Slightly better today

Marks temperature is back to normal, the swelling has gone down a little, but the nausea is still bad enough to be taking something for it 3 times a day.

He got up for a few hours today and went to OT then listened to a talk from Karen Darke - http://karendarke.com/bio - an amazing women who has done some crazy things since becoming paralyzed at 21 and is training for the 2012 Olympics.

As soon as he was back to bed he was dozing almost immediately. He did eat today so that's a sign he's slowly on the mend. It will take another few days yet until he starts to feel himself again. One of his Physios has just submitted her last paper for her training and has used Mark as her case study - he is only referred to as Mr X, but fame is fame under any name!

Side affects of TWOCing

Mark has Orchitis. Another painful problem he's likely to have more than once. Another of the problems he has to cope with due to his paralysis. Orchitis is an infection, caused in Marks case from the constant use of catheters. What has that got to do with TWOCing?? TWOC - try with out catheter - is the process of attempting to train the bladder to behave normally, however during that process until the bladder learns to empty itself, it has to be emptied via a catheter. That's what has caused the Orchitis. It's being treated with large doses of antibiotics delivered intravenously, which meant another Cannula in his hand, which is a painful process in itself.

Today his temperature has come down to near normal which means the antibiotics are starting to win the battle. The muscle spasms have calmed down so the pain in his shoulders has eased. The swelling in his testicles hasn't started to reduce yet but hopefully as the antibiotics do their job they will begin to go back to normal. He'll be in bed for another couple of days to give his body time to recover. Our Case Conference was cancelled and rebooked for next week.

These setbacks are frustrating and depressing for him so trying to keep his spirits up is our main challenge.

Marks body revolts

They've decided Mark has a bladder infection which has spread to the tubes of his testicles. Thank god the poor guy can't feel anything because he would be in excruciating pain. Because his body can't feel the normal pain, it manifests itself in other ways which for Mark seems to be shivering and muscle spasms. His body has been in spasms all day which has resulted in his neck and shoulders being in lots of pain. He's had a temperature and felt nauseous all day. This morning he was given something to take away the nauseousness but when he asked for another this evening, he was told there was no record of what he had so they couldn't give him another. Yet again another example of lack of communication between Doctors and Nurses, it's sooooo frustrating. He also mentioned this evening that last Friday his Consultant said he should be on Vitamin tablets, but his nurses know nothing about it because it's not documented - it's enough to make you scream! He's also had his limit of pain killers today so is worried about how he's going to get through the night. On top of all that, he's not eaten all day which is not good for him.

We were supposed to have a Case Conference tomorrow, which includes us, Consultant, Doctor, Nurses, OT, Physio and Liasion Officer, however it's unlikely to go ahead unless Mark is feeling a whole lot better. On top of feeling really poorly, Mark is frustrated that's his rehab is being interrupted. Here's hoping he's feeling a lot better tomorrow once the new antibiotics kick in.

Still feeling poorly

Poor Mark, it's day four of feeling poorly. Last Friday a few people were poorly after eating a Prawn sandwich and they first thought that might be affecting Mark as well, however that's four days ago. Now they don't really know what's wrong with him but it's obviously more serious than they first thought as it's not responding to antibiotic tablets. They sent him for a Kidney scan yesterday and thankfully it was clear. They're still waiting for blood test results. This morning one of the Nurses discovered one of his testicles was swollen and have started him in IV Antibiotics. They're now waiting for the Doctor to examine him as well.

Being poorly again is really a downer for him, when he was doing so well. Fingers crossed that they get to the bottom of the problem quickly.

Highlights and Setbacks

Thursday I went into Pinderfields early to spend time with his OT to learn more massaging techniques for Marks hands. Following that we went to his Physio session and that day he was in the standing frame. Sounds simple doesn't it, get into a standing frame and there you are. No. First Mark has to transfer from his chair to a plinth (a large padded massage looking bench), which took nearly 10 minutes, then he has to shuffle to the corner of the plinth where the standing frame can be pushed close to the plinth. Once everything is in place his feet are placed in the right place on the frame, he leans forward to stretch his arms over the front of the frame to help get himself up, then the Physios give him a shove up at the same time he pulls himself to a standing position - picture below is very similar to what Mark is using. There are many benefits to standing, it prevents the leg muscles atrophying, improves range of movement and circulation, increases cardiovascular activity, helps prevent swelling in the legs and reduces kidney and bladder infections and improves bowel function.

Those are the upsides, however to see Mark standing and looking normal, was very emotional for me and bought a tear or two. It amazed me just quickly I have got used to Mark in a wheelchair, when only 3 months ago he was perfectly normal.

A friend watched him transfer from chair to bed yesterday, that was another first for Mark, so far only staff and Mike and I have watched or helped him do it. It looks a precarious operation when you see it for the first time, but as Mark improves his technique he's getting quicker and smoother with it.

Today, he wasn't so good. He didn't feel well this morning and he was in a lot of pain in his neck and shoulders. Painful shoulders are going to be a way of life for Mark from now on, moving himself really takes a toll on them. Next job for me to learn is to be able to free those muscles off, which is also a painful process for him. So consequently he had large doses of painkillers which made him sleepy. On top of that it seems he has another kidney infection which required antibiotics so he had a day in bed today. These little setbacks are to be expected but they still frustrate the poor guy when they come along.

New day new achievements

Everyday is a new day, new challenges and sometimes new problems. Yesterday, though was a milestone. Yesterday Mark did his first un-aided transfer. It's a huge physical and psychological achievement and we're really proud of him. For him it's a boost to his mental well being as transferring is key to his independence. It also shows just how much his strength is returning, those legs are not the lightest to lift!!

He also got his full leg compression stockings yesterday, how the nurses managed to actually get them on is a wonder. They look like 100 denier hold up stockings. Who said Mark never let his feminine show - suspender shopping tomorrow! They should help enormously with preventing fluid settling in his legs and feet which will help with training the bladder which will hopefully wean him off having to be catheterised so often. They should also help with blood pressure by preventing blood pooling in his legs. Once his blood pressure is under control he can spend longer in his chair each day.

Yesterday was also interesting as we had visitors (Janet and David from Lefkas - great to see you guys) who haven't seen Mark since before the accident and it was interesting that although they weren't sure what to expect when seeing Mark, they were surprised and pleased that he looked better than they expected. Although I have tried to describe Marks continuing improvement I obviously haven't really been able to express how he is beginning to look like his old self, albeit a tad slimmer. His hair is nearly at it's summer crew cut length, his face has filled out, his hands are steady and very very clean and regaining strength every day. His biggest complaint is his 'baboon belly' as he calls it. All the muscles around his abdomen have collapsed and are not likely to return but apart from that he looks almost as he always has. I think it's time to put some pictures up so watch this space ......

Mark and I are parted for a week - go to Greece to pack up our boat

It's been over a week since my last blog, leaving Mark for a week was quite a wrench for both of us, we've spent more of less 24 hours a day together for the last 4 years and been through this life changing trauma together. His week without me started off with a sore throat and a slight cold. He had an x-ray to ensure his chest was clear and thankfully it was so didn't need any medication for that and managed with strepsils for his throat. He also began a regular program of catheterisation to slowly bring his bladder to as normal a function as possible. One of the problems they have discovered is that fluid is settling in his legs during the day instead of going through his kidneys then into the bladder, so he is passing very little water during the day and loads through the night. To deal with this he has been measured up for full leg compression stockings. Time for me to get in the suspender belt I think! It will take about a month before we know how successful that will be.

He had an afternoon with a group from Back Up - www.backuptrust.org.uk/Home This is a fabulous organisation who help hundreds of spinally injured people every year through mentoring and courses to learn how to make their life easier at home, as well as developing independence and self-esteem, the afternoon noticably improved his wheelchair skills. Part of his Occupational Therapy sessions are now spent in his room, dressing, getting his own things out of his locker to use in the bathroom and generally becoming more independent. His gym sessions continue to work on his transferring skills, he is about 80% along the way to being able to transfer from bed to chair. It doesn't sound much when written quickly but it's a enormous step forward and takes huge amounts of effort and determination on Marks part to achieve. He also had a session in a standing frame towards the end of the week. He said it felt really weird but it's good for circulation, bladder and bowel health and general well being, it's a piece of equipment he will have to consider when we eventually get settled in a new home.

Just before I left they had given Mark a neoprene corset which is supposed to help with blood pressure. It is continually making his abdomin muscles spasm which is beneficial in improving his blood pressure and therefore enabling him to stay in his chair longer, but it has the downside of being uncomfortable due to the feeling he's having a constant workout. An unexpected benefit is that it helps him return to an upright sitting position much easier when he has been leaning forward. So far it is helping with his blood pressure.

Having left Mark for a week I expected to see quite a difference in him when I got back. However the changes now are much more subtle. His hands are losing their shakiness and slowly looking much more normal, albeit still a long way to go in regaining strength. The improvement in his wheelchair skills although minimal is significant. His moral however is not brilliant. He can't be 'up' all the time, we understand that but I fear he is becoming more institutionalised and that leads to being more inward looking. Again perhaps perfectly natural but not healthy. He spent alot of time over the last week reading about and researching spinal injuries and maybe now we're moving into that phase when we begin to realise just how difficult it is going to be rebuilding a life. The physical improvements continue in a mostly forward direction. The physcological and emotional aspect is another matter entirely. Mark now has his own laptop so if anyone feels inclined to send him an email, I think it will help to know he has so much support out there - please DON'T inundate him with jokes or put him on your joke distribution list and don't always expect an answer - markwycherley@hotmail.com

Finally, a huge thanks to our friends in Greece, the time and effort you have put into supporting us, not just emotionally but financially is overwhelming. Face to face I have tried and failed to really find the words to express our thanks and to explain just how much it means to have your support. Now that I try to write it, is equally difficult. Faced with such a life changing event, you find out just how important friends are - not just today, but tomorrow and the day after, the week after and the months after that. Although we don't have the same day to day contact, I think about you all daily and hope you continue to support each other as we travel this journey together.