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.
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