Tuesday, 11 September 2012

Surprise, Surprise....

.... it was the diagnosis we thought it would be in the first place, which was that we wouldn't be able to give you a diagnosis.

Saying that though, everyone at the Clotting Clinic at the UBHT has been fab. They have pushed things on and squeezed us in to get the job done. They've very patiently accepted our phone calls and listened to all of our concerns and we couldn't asked more of them.

In the end, we got the conclusion that everyone had speculated over from the beginning. Yes, Mr Creeps does have some type of bleeding disorder, but no, they don't know what's causing it. It's most likely to either be a version of von Willebrand Disease, or, something similar, but they can give a definite answer. They will recommend that prior to surgery he is given certain medicines that will cover those eventualities, but cannot guarantee their success.

It may sound odd that they can't give a definite answer. Shewhowillnotbenamedunlessshewishestobe said earlier 'But how can blood be inconclusive? It's just blood'. It's a good question, but the truth of it is, blood isn't just blood. It's an amazing substance that from a scientific view they're still learning new and awesome things about as the years go by. Mr Creeps has had just about every test that is available to them at the moment and they still cannot say 'yes, it's definitely 'x'.'. That would put him with 50% of all patients sent to haematology wards with 'unexplained bleeding' in the world. There are some many factors to do with medication, diet, lifestyle - even the air we breathe, that can affect the outcome of these blood tests.

So what is 'just blood'? Blood is the oxygen supply, hydration supply, and food supply to your whole body. It carries, proteins, hormones, and antibodies to all the places they need to go. You can loose up to 3 pints of blood and your body can go on and make more (though you might not be up to much else in that time). They can actually take your blood an give it someone else with the same blood type to help save their lives. Women grow babies by supplying them with their own blood.

On the other hand, blood can be a killer. It can carry Aids, HiV, Hepatitis, and many other diseases. It can have things missing from it so that you can't stop bleeding, or it can't supply your body properly with the right things. It can become diseased itself - carrying cancer to other organs in your body.

Anyway, the haematology guys are writing (don't even get me started on that) to the lovely Mr Saunders with their findings and recommendations. Even though all of the testing may seem as it was done for nothing, actually, it's going to do lot for us. Aside from recommending the medicines, they are also going to recommend an extended time for obs, and that all info is fed back to them. They are also issuing us and our GP with a letter outlining in detail the tests that they have done and stating that anyone needing to do invasive surgery on Mr Creeps had better call them for instructions first. They really are taking us seriously, but can only work in the parameters they have and are not prepared to give guarantees when they are not 100% sure on something.

So, 10 working days to get the letter to Mr Saunders, then hopefully a conversation and we should be able to get re-booked back in again sometime before Christmas.

I had a bit of a wibble later on this morning as the whole weight of everything we have to do became very apparent (I'm normally very good at just not looking at the view). However everything, while still terrifying, will not be improved by me going to pieces, so I have just had to pick myself up by the scruff of the neck and give myself a good talking to and we're okay now.

Tomorrow is another busy day, so I best away to bed. :)

Sunday, 9 September 2012

Running Just To Stand Still....

.... is pretty much what I feel like I spend my time doing at the moment.

The last week has been so busy. Tuesday was taken up with getting Evil Monkey 1 ready for school, getting Mr Creeps to the chiropractor, and my slightly crazy 'new claimant' JSA interview. Apparently, if I was making this claim a year ago I would be on Income Support as, not only to do I have a child under 5, but I am also in no position to look for work as Mr Creeps could be going in for his op at any time. At that point in time I have to sign off from JSA, apply for Carers Allowance for 6 weeks (which I might not get), and then sign back on. The advisers all KNOW that this is insane, but can't be seen to be seen to cutting me any slack, so I have to be seen to be looking for work, even though they know that's unrealistic. It's not their fault, and they admit that it's a hole in the system, but I have to just try and work within the system.

Wednesday was Evil Monkey 1's first day back at school and my first 'signing on' day.

Thursday was Mr Creep's very early next appointment at the Vampire Haematology Clinic. They took another quarter of a pint of his blood, which even  though he's a big bloke, does make him feel a bit special, so we took a very well behaved Evil Monkey 2 to Roccotillo's for a late breakfast. A bit later a family friend, the Silver Surfer, came over to catch up and to play through Lego Star Wars to open up some more of the characters and some more of the bonus levels for Evil Monkey 1. It was a terrible hardship for him.

Friday was just busy. Evil Monkey 2 met one of her new teachers again, which all went very well. She is now looking forward to school even more!

Saturday was the first kids party in a while and was a bit like pulling teeth. Fortunately, there was wine. Which helped.

We ARE doing stuff towards moving, but it's all tied in with everything else, and we're waiting to hear the results of the blood tests on Tuesday. Pffft. There's only so much you can do.

Another busy week this week, especially with Evil Monkey 2 starting school. Not entirely sure I'm ready for this bit....

I should add a big THANK YOU! To Nicola Carpenter, who recently published some of my photos on her blog about graveyards and hauntings called 'Beneath Thy Feet', which has been featured in the Sun's magazine section.

Monday, 3 September 2012

Up From The Depths....

.... I swam this morning. Sleeper meds did their job and I was asleep before midnight, but still only got 7 hours. Meh. Mr Creeps took one too and had to dragged out of bed 20 minutes before we were due to leave.

A really good productive day. Met some really nice people who have helped us look around the town and get some ideas about structure, who's who, possible premises, and any oppositions we might have. Most people have been really positive and are more than happy to help.

We also went to visit the school for the Evil Monkeys and were pleasantly surprised. Even Mr Creeps, who is seriously hard to please with these things, was very positive. They were in the middle of preparing for the new term, so it was just a quick visit. We'll take the kids back down to have a look in a few weeks.

It was a beautiful day, wished we could have been down to the sea, but we ran out of time. It was very noticeable that both of us could breathe properly - highlighted even more so when we got back to my Mum's and realised that Mr Creeps hadn't had his antihistamine today, nor did he need any steroids.

Nice to be home with the kids, but we can't wait to get these plans in action. Nothing really to hold us here anymore.

Sunday, 2 September 2012

Mind The Gap....

I know it's been a while since I last posted, but things have been fairly traumatic and stressful, not to mention busy. Because of all the drama I can't switch my brain off, which means I stop sleeping. Last night I managed 4 hours. I can normally function on 5, but it's not good and the depression kicks in. It's now been 6 nights in a row.

If I told you everything that has been going on you'll be asleep on your keyboard, so I'll give you an overview.

Mr Creeps has finally left work and been signed off by his GP as suffering from depression and fatigue. He's been off for a week, and frankly, the effect has been very positive. He's still very fatigued, but his sense of humour has returned. I've left him to do as he pleases this week, but next week we're back into gear. His new platelet count is Thursday, and after that he can go back to eating all the things he loves.

With both of us out of work I've spent most of this week fighting with BCC, HMRC and DWP. I still have Mr Creeps SSP forms to deal with. Hopefully it should only have to be done once. I thank my lucky stars we have such a FABULOUS accountant. She and her firm, SMA Services Ltd are amazing and I can't thank them enough. Should anyone in the south west be looking an accountant she is one of the best. We luffs her. -.-

Have seen  'Shewhowillnotbenamedunlessshechoosestobe' a couple of times this week, which has been lovely. She has finally taken the last of her stuff out of the spare room so now I can start using it store up the packed boxes. Keep an eye on eBay for some lovely size 8 and 10 clothes and lots of shoes!

So, things I have learned over the last few weeks:

  1. No matter how many lists you write, you will always forget something. Quite often the list.
  2. Not everyone who works for government agencies are total arseholes.
  3. My dog is more of an idiot than I thought.
  4. I seem to be partnered to the lead character from 'Unbreakable'.*
  5. 'Spaced' is a bad thing to have on if you're trying to do something that requires concentration.
  6. As is Facebook, Twitter, Pinterest, The Big Bang Theory, or Come Dine With Me....
  7. Keira Knightly makes me want to throw things at the TV.
  8. No matter what you organise, it will all have to be altered at least three times and ad libbed on the day.
  9. I am too old for this shit.
  10. Apparently, running away screaming is not an option.

Off to Mum & Dad's later and hopefully getting to visit the school tomorrow and go and meet some people in the town. Hopefully, I shall get some sleep tonight so that I don't sound like a drunken monkey. Always a downer on first impressions. 

*Mr Creeps was given a blood test by his GP to just check the rest of him in case there was another reason for the fatigue. He actually had to double check the results belonged to Mr Creeps because it turns out that he has the cholesterol levels of a 20 year old. Not only that, but he has a liver function and kidney function of someone half his age. For those of you who don't know him in real life - this is a man who nearly bled to death a year ago, has been on antibiotics and steroids for nearly two years, and 6 months ago was told if he didn't stop drinking he'd suffer long term consequences. He's apparently healthier than me. I love him and I'm really pleased, but FOR FUCKS SAKE!