Oh what a night!

Dinner just about cooked, Yorkshire puds not quite cooked, Mark with bed adjusted to get back in his chair - power went out!! Pitch black it was. Oh dear. Found torch and decided Mark was safer in bed for now, but what about dinner???? It's only the second time I've made REAL Yorkshire puds and now they won't cook properly - bugger! Do we chance it and hope the power comes back on in the next few mins or dish up and eat in the dark. Well it didn't come back on so torch in kitchen, dish up what's edible. So Mark is sitting on his bed, I'm sitting in his wheelchair beside him and we eat and chuckle by torchlight. Romantic??

Even though it's the middle of winter I've still got a few windows open a bit to let fresh air through, so we closed all those to keep whatever heat is in the cottage in for as long as possible, it's going to be a VERY cold night if the power doesn't come back on. We've also got the problem that Mark's bed is in the sitting up position, but we won't worry about that just yet. We get him up and John and Janet come round and we do the most sensible thing we can - we open a bottle of wine of course!

A couple of hours later, we decide we have to make the decision that I'll have to take part of Marks bed to bits so it will go flat the power comes back on. So we get ourselves organised just in case it goes off again and as we're becoming complacent thinking it's staying on - off it goes again. Oooops, will have to take the bed apart after all, this fills Mark with some trepidation, me let loose taking things apart hahaha.

This time it was only off for about an hour, when it came back on it stayed on and it was just as well. About 1.30am Mark had another dysreflexia attack, panic catheter change, bedding change, washing Mark and I was saying a little thankyou to the lecy fairies that I wasn't having to deal with that in the dark. You can just see it can't you, Maureen running round with just a couple of small tea lights around the bed and a torch, Mark barking orders, me not being able to find things fast enough - oh the chaos. What a night!!

First Christmas

Early on when Mark was in Pinders we had a visit from a guy that was the resident SIA (Spinal Injuries Association) peer support. I don't remember much of what was said during that first encounter other than that it would take us two years before we felt like we were finally moving on with our lives. That shocked me. Left me stunned while I tried to digest it. Two years!! He then went on to tell us that the coming year would be firsts of everything, first birthdays, first Christmas etc etc. Then the second year its the first anniversary of the first birthday, first Christmas etc etc.

The concept just wouldn't sink in. Thinking about that today its suddenly becoming a reality as we look back on our first Christmas. Christmas morning was peaceful, just the two of us opening our pressies. Dinner was enjoyed with our friends Dave and Chris, but it wasn't without its drama. Dinner was literally just on the table with Mark had a dysreflexia attack. As dinner slowly cooled we had to change yet another blocked catheter. Am convinced now that his catheters know when food is involved as it happens sooo often just before we eat or just after we eat!!! So the concept of two years before we're really moving on is beginning to sink in. In three months time it will be the first anniversary of Marks accident - where did the last nine months go! While we've been stuck in this limbo everyone is getting on with their lives. As we spend days at a time closeted together and not really doing very much because Mark is just not up to it, I feel lonely, invisible, non existent. I want to scream "WHERE HAS OUR LIFE GONE". Amazingly we get through each day doing the best we can, but it isn't easy for either of us.

REEEESULT!!!

We've finally worn down Marks consultant and he's agreed to refer Mark to a neuro surgeon at Leeds - it's taken months but we've finally got there. We went to Pinderfields today for Mark to have a blood test to make sure the dye they're going to inject into him when he has his MRI won't affect his kidneys. While we were there we asked to see the consultant, hoping he wouldn't be too busy. We were in luck he was free, I bet he was wishing he hadn't been though. He finally admitted that Mark was a mystery to him but understood there was obviously something not right in his back but just didn't have any more answers. Hopefully this is the first step to getting him right. That hasn't taken much effort has it!!

We went to Wheelchair Services on Monday, you'll remember weeks ago - at least 6 weeks ago Mark tried to cancel his wheelchair because he realised it was almost impossible to get it in the car. They told him it was almost ready so he couldn't cancel it. Then two weeks later told him it wasn't all ready still bits to come - still couldn't cancel it though. Anyway we bowl up pick it up on Monday and it was put together with so much camber on the wheels (wheels on an angle like the sports chairs)it wouldn't have gone through ANY doorways. Wheelchair mechanic sheepishly put that right and we got Mark in it. Almost as soon as he sat in it his body went into serious spasms and his arms starting tingling. After spending sooooo long measuring him up and discussing what was needed - how could they have got it so wrong. Well we came away with the new cushion on his borrowed wheelchair and they've gone back to the drawing board. Still can't cancel it though!!

Dealing with halfwits drains the life out of me

To deal with officialdom in this country you need nerves of steel, the patience of Job and the ability to decipher idiot speak ......

We've bought a house!! Well we've had our offer accepted on a house. It's more money than we've got but we found out we could get a mortgage even though our only income at the moment is benefits. It's only a small mortgage so it's low risk compared to the value of the house. Anyway here comes the first example of idiot speak... Initial conversation with mortgage advisor at Halifax (we were told Halifax were one of the Building Societies that do mortgages for people on benefits), she wanted lots of info which you expect, then she asked me for the dates of when we last worked and when our benefits started, fair enough, but I didn't know that off the top of my head so I got all the rest of the questions she needed answers to and said I would get it all together and speak in a couple of days. Next conversation, we get to the question regarding the dates between us last working and when our benefits started. Keep up now........ So who are you employed by she asks - silence at my end, am processing this stupid question!!!! We're not employed, my husband is disabled and I'm his full time carer I answer (exactly as I told her last conversation). Oh I'm really sorry but we can't process a mortgage application unless you're a tax payer. SILENT SCREAM

This morning I ring the local OT (Occupational Therapy) department to find out how we go about getting a grant for ramps onto the house and having a wet room installed. First question from her, have you already bought the house, my answer, we've had our offer accepted. Her next statement, you shouldn't have bought a house that's 'unsuitable' you should have come to us first - silence at my end while I process this STUPID STATEMENT. Very carefully I explain we've bought a bungalow with only ONE step into it and only needed small changes to an existing en-suite to make it into a wetroom. How more suitable a house could we have possibly bought!!!!

You'll remember the battle we're having to get someone to take Mark seriously that something is wrong - little by little he's spending less time out of bed and feeling more and more poorly. His consultant ordered an urgent MRI two weeks ago, the other day we finally got a date - Dec 30th. Alongside this there is a campaign under way now to keep Pinderfields Spinal Unit open - it's one thing being disabled but dealing with 'the system' needs a strong constitution.

Visitors and disasters

It's been a very mad 10 days since last blog. Saturday 26th Kev and Linda and we arranged to go out for a meal, a pretty ordinary thing to do so why couldn't it just be a straight forward evening out??? We picked Kev and Linda up from their hotel and took them out to Skipton for a meal, so far so good. Nigel and Cath joined us and we had a great curry. As soon as we'd finished Mark said he needed to go outside, he wasn't feeling brilliant. Nigel took him out but he as soon back saying Mark REALLY didn't feel well would I go out. When I got out Marks blood pressure was going up and down and he thought it was because his catheter might be blocked, he wanted to get home and get it out. I probably shouldn't be admitting to this but I had had a pint by then and really shouldn't have been driving but we bundled him in the car, abandoned Kev and Linda in the resturant with Nigel and Cath and set off home at high speed. Fifteen minutes later we're home, abandoned car in middle of car park, got Mark out and into bed by which time his blood pressure is going through the roof and he's starting to loose his grip on reality. We tried to unblock the catheter with a syringe but it was not to be. We had to cut it - he peed like a hose pipe - EVERYWHERE!!! The relief on Marks face was palpable but honestly I could cry at the times I'd had to clean up after these sessions now. So that was the end of that night out. Found out next day Kev and Linda got kidnapped by Nigel and Cath and at least enjoyed the rest of their evening. Sometimes feels we'll never get a life back.

Through the previous week my friend Karen (Stu her husband is in a chair) suggested we come up and stay again. Problem is Mark can't get himself from a lying to a sitting position on his own without the aid of his hospital bed and I'm not strong enough to get him up so she said Stu should come down and start Marks boot camp. They came last Sunday (27th). Well Stu has taught him the method but unfortunately Mark hasn't been well enough since then to keep practising it. The infuriating thing is, if he had had his full share of rehab and had not been thrown out so soon, these are the things he would be learning.

Monday and Mark was on the phone AGAIN to his consultant. In addition to the problems with the catheter blocking, the sensation and motor function is getting worse in this hands, a sure sign there is a problem with this syrinx in his back. His consultant has ordered and urgent MRI now - who knows how long that will take! He and Mike went over to Pinderfields to get more catheters and he also visited one of guys that was in his ward who lives not far from the hospital, he has carers morning and evening. Some how a gear clicked into place in Marks head and he's decided to have carers come some evenings now and put him to bed - needless to say I am delighted, if we didn't make some changes I would be dead.

Mike has been here all week helping with Mark, he's an absolute star, he'll do anything for his Dad, all with good humour and total competence. Am soooo thankful for such a fantastic son - Mike we LOVE you x. Eve came Thursday evening and Friday I took them to the airport and that's them gone now for the winter season. They were really excited about their jobs for the ski season. Hope they have a brilliant time.

As you all know we've been frantically house hunting and have two on the short list. Only one of them is a real contender according to Mark. We found out about it through friends. So the owners were good enough to come over to us to discuss a possible sale, because I wouldn't have been able to get Mark into the house on my own. As usual it's not straight forward as making an offer through an agency as the house is not actually on the market. In addition we don't ACTUALLY have enough money (until the boat sells) but are hoping to come to some arrangement with them because they're not in a straight forward situation either. Anyway, that went as well as can be expected and we hope to hear next week if we've got a house or not. Then all change again!

Lunchtime and I've got lovely homemade soup dished up and after a couple of mouthfuls Mark went funny again. Another dysreflexia attack but this time is came on so fast. Blood pressure through the roof AGAIN. This time we put it down to catheter straight away and cut another one up - pee everywhere again :-( Am really concerned that one of these attacks is going to get out of hand and he won't be able to function through it - we'll REALLY be in trouble then.

Poor Mark, he's fed up with feeling ill all the time and today he's been in constant pain, he so much just wants to get on with his life now.