I can feel my blood starting to boil!

Pain wise, everything has pretty much been the same as ever. I have a bit of an infection at the moment and I'm not sure really what it is. I've been on some cystitis medication for the last 2 days but they don't seem to have gotten rid of it and it doesn't particularly feel like cystitis either. My kidneys were hurting a bit last week but they've been OK since then. It's just when I go to the toilet and afterwards. It's all a bit odd. But it's not life threatening so if things don't pick up I'll get myself to the doctors. Maybe it's because of my wetting problem and I'm retaining things that I shouldn't be. I don't know - I just no it doesn't feel right. It takes me right back to the start of all my problems, pre-diagnosis and shortly afterwards, when I would get thrush and cystitis on a weekly basis. It was awful and I pray it doesn't get like that again!

I have my hospital appointment next Monday... It's crept around so fast! I'm already beginning to get nervous about it and I'm worrying that the Prof. will want me to go on a hormone treatment again and things won't get sorted. That's the problem with add-back  therapy. I've had it three times now and it's never helped. Things are just as bad when I come off it and to me it just seems like 3 or 6 months of wasted time. I'm tempted to insist surgery again just to see what's happened since January and to find out why nothing has worked. He always objects to surgery because of the scar tissue but at this point it's not going to make any difference to me. I am just desperate to not be put on hormones again. It's hell going through all the side effects and knowing it's all for nothing. I'll write my next update after my appointment so please just wish me luck. I just want him to help me.

As for this week, it's being spent sorting our room still and then on Saturday me and mama are going to a vintage fair and then for lunch. I cannot wait!... I just hope I feel well enough!

Anyway, I've been catching up on the blog all day so I'm going to have a break now and hop in to our big comfy bed and snuggle on down with the boy and Daisy Bella... I would say goodnight, but since you'll be reading this in the morning I'll wish you all a good day!
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