A week of ups and downs

Mark loves his new car, but getting used to driving it hasn't been quite as straight forward as he thought it would. Getting in and out is still a major task, but is getting a bit smoother, even with the bigger doors it's still a struggle sometimes to get his long legs in. Other than the fact that I'm a nervous wreck beside him, it's odd because it feels such a normal thing to be driving around, I almost forget he's not going to just jump out when we get to where we're going. I'm also having to get faster at getting chair taken apart and into the boot or I get rather wet!!

Since getting the car our days have disappeared at a rapid rate. We've spent as much time as possible out house hunting, which when considering what is needed with a wheelchair makes the whole job more difficult. It's amazing how differently you have to look at every property. So far we've just looked from the outside, the photography skills of the estate agents has improved and what we see when we get there is often VERY different from the photo online. We have found a couple but have to work out how we'll get Mark into them to look around and rely on some hard bargaining to get the price down to our budget.

Mark has had his first journey out on his own. I packed him into the car at our end, he went over to his friends workshop and they had to get him out there. It was worrying, it's like letting your small child out on their own for the first time, knowing they'll forget things like take their drugs because they're all giddy about being out, but you know you have to do it.

We've also been over to Cyclone at Hull again to get more bits for his wheelchair. As soon as Mark got the car we found his wheelchair wouldn't go in the boot, it will go on the back seat but what a struggle it is to get it in there and he'll never be able to do that on his own. So, Stuart leant him a different chair and he took bits off his hospital chair to build something else. He then decided the wheels from his hospital chair wouldn't do the job and the back wasn't working properly so now we have new wheels and a new back. While we were there Mark had to get out of his chair so they could put the new wheels on, so he transferred onto a sofa under the watchful eye of another wheelchair user, not only that but he did it without his slide board, both firsts, a bit scary but another experience. He now has a 'discussion' going on with Wheelchair Services because the chair they were to supply is very similar to his hospital chair, and that won't fit in the boot either. So, he's trying to negotiate to get just the back and the seat, but they're not happy about that even though his chair hasn't been built yet. That 'discussion' will be ongoing for the next week or so. My money is on Mark.

Friends fill in as wheelchair mechanics under Marks direction and it's slowly coming together. Getting a chair to fit properly is really important and it's a time consuming job. Every time something is changed it feels weird for a while and takes time to decide if it's more comfortable or not. This could go on for some time yet.

Six week check up

Can you believe it, Mark has been home six weeks, just don't know where the time has gone. We set off early Thursday morning for his six week checkup at Pinderfields. He had a long list of things to tell the Consultant, particularly the problems with spasms and continuing pain. He had hopes they would have some answers, I have little faith in anything they say now. Mark spent time describing the spasms and pain in detail giving them as much information as possible to allow them to work out what could be the problem. Consultants answer - we have no idea why your spasms and pain are getting worse, all we can suggest is take more drugs. I suppose because I had little faith that they would actually have any answers I wasn't that surprised. Mark was frustrated, but I think also not that surprised. They have booked him in for another CT scan but are not expecting it to show anything new. So now his drug count has increased and could increase considerably before we see any, or no, results. I have explained to the Consultant, that Mark has to go back out to work and he can't in his current state so we have a problem - not sure the Consultant is taking me seriously enough, he still hasn't tuned into my sense of humour.

We had a mammoth (as in big not the animal) curry lunch with Deb and Jez (friends from Lefkas) on Tuesday, it was great to catch up even though we couldn't actually go out with them. After lunch we went for a walk down through the woods and Jez did his best to catapult Mark out of his chair on the rough ground. I'm sure Mark was heavier after that huge lunch, pushing him back up the hill took the efforts of Deb and I together!! If we don't get back to Lefkas it will be a year before we see them again, life will have changed considerably by then.

Much time is now spent trawling the internet for houses, the criteria is a lot different than if we were looking as 2 able bodied. Considering access to the property, turning space and room sizes needed for wheelchair space rules out many in our budget, the search includes all sorts of buildings that could be made a home, any ideas from you lot out there welcome!!

Mark finally mobile

Mark has been searching for a 2 door car with as small a budget as possible and Friday he finally got one. Next step - send him out to work!!!

Only JOKING for those of you ready to report me for cruelty to the disabled.

Real next step is trying to find somewhere to live. I've spend days out looking at houses in our budget range but finding something that will be suitable for Mark and wheelchair is not going to be a quick job, so if anyone knows of anything suitable for us let me know, all suggestions welcome.

Mark is still struggling a lot with spasms, some days they are still quite debilitating and painful. His consultant was convinced he would improve when he got home but that definitely hasn't happened so we look forward to what they have to say when we go back this week for his 6 week checkup. It will be difficult to get them to appreciate he has actually gone backwards since he came home in respect of spasms and pain.

It hasn't been all bad though, he's much fitter in general from using the exercise bike, his arms and hands have got stronger and he is able to do more with his hands week on week. Yesterday he was down in the workshop with a friend teaching him how to port an engine head, he had a go himself and was able to do it for a while and to a better standard than the person he was teaching, that was good for his ego - hence I think it's time he went back out to work!!

Some days it's not so easy

Dealing with the physical side of paralysis, with it's ups and downs, good days and bad, it's improvements and setbacks, the sheer frustration of coming to terms with the limitations now imposed on your life, learning how to understand your body again with its constant changes and the fears that there might not be any further developments is just one part of our new lives.

Dealing with the emotional is quite another. Grief is the best description of what we're going through and the grieving process can take it's toll. The sudden urge to scream at the world for the injustice surfaces without warning. Tears are often just a look away. For a split second we can wake and forget our previous life has gone forever, we don't know what normal is any more. When a conversation takes your mind back to the life you had, a sadness washes over you with such violence it stops your thoughts so completely you can't seem to jump over it and finish your sentence. It can be quite debilitating.

Each day we try and just face the day ahead as best we can, there's no other way forward, we make plans for the future but some days I don't want to make plans for a different life, I want my old life back. Mark wants his old life back. I'm finding that some days I have to give into these feelings because keeping them locked down is too hard, I'm not so tough after all it seems.

We've had a constant string of people traipsing in and out of the house over the last 10 days, most of them scratch their head, and say 'oh dear that's a problem we need to do something about that', then not see them again. One such instance was Marks mattress, the design was like an egg box on the top and consequently made egg-box indentations all over Marks back, not good. Everyone was panicking that it would cause a pressure sore if it wasn't sorted out quickly but not actually doing anything about it. Eventually 10 days later we had a visit from a mattress manufacturer who made a suggestion and actually carried it out next day - result - now he has a new mattress and no more marks.

We've also had lots of people saying that the swelling in his legs is a problem and needed sorting out, 2 days ago he got measured up for his new stockings. They'll take another week to come so that process has only taken 3 weeks!!

One good experience and we have to give credit to any good practise we come across, we went back to Airedale (where Mark was in ICU) to get him measured up for his new wheelchair. They had 2 Physio's and someone from the manufacturer and they were all good. We were there for nearly 2 hours and they took their time to go through everything thoroughly - a nice change. In 8 weeks time Mark will have his new racing green wheelchair. No doubt he'll be tuning that one as soon as he gets it as well.

After being measured up we went along to ICU to say hello to some of the staff that looked after Mark, if was quite amusing, we waited in the corridor after asking for a particular nurse and they recognised me but not Mark he looks sooooo different from when he left there. I think he was a bit miffed but it just shows how much he's become his normal looking self again after so long.

I said a while ago I would put a piccie up of Mark on his exercise bike, well here he is ...