27 April 2005

My appointment with Gavin was in the afternoon so I had the morning free to do some exercises and packing. I did my usual exercise bike and mini trampoline first and then went on to help Tim with some accounts that he needed for a meeting. I think I’m used to the fact that he always needed something urgent in the last minute. When I was working in accounting, I used to hate clients doing that – calling up in the last minute and wants something done just like that. I hated it because it meant I had to stay back or organise and get someone else to stay back and do it. On the other hand, those are the sort of jobs you can really make profit on. Since they wanted it in a hurry and didn’t give you too much time, you can almost always charge a premium on those jobs and they would never argue with you about the fees. I don’t think I miss those days at all.

I think morning physio sessions work better for me. I was feeling a bit tired already before I went to Epworth. I was a bit early for my appointments so I waited at my usual spot for Gavin. When he came in, he set me up on the mini trampoline first and then instructed another physio, Tracy, to stay there with me because he wanted me to do one minute of trampoline and one lap of walking and then the same again without the ankle brace on. It was pretty easy with the brace on but when I took off my brace, it was a different story. My whole body tensed up because the fear of injuring my ankle when it inverts. When I’m tense, my arm just kept going up and I really hated it. Gavin came to check on me from time to time. I told him that I really hate this because of the fear. I think this was a mistake because he said he’ll get me to do more of this until I feel comfortable with it.

I lost track of time but it felt like forever. It felt like I had my one hour session but Gavin came out and told me to go to the treatment room and he’ll get me to do some shoulder exercises. He directed me to go to the physio bed at the end of the room. There is another woman on the physio bed next to me. He set up some leg exercises for her to do and then handed me a stick and ask me to lift it up with both arms. I couldn’t see myself but I felt my left arm was not quite straight when I tried to push up the stick with both my arms. After a few repetitions, he put a wrap weight on the stick and asked me to do the same again. It felt quite heavy but when I looked at the weight, I was surprised to find that it’s only 1.5 kg. It felt a lot heavier than that. Gavin asked me to do 3 sets of 10 of this. My arms were quite tired before I finished. I told him that it felt like the stick is getting heavier but he turned around and corrected me. He said my arm is getting weaker. Whatever, anyway, the point is my arm is getting tired! He said once I master all these tricks, I’ll be discharged.

The next exercise he got me to do is a bit like Prema’s stretches for internal and external rotation of the shoulder but with weight. I found this quite hard to do because I have to prevent from just let gravity takes it which means I need to use more muscles.

The woman next to me complained about her back or shoulder pain. Gavin said it's called old age. I must have lost my sense of humour because I wouldn't think it's funny if he said that to me. In fact, I must be getting too sensitive because Gavin asked me if I was going away this week and I thought I heard him saying 'are you gaining weight' and I was not amused at all. Tim is probably the only one who can get away with calling me fat but nobody else can.

As I was leaving the treatment room, Gavin wished me a good holiday and said at least I can't get into trouble in Canberra. I told him no because there is nothing in Canberra. There were 3 other physios in the room and all guys. One of them mentioned about the adult shops in Fyshwick and they all started laughing. I must be getting old and stuffy because I didn't find that funny at all and was a bit offended by that.

26 April 2005

Tim had to run a tutorial for a group of lawyers this morning so he got up fairly early so he could get Lillian ready and take her to childcare. I had to go to my self help group hydro but my session is not till 9 a.m. so I wasn’t in a hurry. In fact, I think I got there too early last week and I had to wait around for ages. MECRS is so close to my house and it’s much easier when I don’t have to wait for the taxi anymore. Sometimes, I wish there is a lot more parking at Epworth so I can just drive there.

When I got to MECRS, it was still quite early. I parked my car at a disabled parking spot just outside the building where I stayed when I was an in-patient. There were no other cars there so I didn’t even need to do a parallel parking, something I still don’t like doing.

I was the first one to arrive at the pool. When I went to the office to pay, one of the MECRS staff asked me how was my long weekend. It took me a few seconds to come up with a response. I guess I'm just not used to people asking me that anymore. I felt like saying to her that everyday is like a groundhog's day for me so a long weekend is just the same as any other day. Maybe Gavin knows how his patients feel so he never asks me about my weekend. In the past, when I have too much time left in the session, I’d do some swimming but since Judy told me that I’d better not swim because of my ankle inversion, I thought I’d better make sure I don’t have too much time left at the end. I repeated my arm exercises many times before I moved on to my leg exercises. I wasn’t tired after the hydro but by the time I got home, I was feeling quite exhausted.

I’m feeling quite stressed out because the bathroom renovation starts this Friday and we’re leaving for Canberra on the same day. I have to make sure we pack away all the stuff in the bathroom now before then plus all my and Lillian’s packings. Fortunately, I spent the whole weekend doing Tim’s BAS’ and have finished them all. At least there is one less chore to worry about.

22 April 2005

I was still tired when I woke up this morning. I wish I could sleep in more but I had to get ready for my appointment with Gavin this morning. I did my exercise bike and mini trampoline ater I got out of bed. I think I felt a little bit more awake after the exercises.

It was still early when I got to Epworth. I went to the usual physio treatment room and waited for my session. While I was waiting, David, another physio, was treating an elderly patient. I noticed that he was quite pushy to the patient. The elderly was obviously tired and wanted to lie down but he wouldn’t let him. He told the patient to use his tommy muscles and sit up. I was quite surprised to see that they are pushing the elderly patients as well. This is very different from the MECRS approach. I know if that guy was at MECRS, they would have sent him back to the ward to rest in stead of pushing him. David told me Gavin should be here in a minute. He also told me that Gavin has just been awarded his PhD so he is officially a doctor now. That was pretty quick I thought. I remember my first meeting with John Olver back in January and he mentioned to us that one of their physios is doing his PhD (on running) and has just submitted his thesis.

When Gavin came in, he asked me how did I feel after our Wednesday session. I told him that my calf was quite sore. He asked me which part of the calf and I pointed to him. He said that's good because it's working the right muscle and that's what he like to hear. He then set up a 25 degrees wedge for me to do my calf stretches. After the calf stretches, the mini trampoline and then walking practice. After a few laps, he wanted me to take off my ankle brace and do the same but without the brace. I was freaking out because I was so worried about my ankle. I didn’t think I could get on the mini trampoline without the ankle brace, not to mention jogging on it. He told me to jog but just don’t lift up my left leg. It was not too bad if I didn’t have to lift up my left leg. Walking without the brace on was a real challenge – it’s a bit like when I get out of the pool but when I go to hydro I always take my stick with me so I don’t have to walk barefeet without any support. Gavin kept telling me to just forget that I don’t have the ankle brace on and walk like I was walking before and don’t lift up my left foot but just drag it along. I was still freaking out and could hardly move. Gavin stood in front of me and somewhat supported my left foot with his foot and asked me to walk. I took a few steps but felt very unstable. Gavin reminded me that I need to tuck my bottom in when I take a step which I found really hard without the ankle brace on. The hallway I normally do my walking practice seems much longer today and I felt I was moving so slowly. When I mentioned to Gavin that this is so slow, he reminded me that this is how I walked with the brace on 2-3 weeks ago. He said it just shows I have a lot more potential to improve if I really work at it. One thing I like about Gavin is that (so far) he is quite positive. I’m so sick and tired of negative comments from the health professionals from MECRS. I think there should be a rule that they are not allowed to say anything negative to patients.

After a few laps, Gavin told me to go back to the treatment room so he can have a look at my shoulder. When I went in there, I saw that he has left my ankle brace on a physio bench so I sat down next to it and was going to put it back on. Gavin walked in and told me to go to the physio couch at the far corner. I told him I’ll just put on my ankle brace first. He told me not to touch it and he actually took it away from me so I wouldn’t be tempted to put it on. He set up a theraband and for me and showed me the exercises he wants me to do. After that, he also grabbed some free weights and showed me the exercises he wants me to do with weights. I only have one session with him next week because Tim, Lillian and I are going away next Friday. Gavin said when I come back from Canberra, he will get me to work harder on the leg and especially with the foot but without the brace on. I’m not looking forward to that!

I had to wait for a long time for my taxi at the reception. I wasn’t the only one there waiting. There were a few people there but they must had car accidents because when the receptionist ordered the taxi, she quoted some reference number. I think TAC must be paying for them. I noticed that they all look pretty young. The two guys sitting next to me were talking and I couldn’t help eavesdrop. One of them (with an arm sling with plaster – looks like he had a broken arm) must have just been discharged from the hospital recently because he was talking about how great it is to be able to sleep in your own bed – something I can relate to. He was also talking about how tired he feels all the time. A speech therapist walked pass and she stopped to talk to them. She said to the guy who had a broken arm that she’ll get him to talk to another patient of hers about how tired people feel. She said she was trying to tell this patient that he can’t just go back to work in 4 weeks time because he will be too tired. I wonder whether he is an accountant. Only they are mad enough to take work so seriously, like I used to be. They talked for a while about fatigue etc but I just switched off. It something I don’t want to hear and don’t want to know. People often talk about fatigue for those who had brain injuries. It might be true but it’s something I rather forget otherwise it’s a bit like self fufilling prophecy and it gives me an excuse to feel tired all the time.

The taxi driver on the way back was quite and not too nosy. He asked me if I had an accident and I said no and that was the end of conversation – just how I like it. We drove pass two accidents along the way. One of them still had the driver in but I couldn’t see if she was injured - the car was in a pretty bad shape though. On the other side of the road, there is a crowd of people watching. I wonder why these people are so nosy. Don’t they have better things to do? I hope one of them remembered to call the police.

21 April 2005

I was so tired when I woke up this morning. My muscles were really aching. I think they had a pretty good workout yesterday. I felt like sleeping in a bit more but I remembered my appointment with Jill, the social worker from ARBIAS, at 10 a.m. so I had to get ready before then.

I didn’t feel like doing the exercise bike this morning so I did the mini stepper instead and then the mini trampoline. My legs were quite tired but I just want to make sure there is enough for Judy to work on today since I have an appointment with her at 12.30 pm.

Jill didn’t turn up at 10 a.m. I thought she might be just running a bit late because I noticed that she was never on time with our appointments. There are many chores I need to do such as online grocery shopping and Tim’s accounts but I didn’t want to start on those and then she turns up and I’ll have to stop again. I waited till almost 11 a.m. and thought it’s a bit rediculous that she’s an hour late so I called her on her mobile to find out what’s going on. It turned out that she thought I was away so she crossed out our appointment in her diary. I reminded her that I’m not going away till next week and I saw her writing down our appointment in her diary. She checked again and told me that I was right. She wanted to reschedule our appointment but I told her it’s better if I can sort out my appointment with Gavin first and then let her know. I know this seems really trivial but it sort of stuff up my morning a little bit.
I often wonder why accountants are the only ones who can’t make any mistakes now that I have a lot more dealing with people in other professions. Imagine if I didn’t show up at a client appointment when I was working in an accounting firm, I think I would have lost the client.

Judy turned up a bit earlier than scheduled. I told her about what the orthopaedics told me about my shoulder and that Gavin will have look at it tomorrow. She’s a bit concerned that if Gavin spends time on the shoulder, it would be at the expense of the leg. She said she’d like to see me running first before Gavin looks at the arm. I told her that I probably don’t need Gavin to spend too much time on the arm but I’m also concerned that because my arm has recovered quite well, people may neglect treating it. There may be a lot of problems with it but without a professional checking it thoroughly, I probably wouldn’t know. It’s just like I didn’t even notice that I can’t shrug my left shoulder as much as the right shoulder until Rosemary pointed out to me. I mentioned to Judy that on Tuesday when I was in the MECRS pool I tried to swim but my left ankle was inverting so much and in the end I had to stop because it hurt. She worked on my leg a bit and ask me to move my leg sideways without moving my foot. I couldn't do that because everytime I tried to move my leg, my ankle just inverted. She told me it's probably too early for me to swim and I probably shouldn't do it if the ankle inverts so much.

Prema came in the afternoon but her hand is still unwell. She said she just wanted to check how I was doing and whether I had any questions with my exercises. It’s so nice of her to do that. I told her about my meeting with the orthopaedics and asked her about how to strengthen my trapezius muscle since that’s the muscle that shrugs the shoulder. She gave me some stretches and exercises to do. She told me I should do them after a hot shower or have a heat pack on for a while because muscles work better when they are warm. I think that’s good advice because I tend to do the opposite. I tend to do my exercises cold and have a shower after my exercises.

20 April 2005

I had an appointment with Gavin this morning. I did my usual exercise bike and mini trampoline before taking a taxi to Epworth.

When I was in the taxi, the taxi driver asked me what happened to me. I told him I had a brain surgery to remove a tumour. It’s not something I’d like to talk about but I get asked so often that I’m quite used to it now. He asked me if I had any headaches. I told him for years I had that all the time. He started to tell me that one of his friends has terrible headaches a lot but the doctors didn’t know what’s wrong with him so he is in constant pain. I asked him whether his friend had an MRI or CT. He doesn’t know. I told him to tell his friend to get a scan or MRI just in case. He thanked me for my advice. It’s kind of strange that people are asking me for medical advice. Last time I had a taxi driver asking me about stroke and this time, brain tumour. I find it less consuming than someone asking me for tax advice. I guess it’s because if it’s a medical question, I don’t know much anyway so I don’t have to think very hard about it.

When I got to Epworth, Gavin was with another patient so I sat down and waited for him. While I was waiting, I was looking around and then I found some exercise sheets pinned up on the noticeboard. I looked again and these are actually exercises prescribed for other patients. I was quite excited about my finding and read through them all to see if I can pick something for myself. When Gavin came in, he told me to start with the trampoline. He got me to start with the normal jogging and then try to lift right leg up and then lifting left leg up. He left me there to practice for a while and when he came back he asked me to do the same jogging but alternative between lifting right and left leg up. I did quite a bit of work on my legs over the last two days and my left calf is quite sore. I told him that my calf is sore and he said that’s good because it means it’s working hard on my calf muscles.

After the trampoline, he asked me to do some walking down the hallway. He asked me what did I think of my walking. I told him that I couldn’t really tell without looking at myself in the mirror but I think it’s probably more continuous. He agreed but commented that my left hip tend to collapse when I walk so I need to strengthen it. He said my walking practice should be combined with the trampoline. He thinks I should start with the trampoline first and then walk one lap and then back on the trampoline for 30 seconds and do another lap of walking and so on. He said the trampoline work should help me to walk faster. After a few laps of walking and trampoline, he set me up on the stepper. He asked me if I need a rest first – that really surprised me because he’s never asked me that before. Maybe he’s been treating too many elderly patients lately! I told him I’m actually ok. He demonstrated what he wanted me to do – push up through my arms and step up and down on the stepper like running. It looked easy when he did it but I couldn’t even get started. It’s much easier to use it like a step machine just like going upstairs but very hard do run on it. He helped me up to get me started and then told me to do it for about 10 minutes. He said I’ll probably feel pretty stuffed after this. I asked him what muscles am I working on. He told me it’s the glutes and the quads. He left me alone there to practice while he went to check on another patient

After a few attempts, I finally got it started without help but I couldn’t stay on it for very long – once I loose the rhythm, I just have to start again. I actually quite enjoyed this because it’s something new and I found it quite challenging to figure out a way that I can stay on it for longer. Gavin came back to check on me before the ten minutes was up. I almost felt like telling him to go to the other patient because I was having so much fun on the stepper and I haven’t finished yet. Ten minutes went pass very quickly and Gavin reminded me that I’ve done 10 minutes of it and that’s enough. He asked me if I was exhausted. I actually didn’t feel too bad. I told him I felt ok now but I’ll probably feel stuffed later. He said not many people can do 10 minutes of what I just did. I told him I didn’t actually do 10 minutes – I had to stop and start again. He told me that’s how other people do it as well. He thinks I’m probably a lot stronger and fitter now with all the exercises I’ve been doing. Just before my session finished, I asked him whether John is back because my orthopaedics, Martin, was going to write him a note. He asked me what did the orthopaedics say. I told him Martin thought my shoulder has recovered well and all I need is more physio work now. I also told him that Martin mentioned some stretches I need to do for the shoulder but I’m not sure what stretches and he’s going to write a note to John. From the description, it sounds like external and internal rotations. Gavin said he didn’t think I need the streches but strengthening the shoulder, especially upward direction. He said he wants to spend half of the session on the shoulder next time.

On the way back, the taxi driver asked me what happened to me. When I told him that I had a brain tumour removed, he was quite shocked and commented that I’m so young and pretty. I told him that it has nothing to do with age. I complained to him that people always ask me what happened to your leg and people often thought I had a broken leg. He was quite apologetic and said it’s fine if I don’t want to talk about it. I told him that’s fine. I’m used to it now. It’s quite refreshing to know there are still sensitive people out there. He thought I recovered really well considering I had a brain surgery. He asked me if the surgery has affected my cognitive function. I told him probably not but often I wonder if it has and the difference could be so subtle that people can’t really tell. He said he can’t tell at all so I must be ok. I know he’s trying to be nice but I felt like asking him if he is qualified in that area . I told him that I get quite scared whenever I forget something because I don’t know if it’s normal to forget something sometimes or it’s caused my the surgery. He said it’s a good sign if I keep questioning that because it means I’m aware of what’s going on. People who have cognitive deficit often don’t know that they have problems. Come to think of it, it does make sense. It kind of made me feel better to think that way. He said I’m very lucky because the surgery only affected me physically and I will get better. He thinks it’s a lot worse to have cognitive deficits. I think he is right.

In a way, I think this happened to me for a good reason(s). For a start, it made me realise what a good husband Tim is. He’s been so supportive throughout the whole episode and has always remained positive. In the past, I always wonder how much does he love me. I don’t wonder about that anymore because he must love me very much to go through this with me. It also made me realise what good friends Neil and Rosemary are. They have worked with me on my arm as soon as they found out MECRS didn’t do anything about it. They are not trained physios but they took their time to think about exercises to help me with the recovery of my arm. You can’t get better friends than that. Another good thing is that I actually have a lot more time cooking and quite enjoy it. Apart from my physical ‘disability’, I kind of enjoy my life now – ok. I don’t like the way I look now but nobody is perfectly happy with their looks anyway. I must say I panic when I think about going back to work. Tim thinks one good thing came out of this is that I’m less career minded. That’s true. It makes me wonder why I spent endless hours in the office instead of enjoying life. I think my whole outlook in life has changed (for the better).

18 April 2005

I only had one appointment today – an appointment with my orthopaedics, Martin Richardson, in the afternoon. I did my usual exercise bike and mini trampoline in the morning and then exercises set by Neil and Rosemary.

My appointment time was at 2.50 p.m. I did some research on the internet to see if there is any commercial carkpark around that area but I couldn’t find any. I know there are so metered parking around there but it’s usually taken. I tried to look up the Epworth website but it says the carpark is for staff only. The easiest way seems to be taking a taxi. I called for the taxi at around 2.10 p.m. just in case the taxi takes forever to come. It has happened to me in the past that I called for a taxi and it didn’t turn up and I was late for my appointment. Surprisingly, the taxi turned up within 5 minutes and the traffic was not bad. I got to my appointment at about 2.30 p.m – 20 minutes earlier than scheduled time. The receptionist told me Martin is running a bit behind schedule today so I sat down next to a pile of trashy magzines.


It was about 3.45 p.m. when it’s finally my turn. The receptionist showed me to the consultation room – they usually put one patient in the room waiting while Martin sees another patient in another room. It’s quite boring waiting there on my own. Tim has accompanied me in the past but he’s busy today so I was there by myself. I didn’t look at my watch when Martin finally walked in. I think it must be around 4 p.m. – more than one hour behind schedule. I was actually glad Tim was not there with me. I can just imagine the complaint I’d get from him to keep him waiting. Martin didn’t appologise – doctors usually don’t for some reason. I guess like someone at MECRS once told me, you have to be patient to be a patient.

He checked my shoulder and was very happy with the progress. He told me that Andrew (Prof Kaye) has written him a note that he’s happy with my progress. I told him that I’m having my physio at Epworth now and thanked him for referring me to John Olver. He mentioned that there are other treatments (can’t remember the names now) - one involves the insertion of a telescope into the shoulder to repair the damanged tissue and another involves the insertion of a needle. He said he told me just to let me know that there is treatment if I ever need it but I don’t need it right now. He said he’s very happy with my progress. I asked him what would it take for me to gain a full recovery of the shoulder. He told me it’s all physio work now. He thinks I need to stretch out my shoulder a bit more so he said he’ll write a note to John to let him know. Neil just reminded me on the weekend that Rosemary told him I can’t really shrug my left shoulder. I’ve almost forgotten about it until Neil mentioned to me. I asked Martin about it and he said it’s the trapezius muscle that does the shrugging so I will need to work on that muscle. Again, that’s something I need to discuss with the physio. I told him that I’m quite happy with the physio at Epworth but so far we only concentrate on the leg but not the shoulder and arm. He said it’s time they look at the arm as well and he’ll write a note to John. He said he’ll also write a note to Prof Kaye. In a way I think I’m pretty lucky that Prof Kaye took interests in my progress and referred me to Martin when he found out I had a subluxed shoulder. Since Prof Kaye is quite well known and respected in the medical profession, everyone wants to be in his good books. I think Martin is quite keen to impress Prof Kaye as well.

15 April 2005

I had an appointment with Gavin this morning. When I got to Epworth, I recognised this girl in an electrical wheelchair. I think her name is Eliza. She must be going to her physio session as well. I never actually asked her what happened to her. I think she probably had a car accident because she is still in a pretty bad shape. Apart from unable to walk or move her arm , she also has lost the ability to speak. Her physio is Cathy and we both have our appointments in the same room at the same time.

Gavin set up a 5 cm box in front of a mirror for me and asked me to pracrtice standing on the edge of it with my right foot only and just relax my left leg and leave my left foot hanging. He wanted me to practice this because he said when I walk, I tend to lift up my left leg which is not the natural way of walking. He wanted me to practice this in front of the mirror and make sure I have a good posture and at the same time, relax my left leg. I asked him how can I tell whether my left leg is relaxed or not because I might think it’s relaxed but it may not be. He said the arm is a good indicator because when my left leg is tense, my arm tends to go up.

When I was doing my exercises, Gavin was just finishing up with another patient. I overheard them talking about calf stretches so I paid a bit more attention to what they were saying. He was telling her that he thinks calves are generally over-stretched and under-utlised. I noticed that she was doing the same toe raising exercises he got me to do a couple of weeks ago. I didn’t hear what she was asking but it must be related to spasticity because I heard him saying that don’t worry about spasticity when you do the calf exercises. You just need to learn how to swith them off after you’ve done the exercises. This is a bit like what they told me at the Bobath course when I asked them if they thought my calf was tight. They thought my calf was not tight but my brain just does not know how to switch it off.

Cathy started doing some work with Eliza as well. She put Eliza’s wheelchair in the walking rails and tried to help her to standup. I think Eliza must be in pain because she kept screaming and then I heard Cathy telling her to stop screaming and she’ll help her to adjust her hand. I couldn’t tell whether it was her shoulder or the standing that was causing her pain but she just kept screaming. I found the scream quite disturbing and was glad when Gavin took me to another room and got me to work on the trampoline. He got me to start on my old exercises on the trampoline– a bit like jogging but without lifting up the foot. He then got me to do the same thing but try to lift up my right foot. After a while, he got me to change to lifting up my left foot. Another 10 minutes later, he said he’ll get me to do something harder which he thinks it might be a bit too early for me at this stage – alternating between left and right leg. I tried that and found it quite difficult so he demonstrated again what I should be doing. It’s very hard to keep the rhythm. I think I was getting better after a while but still tends to lose the rhythm from time to time. Gavin actually thought I was doing really well. He said it’s a lot better than he expected. I told him I keep losing the rhythm but he reminded me that a few weeks ago I didn’t have the rhythm at all so I’m actually progressing really well. He asked me to do a few more laps of walking after the trampoline. He said I should feel the walking becomes easier but I couldn’t feel that. I told him one of the biggest problem I have is that when I’m practising walking I don’t really remember what it feels like when I’m walking correctly. He said it will come and it’s just a matter of practice.

Stuart, a friend of mine, came over at lunch time. He’s been trying to catch up with me for some time but Tim has been so busy and we never made it to his place. Last week, he suggested that we catch up for lunch. He was going to bring some sandwich ingredients but last night I thought I should really be cooking some lunch since he’s making an effort to come to see me. I made some spiced lamb with couscous. It’s another dish from the Marie Clare cookbook.

Neil came over later in the afternoon to help me with my exercises. It’s good to have him helping. Sometimes, I don’t remember the state I was in so I don’t notice the progress but Neil remembers everything. I think in some way he and Rosemary knows my situation better than the physios. I told him that I’ve actually made the Mt Everest exercises harder by replacing the ball with a 1 kg dumbbell now. When we went through the exercises, he commented on how much progress I was making. It’s good to have him around when I’m doing the exercises because it’s very hard for me to tell the progress I’ve been making.

14 February 2005

My appointment with Prema today was schedule at 11 a.m. After my usual exercise bike and trampoline, I had to get ready to go to VicRoads. I received a notice in the mail (from VicRoads) the other day that they have put a restriction on my license – I can only drive a car with automatic transmission and power steering. It also stated that I need to have another OT driving assessment in October 2006. This is really disappointing. I thought I had finished with those crooks and never have to see them again. I think the OT driver assessor must have imposed on this additional test next year so he can squeeze more money out of me!

The notice from VicRoads also says that I need to have a new photo taken for the license. This is really annoying. I like my old photo at least I think I looked better then. I was thinking when would be the best time to go to VicRoads. I know I can also go to a photopoint to have my photo taken but it would be easier for me to go to VicRoads because I can get my new license straight away rather than waiting for them to post it. I have been checking the weather forecast to see when it would be good day for me to drive to VicRoads. I know it sounds strange and one might ask what does it have to do with the weather. It actually has everything to do with the weather! Before I get my prescription sunglasses, I don’t think I want to drive on a sunny day because of the glare. I don’t like to wear my contact lenses anymore because after haven’t been wearing them for a while, my eyes are not used to wearing them anymore and I always find my eyes very dry and uncomfortable. I told Tim yesterday that if it rains today, I will go to VicRoads and get my new driver’s license.

It was pouring when I woke up this morning so I know it’s definitely the right weather for me to drive. I did my usual exercise bike and trampoline before I started to get ready to go. The phone rang when I was in the shower. I wonder who that was but didn’t bother to get out. I’m sure the person will ring back if it’s important. I checked my mobile phone after I got out from the shower but there was no message. I thought maybe it was some cold calling again. These days I’m home most of the time and I received many calls from charities asking me to sell raffle tickets for them. I found that a bit annoying and told them that I’m actually a bit disabled myself and I don’t go out very much so I can’t sell the raffle tickets for them. They usually leave me alone after hearing that. I have noticed that most of the cold calls call me Mrs van Gelder instead of Teresa. I think that’s a give away for a cold call so maybe in future if I receive a phone call that addresses me as Mrs van Gelder I should just tell say that Mrs van Gelder is not home and I’m just the housekeeper so I don’t have to talk to them. The phone rang again and it was Prema on the phone. She had to cancel our appointment today because she is still unwell. She had acupuncture last Friday and she said the therapist stuck a needle into one of her nerves on her hand and caused some damage. She said her hand is still very sore today and she can hardly use it. What’s worse is that was her right hand and she is normally right-handed. I can understand how hard it is because for a while I only had the use of one hand as well.

After I got off the phone with Prema, I thought I’d better go to VicRoads to get my license. I drove to the VicRoads on Lygon Street. Tim sort of showed me where it is yesterday when we took Lillian to my parents’ place last night. The traffic was better than I expected so I got there fairly easily. It was pouring outside but I felt quite comfortable in the car. I kind of like driving around on my own – I feel that’s my space and I don’t have to talk to anyone or be stared at. When I got to VicRoads, I was surprised to see so many cars in the carpark. I didn’t expect it to be so busy. I didn’t see any disabled parking around so when I found a spot next to a big four wheel drive, I quickly pulled in and parked there. Getting out of the car was a bit tricky. The spot was so narrow and so close to the 4 wheel drive so I couldn’t open the door wide enough for me to get out. In the end, I had to climb out of the car. It was pouring and by the time I got the umbrella out of the car, my shirt was all wet. This is just great – I will have a photo taken with a wet shirt and I have to put up with it for ten years! I had to look around for the entrance to the building. When I found it, I realised that there are stairs that I had to walk down. I saw someone standing by the stairs and as I was walking towards the stairs, she was looking at me. I didn’t really care that I just wanted get away from the rain. As I was walking towards her, I noticed that she looked away. I appreciated that she didn’t stare at me like the doorman did when we went to the comedy festival. As I was walking down the stairs, I could feel that she’s looking but I didn’t bother looking at her. I was glad to Gavin pushed me very hard to walk up and down the stairs like normal people do because this is how I walked down the stairs today (with the rails). I didn’t feel so embarrassed when I walked down the stairs knowing someone was watching because I know she probably thought I had a broken leg instead of a neurological event. I deliberately wore a ¾ pants today so my ankle brace is visible. I’m hoping that people will think I have broken leg or something. When I walked downstairs, I just realised that the disabled parking is right outside the building.

When I went in, I was a bit mortified by the open space – there were many people waiting and it’s quite a distance between the seats and various service counters. I stood by the door and looked around a bit. I didn’t want to walk all across the room that everyone can see me limping and start staring at me. I noticed there is an information desk just a few metres away from where I was standing and decided to go there to find out what I need to do. I was told that I had to go upstairs to have my photo taken. I was glad to find that there is a lift so I took the easy way out. When I got out of the lift, I saw someon taking a ticket so I followed her and took a ticket too. I was a bit scared because there were many people there already and I just don’t want people staring at me. Somehow I found myself walking sideways. That seemed to be the easiest way to walk when I wanted to walk a bit faster. I felt more at ease because I noticed that some people were looking but not in a rude way. I sat down and waited for my number to be called. I didn’t have to wait for too long before I was served. The officer told me to go to the other side of the room to have my photo taken. I had to hand back my old license. He looked at it and asked me why do I need a new lincense. I thought that was a strange question since I’ve already given him the VicRoads notice. I had to explain to him that I had a neurological event and had to have my driving reassessed. Fortunately he didn’t ask me what sort of neurological event I had. He took my photo and handed me my new license.

I had an appointment with Judy after lunch. I tried to do a bit more exercises before she came so she can have more to work on. I told her that Gavin taped my foot yesterday and I walked around without my ankle brace while my foot was taped. I noticed that my calf is quite sore today and I wonder if it had anything to do with the taping. She said it’s good that my calf feels sore – it means it’s been stretched in the right way. She said the ankle brace gives me a sense of security but does not hold my foot in the right position and does not stretch the muscles correctly. She thinks I should have the tape on for longer next time if my skin can tolerate it.

Rosemary came in the afternoon to help me with my exercises. It’s so nice of her to do this. I felt a lot more motivated when someone is here with me. I was telling Judy earlier that it’s amazing how my arm has recovered so well without much help from physio but from the help of untrained friends like Neil and Rosemary. Judy thought that was pretty remarkable but she thinks it’s because Neil and Rosemary are smart and sensible people who listen.

Rosemay is becoming like Neil now. The first thing she did was asking me to show her my exercise book so she could check how much I have done. It’s a bit embarrassing when I have a few blanks. It was quite funny when I started doing the exercises as I was talking to her. She didn’t realise that I had started at first and thought it was a bit odd that I was doing the ‘chicken wings’ as I was talking to her. The giggles started after that! After I finished with the arm exercises, she suggested that I do some walking practice. I did a few laps of walking and then it’s the reaching for the ‘red gerbra’. I think I had a pretty good workout for my arm today. My arm felt quite heavy after the exercises.

13 April 2005

My appointment with Gavin was at 1 p.m. so I didn’t have to rush in the morning. Lillian was up about 7 a.m. Tim picked her up from the cot and put her on our bed before he went to have a shower. I wanted to sleep in a bit but Lillian was all over the bed. She even managed to climb over me and got off the bed from the edge of the bed. There was no way I could sleep in now. I made up a bottle for her to take to the childcare and picked the clothes that she’d wear today. I had to stand there watching Tim changing her into the clothes she’s going to wear today. I would always check the weather report and think about what she would wear and leave the clothes in the basket under the change table. Tim for some reason, always asks me what’s Lillian going to wear today. I always have to tell him it’s just under the change table! Sometimes, it’s just easier if I’m standing there watching so he doesn’t get the wrong ones.

I started with my exercise bike and mini trampoline after they had left. I didn’t feel very energentic today so the 30 minutes on the bike felt like eternity. I did some walking practice but didn’t want to exhaust myself too much before my physio session this afternoon.


I was still a bit early when I got to Epworth. All the doors in the physio treatment areas were closed so I had to wait outside. There was nobody around. I remember when I was organising my first appointment wih Gavin, he mentioned that the physio department is closed from 1 pm. This must be what he meant. I sat down on a chair but I didn’t bring any books or magzines with me so I was quite bored. I thought about reading and sending sms on my mobile but there’s a sign on the wall that tells people to switch their mobile phones so I didn’t switch on my mobile.

When Gavin came in, he asked me to get ready for our session (ie leave my bag in the office). I asked him whether he had a nice break last week just out of politeness but there was not really any response. I started to wonder if that’s just a typical male thing – they’re not really listening. Quite often, I might be asking Tim a question and for a while there’s no reponse. When I complained to Tim one day about this, he asked me whether I got a receipt from him. He said unless I get a receipt from him, he probably hasn’t heard what I was saying. I didn’t bother asking Gavin again since I didn’t really care whether he had a nice break or not, I was just trying to be polite. He asked me to do a few laps of walking and then he asked me to sit down on a physio bed so he can tape my foot. He taped my foot with the tape MECRS physio used on my shoulder a while back. He said this is to stop the ankle inversion. I told him that I saw John Olver last week. He asked me what did John say. I told him that John mentioned Botox again and asked him whether John has mentioned this to him. He said John has a shocking memory. I felt like saying ‘Yes. He couldn’t even remember who my physio was’.

He then asked me to put my sock and shoe back on but without the ankle brace and tried walking again. Surprisingly, the tape was tight enough to hold my ankle in position. I didn’t feel as secure as when I had my ankle brace on but it was secure enough for me to walk around. When I was in the middle of my practice, he told me to stop at a certain point and sat down on a stool in front of me, he tried to get me to move forward as Prema calls them – facilitated movement. He asked me to hold my right hand with my left hand instead of let my arms hanging and move forward as he ‘facilitated’. I hated this because at one point I felt I was losing my balance and the more tense I was, the more my ankle was inverting. I remember at one point I was losing my balance and needed to hold on to something and he told me to shift my weight to the right so I should have no problem standing with my weight on the right leg but I couldn’t do that. I thought I had move my weight over to the right but he asked me to look at myself in the mirror – he said my body weas actually leaning towards the left and if he let go of me, I would fall to the left. I didn’t believe him so he let go and I did fall to the left. I think I have a lot more problems than I thought I had. The brain damage obviously affted my balance and my perception of where my weight is.

I was quite happy when Gavin had to go and check on another patient so I could have a little rest – he asked me to practice standing on my right foot in front of a mirror but it was a rest for me when he wasn’t there pushing me. This is probably one of the most tiring session I had for a while. When he came back, he asked me to do a few more laps of walking. He told me not to lift up my left leg just let it drag. He said because the muscles are weak, every time I try to lift it, my leg tends to swing out. He also mentioned that I tend to stick my butt out when I’m walking and kept reminding me to tuck my bottom in as I’m taking a step. I mentioned to him that I’m going to see my orthopaedics next Monday and it would be easier if I can schedule a session with him on Monday as well since my orthopaedics is just at the Epworth medical centre. He asked me why do I have to see an orthopaedics. I looked at him (if they have read my file, they should know that it was my orthopaedics who referred me to see John Olver) and told him it’s because I had a subluxed shoulder. He asked me why would I go to an orthopaedics for shoulder subluxation. I don’t know the answer to that. I told him I don’t know but the neurosurgeon who operated on me referred me to see the orthopaedics when he found out my shoulder problem from Tim. I felt like asking him who else could I see to fix up the subluxation – definitely not a physio from MECRS. Gavin didn’t seem to understand and I could see that he was trying to spot the subluxation by looking. On my previous visit to the orthopaedics, he mentioned to me that my subluxation is all healed and he could see my deltoid building up. Gavin probably couldn’t see anything wrong with my shoulder so he asked me to lift up my arm (above my head). I lifted up my arm easily – thanks to Neil’s Mt Everest exercises. He asked me whether my arm is sore when I lift it up. I told him sometimes it does but it has been much better these days. I thought about asking him the program for my arm and shoulder but then again I didn’t want to distract him too much when we are working on walking since most men are not very good at multi-tasking.

12 April 2005

I went to my self-help group this morning. We dropped Lillian off at the childcare first and then Tim dropped me off at MECRS. I told Tim that once I get my prescription sunglasses sorted I’ll drive there myself.

When I got to the pool, there were a few people in the pool already. I have decided that I’ll be the last one to get out so I don’t have to hurry up in the shower. I didn’t even bother to get my exercise program today since I know them so well. It’s the same set of exercises Fiona set for me last September. She made them harder for me over the months by adding paddles and getting me to do them bimanually but I think I got to the stage that I need new exercises. I finished my arm exercises by about 9 a.m. and I still had 45 minutes to go. I told Tim last time that I think I need new program because I don’t have much to do in the pool. He said in weight training, people often do 3 sets of 10 and he suggested that I do that. This is exactly what I did and in fact I did the program three times. I tried to make the exercises harder by doing them faster because the increase in resistance when I increase the speed. After doing the exercises about three times, I decided that was enough for the arm and I’d do some swimming with the support of a noodle. I think it’s a good exercise for me because as I started to swim, my left ankle started inverting. I had to try to relax to stop the inversion. To avoid going around in a circle, I have to make sure I don’t try to swim with my right side only. The only way to do this is to relax my right side more and get left side to do more work. If my ankle inversion is like what Gerlinda said, all to do with the brain then I think this is quite a good exercise for me.

When I got home, I found that I couldn’t open the front door with my key. I had this problem before and I had complained to Tim before that we probably need a new lock but he didn’t seem to think that was a problem and for a while I haven’t had this problem. I tried it for a while without success and then I started to wonder if he had changed the lock when I was away. Fortunately I had my mobile with me so I called Tim using my mobile. He came home and I handed him to key to show him that my key didn’t work. He turned the key and the door opened just like that. It’s a bit embarrassing but at least I didn’t call a locksmith.
The first thing I did when I got home was calling Neil and Rosemary to arrange for a time for my exercises this week. I tried calling Neil’s office but there was no answer so I tried his home number. Rosemary answered the phone so we made a time to meet on Thursday. I didn’t talk to her for very long on the phone because she was doing some gardening when I called. I then tried calling Neil at his office again. This time he answered the phone. He was very pleased that I published 3 blogs yesterday and commented that my typing speed must have improved even more. Just out of curiosity I did another typing test and my gross typing speed is 36 wpm and net is 34 wpm. I checked my record and just about a week ago my gross typing speed was 34 wpm and net was 33 wpm. This proves that Neil was right, my typing has improved.

11 April 2005

When I woke up this morning, Lillian was still asleep. She is probably feeling a bit tired given that she was a bit unwell on the weekend. She had fever last Wednesday and then it lasted for a few days. Just as we thought she was getting better yesterday, Tim found that she had rash on her back and on her face before we were about to head off for the church yesterday morning. I was freaking out a little bit. My parents took Lillian to the GP on Friday because she had high fever and the doctor told them to watch out for rashes. It’s very hard to find a doctor on a Sunday so I told Tim to take Lillian to the Royal Children’s emergency. Tim thought he’d call Christella, his sister in law, who is a paediatrician. He tried a few times but there was no answer so he called Jamie, his brother, who is a neurosurgeon. Jamie told Tim that Christella is away but from Tim’s descriptions of Lillian, she doesn’t seem to have anything serious. Apart from the rashes, she doesn’t look sick and she doesn’t have a fever.

Tim’s mobile rang when I was making some lunch. I answered and it was Christella on the phone. She has heard about Lillian from Jamie and had called to see what happened. It’s very nice of her to do that. She spoke to Tim a bit just to find out more information about Lillian’s symptoms. She thinks Lillian has Roseola – a common viral disease of small children. I found some information on the Internet. Roseola is distinguished by the way in which the symptoms appear. In the first phase, the child develops a high fever. In the second phase, a red rash with bumps appear. The hallmark of roseola is that the rash appears after the fever goes away. This exactly what Lillian had. Her fever started on last Wednesday and it lasted a few days. Her fever stopped on Saturday night and the rash started to appear on Sunday morning. Although we think she had roseola but I still feel a bit nervous because we didn’t actually take her to a doctor.

I was running a bit late this morning with my exercises. Tim and Lillian left the house just after 9 a.m.. I did my exercise bike and mini trampoline after they had left the house. I also had to update my blog on the Internet because I was already a few days behind. I’m very concious of the fact that Neil and Rosemary read my diary over breakfast and Neil’s mother in the US also reads it so I need to update it as soon as I can.

I think the rehabilitation has turned me into a Stepford wife. I spent a lot of time cooking these days – something I never had much time for before. Today I plan to cook this Bolognese Bake I found in a magazine. From the picture, it looks a bit like the Moussaka. I hope Tim and Lillian will like it. Tim is still complaining about the vegetarian lasagne I cooked a couple of weeks ago. He thought it was so blend and tasted like baby food. I started getting all the ingredients ready after lunch. I like the recipes that use fresh herbs since we have some in our garden. Tim commented the other day that he planted the sage about 2 years ago and finally we got some use out of it. I got some basil and oregano from the garden for the Bolognese bake today.
I think my left hand is getting a bit better these days – in the past, I relied on the mini wizz to chop up various ingredients but now I can chop up an onion or capsicum coarsely without using the mini whiz. The Bolognese sauce took a while to simmer so while I was waiting for it, I did Rosemary’s and Neil’s arm exercises. When it was all cooked, I switched off the stove and went to the study to type up my diary.

I went back to the kitchen to finish off the cooking later in the afternoon. Fortunately I planned all this beforehand and had asked Tim to BBQ the eggplant for me yesterday, otherwise, it’d probably take me forever just to cook the eggplant. In the middle of cooking, I heard the door opened. Tim and Lillian are home. They are early today. Tim usually picks her up around 5.30 pm but today they are home about 5.00 pm. There goes my peace and quiteness!

8 April 2005

I think the outing last night had tired me out a bit. I just couldn’t get out of bed this morning. When it was about 8.30 a.m. I thought I’d better get up and start with my exercise bike. The 30 minutes on the bike seemed like eternity. When I finally finished, I did a bit of mini trampoline. I still had to finish yesterday’s blog. I checked my email and started doing my blog. When I went to save what I typed I couldn’t believe what happened. The Internet seemed to be down again and didn’t save a word I typed. Very frustrated with it so I started over again in Word instead directly in Blogger.com.

I had an appointment with Jill around 12.30 pm. I told her on Monday that I needed a haircut so she asked me to make an appointment with the hairdresser and she will accompany me there. My hairdresser appointment is at 1 pm. I booked it at this hair salon on Royal Parade. I’ve never been there before but it’s probably worth checking out since it’s so close to my house. The hairdresser I used to go is in town and it’s not so easy to get to. I started to panic when Jill didn’t show up at 12.30 pm. I tried calling her on the mobile but it went to her voicemail. I thought I’d wait for a few more minutes and then try again. When it was around 12.45 pm I thought she might have got the wrong date or time and I’d better head off to the hairdresser. I don’t think I’ll make it there in 15 minutes but I’m sure it’s ok if I’m a few minutes late. I called Jill again and left a message for her to let her know that I’ve left and she can meet me there later. When I shut the door behind me, Jill showed up at the gate. She said she was on the phone when I rang and suggested that she drives me there. We were able to get a disabled parking spot right in front of the hair salon so it was quite convenient.

I must say I felt much better that Jill was there with me. I felt I needed a bit of moral support when going to a new place. It was a bit akward when the girl who washes my hair asked me what happened to me when she saw me limping. I also found it a bit akward when I had to tell her not too scratch my head when washing my hair because I had a neurosurgery and my scalp is still a bit sensitive.

The hairdresser asked me what sort of hair style do I have in mind. I told her that I wanted something that will suit my face but easy to maintain. Jill told her that when you have a young child, you don’t really have much time so it’s best to go for something that’s low maintenance. I actually miss having long hair because I think it’s actually easier to care for but I think it’s more practical more me to have short hair like it very much. I don’t see much change at all. Jill said it looks nice but I think she just said that to make me feel better.
Neil came later in the afternoon to help me with my arm exercises. We talked about the comedy festival last night and I told him about how bad I felt because someone stared at me. He mentioned what the anthropologist called guilt culture versus
shame culture. I had no idea what he was on about at first. I couldn’t believe that what I’m feeling is a cultural thing. I’m sure everyone wants people to laugh with them but not laugh at them, it does not matter what culture you come from. Neil said the Asian culture is pretty much a shame culture – meaning you worry about what people think of you while the Australian culture is more of a guilt culture – meaning you don’t really care what other people think of you. After the explanation, it made more sense to me. I think that’s quite true. Maybe that’s why the designer label imitations are selling so well in Asian countries. I remember one year when I got back from overseas and was showing off my newly purchased (imitation) Gucci watch to Tim and he sneered at me. He thought it’s bad enough to buy designer label not to mention imitation. What he does not understand is why would you want to wear anything or carry anything that has the label on it that people can see. I told him that’s exactly the point – you want people to see you are wearing designer label. I guess I was brought up in a culture like that. He said one very big difference between them (him, Rosemary and Tim) and me is that if they were in my situation, they would not care what the strangers think of them very much as long as they are not doing anything wrong. I’m not sure how I can fix this if it’s so deep in my upbringing. Neil suggested psychotherapy.

We then moved on to my arm exercises. I suspect Neil was trying to compete with Gavin (to see who can push me harder). When my arm was getting tired he still asked me to do more exercises! I think it’s so nice of him to help out with the exercises so I don’t slack off too much.

7 April 2005

I didn't feel too well last night when I went to bed. I probably got something from Lillian again! Yesterday afternoon the phone rang as I was doing my walking practice. I answered and it was Tim on the phone. Apparently Lillian is unwell and the childcare called him to let him know. They told him she had a tempature of 39 C and had asked permission to give her some baby panadol. Tim made an appointment with the GP for her straight away except we have to be there by 5 pm and it was already 4.45 pm when he called. He asked me to drive to the childcare on Queensberry Street so they can meet me there. Fortunately I wasn't in the middle of cooking. I had to get my handbag and car key as quickly as possible and rushed into the car. As I was reversing, I noticed one of Tim's Polo shirt on the cloth line came with the car, too. It must be caught in the car door as I was getting in the car. I didn't have time to put it back on the cloth line so I opened the door and grabbed it. It's still damp so I just left it next to my handbag. I got to the childcare as quickly as I could. I saw Tim with Lillian outside the childcare. I saw a parking spot just before they were standing and decided to park there but Tim kept waving and directed me to go to the front. I don't know why he couldn't just walk back but there was no time to think about that so I tried to pull out into the main road but all the traffic was coming so I was going very slowly in the bike lane. I didn't notice that one car parked quite far away from the kerb and I heard a bang. I think my side mirror must have hit that car and was bent in. Fortunately, the mirror was not broken. We got to the GP on time and he said Lillian got some kind of flu but nothing to be worried about. I'm just glad that I got my driving licence back. It's time like this I really need it.

I had an appointment with Prema this morning so I got up around the same time and did my bike and mini trampoline. When it was about 11.15 am and there was no sight of Prema, I started to wonder whether I got the wrong date or time. I checked my diary and it says 11 a.m. so I called her just to see what's going on. It turned out that she thought our appointment was at 3 p.m. I told her no because I have an appointment with Judy at 3.30 p.m. She said she could get to my place by 12 pm if I wanted to. I thought I might as well. We continued with what we did last week. I told her about my meeting with John Olver and how disappointing that was. I also told her that both Tim and I think I need good quality walking practice. She agrees. I remember she mentioned before that 'practice does not make it perfect. it's perfect practice makes it perfect'. What I need is perfect practice. She went through some exercises with me - especially with tommy muscles. It's the one I really dislike - in four point kneeling. She then asked me to do some walking practice. She looked at my walking and corrected me as I went along.

I think I like Prema’s approach better. It’s fine for me to practice by myself but even with the mirror I cannot always tell what I’m doing wrong. I get much better feedback if someone can watch me and tell me what I’m doing wrong and try to fix it straight away. Otherwise, I feel I’m just reinforcing bad habit.

Judy came later in the afternoon and I told her about my bad meeting with John Olver yesterday. She was a bit concerned about me having a Botox. The first meeting I had with John, he suggested a Botox in the tib post muscle and then Gavin thought it’s the tib ant that does the inversion. When I asked John about that, he said he could inject both muscles and even soleus with Botox. I felt a bit uncomfortable that he couldn’t tell which one it is exactly. It’s no good just to say ok I’ll inject Botox in all the muscles because I know I can’t walk properly but it’s even worse if I can’t activate any muscles at all in my left leg. She thinks I should as John to explain all the possible implications of having the Botox. I think it’s a fair comment. I wished someone had explained to me prior to my operation. All I remember was I was trying to get out of having the surgery and Prof Kaye told me ‘if you don’t have an operation, you will die.’ In hindsight, if he told me this was going to happen to me after the operation, I think I would choose death instead of living like this. I don’t want to sound ungrateful but I don’t think anyone can understand or imagine what I’m going through. Tim always thinks I’m over exaggerating and I should just get over it. It’s easy for him to say but I’m sure he would not like to go out knowingly have a hole on the back of his pants. He doesn’t understand what it’s like to be stared at – the sort of stare when someone looks at you as if you are walking around with 2 heads or 3 arms.

I also told Judy that I had a pretty good session with Prema and I think she is better than Gavin in terms of correcting my walking. Judy told me she thinks Gavin has done me a lot of good. She can tell by how much my muscles have improved. She can also tell just by feeling the muscles that I haven’t work as hard this week because he is on holiday this week.

In the evening, Neil, Rosemary, Paul, Claudia, Tim and I went to the comedy festival. Tim booked some tickets to see David Callan in ‘I Spied’. The show was at the Victoria Hotel so we took a taxi there. When we got there, as I was getting off the taxi, there was a porter at the door and the way he stared at me made me feel very uncomfortable. I felt my leg was so stiff that I could hardly move. We had to walk to the foyer and it was very difficult to deal with people’s stares. If I had a gun I think I would have shot a lot of people. I just felt really angry that I think they have violated my right to go anywhere because they way they stared at me when I’m limping along. The more I worried about other people, the more tense I felt and I just couldn’t move. We waited for the others to turn up. Tim told Paul and Claudia to go and get us some seats while we waited for Neil. Rosemary said he went to get some hamburger because he didn’t have lunch or dinner. When we got to the room where the show was, Paul and Claudia saved some seats for us. We were seating in the 2nd row from the stage. I don’t think anyone would want to sit in the front row when going to a comedy just in case they get picked on. When the show started, the front row was empty so we became the first row. Rosemary went to the bathroom and when she came back the show had started already. When she opened the door, the comedian told her to come in and sit in the first row. Neil moved over next to Tim so she can sit down right next to him. The comedian asked what her name was but she didn’t tell him. He tried many times but she was so calm and just kept quiet. He picked on her and Neil for a while and then went on with the show. I think if he picked on me I would probably just burst into tears. I don’t mind people laugh with me but not laugh at me!

When we went home, I couldn’t help but thinking about how rude the porter was to stare at me like that. I went to bed and had a good cry.

6 April 2005

I had an appointment with the rehabilitation specialist A/Prof John Olver this morning. Tim agreed to accompany me to the appointment despite his busy schedule. I found out this morning that he worked till 1 a.m. so he could spare some time this morning with me at the appointment.

My appointment was at 10.30 a.m. so we dropped Lillian off at the childcare on our way to see John. It was only 10.06 a.m. when we got to Epworth. We waited for a while and then John came out but it was not my turn yet. He said there is another patient before me and she is running a bit late. I don't understand why we have to wait just because someone else is running late for her appointment. Doctors (especially rehab doctors) always get away with being late. I wonder if their accountants keep them waiting for so long when they go to see their accountants. When I was working in chartered accounting firm, I would never keep my clients waiting for more than 10 minutes. They made appointments to see me at certain time, not half an hour or an hour later. I know doctors have to see more patients but I know from MECRS experience that rehab doctors are especially notorious for being late, like Fary. I remember one of my appointments with her was at 9.30 a.m and she didn't turn up until about 9.50 a.m. and everyone there was booked to see her at 9.30 a.m.

It was about 10.45 a.m. when it was finally my turn. John came out and told us to go to his office while he goes and make a very IMPORTANT phone call. Apparently he is going to Brazil next week and he still needs to get his visa. Tim and I waited at his office for a while before he showed up a bit flustered. There must be some kind of conference in Brazil because Fary, the rehab specialist at MECRS, mentioned that she is going to Brazil next week as well. In fact, I meant to see her today at the same time but after starting my treatment at Epworth, I cancelled my appointment with her.

John asked how are things going with me. I told him that it's fine except my ankle still inverts and I wonder what is to be done. He mentioned Botox in the tibialis posterior muscle again. He said he will need to check with Cathy. Cathy? Who is Cathy? I had to remind him that my physio is Gavin, not Cathy. I began to wonder whether he has read my file. I noticed that he kept checking his watch and then his mobile rang. He said he had to answer it because of visa for Brazil etc. To be honest, I was just so pissed off I really don't care if he missed his plane. This is like Fary all over again. One thing I really hate about her is that she always leaves her mobile phone on and answer it during my appointment. I don't think they would expect their accountants keep answering their mobile phones. Tim's mobile was ringing earlier but he switched it off straight away instead of answering it. I think we should get St Peter a mobile phone somehow. Imagine when all the doctors meet him at the Pearly Gates, wouldn't it be funny if they have to wait while St Peter answers his mobile and keep them waiting. This would give them a dose of their own medicine. I know I complain a lot about doctors but it's a bit unfair to say they are all like that. I think rehab doctors are especially bad. Prof Kaye, the neurosurgeon who operated on me, on the other hand, is extremely professional. I've never seen him answering or talking on the mobile during my appointment (maybe he knows how much it cooks one's brains).

Tim asked John from his experience, how long does it take for a patient to get normal gait back after Botox. I wished he didn't ask because John's answer was something I didn't need to hear. He said they never walk normally again! Tim said surely if they train properly, they can get it back. John was so sure that because the damage is done in the brain and it's not something can be retrained. Tim asked him if there are exercises that I should do. He said the best exercise for walking is actually walking itself. Tim told him that a few years ago we used to train for ballroom dancing competitively and we know from experience that it doesn't matter how many hours we put in dancing, it's the quality that counts. They argued on this issue for a while but I was switched off. Every time I hear something negative, I just switch off completely so I don't take any in. In the end, it was decided that John will talk to Gavin about it and let me know. I told him that it's kind of urgent because Gavin told me that my private health insurance will cover 50 sessions with him. I see him twice a week so it should last about 6 months. Once I have Botox, I will need a program to work on for 12 weeks. I told him that I don't want to be in a situation that I have a Botox but then my insurance runs out and I end up have no physio. He said that's ok because I can go back to the public health system. That's fine but so far, Gavin is probably the best physio I have come across so it would be more ideal if I can have my Botox while I still have my physio there. I should be fair to say that I think Prema is actually the best physio but she does not really practice publicly. I think her approach is actually the best. She will get me to do something but would also explain the theory behind it and which muscles I should be using etc. Gavin is fine but he doesn't explain anything to me. He probably doesn't think I need to know but I think it's important for me to understand the theory as well. It's a bit like you can never be a good ballroom dancer if you only know the steps but not the techniques.

I also asked John what's the plan/program for my arm/shoulder/hand. He looked a bit puzzled. I explained to him that when I saw Martin Richardson, my othopaedics, last time, he said my shoulder subluxation problem is all healed and it's time to do some strength training. He said so far they have concentrated on my walking. I told him that's fine but would the physio be treating me upper limb as well or is that the area of another department. He told me he can refer me to see an OT if I have certain problem reaching. I told him that I don't really want to see an OT because from previous experience, OT is all about compensating or compromising. He looked at me and said sometimes I might need to compromise. I felt like telling him if I took that attitude, I would never be able to drink a cup of tea with my left hand or lift my left arm above my head.

On the way back, I was talking to Tim about it. I don't think I should give up hope yet. I think I just need good quality training. It's just like ballroom dancing, not everyone gets to A grade. In fact, very few do. It all depends on how hard they work. A lot of social dancers go dancing every night but they don't get better at it because they have not focused on the right training. The question is how do I get good quality walking training.

5 April 2005

I had to go to the self help group this morning so I asked Tim to give me a lift after dropping Lillian off at childcare. I thought about driving myself there but I was not sure whether there is parking close by. I know there is Wilson parking at MECRS but it's quite far from the pool. I need to find out if there is somewhere else I can park before I will drive there.

I got there early enough but there was someone in the pool already. I put my bag down on a chair and just about to go to the office to pay, Margaret, a physio at MECRS, saw me and said hello to me, she walked up to me to collect the money to save me from walking up there. It's very nice of her to do that. It was about 8.50 a.m. when I got in the pool. By the time I finished all the arm exercises, I looked up and it was only 9 a.m. I still had 45 minutes. I did one more round of arm exercises before I moved on to some leg exercises and the range of movement exercise (for arm) which requires the use of floats. Fiona used to help me put on the float when I needed to but now I have to do that myself. It's quite tricky when you try to put it just under your butt while you're lying in the pool. I have found an easier way to do it these days - I hold on to the rail with my right hand and bring my legs up and rest them on the rail and then I can put the float under me. When I finished all the exercises - twice!, I still had time to do more. I thought may be I could do a bit of swimming. I grabbed a noodle and put it under my tummy for support and tried to do some breast strokes. I found that despite the fact that I was using my right side more, I didn't go around in a circle like before. I was able to do a couple of laps this time. The ankle was still a big problem - it kept inverting when I was swimming and it was very uncomfortable. After the swimming, I still had time. The session finishes at 9.45 a.m. and I've decided that I should leave the pool last so I could be the last one to go to the shower. I might have to wait but at least I know I won't have to rush because everyone else should have gone by then.

When I got home, I was reading a Jamie Oliver cookbook about roasting chicken. Tim thought it would be nice to have home roast chicken so I bought a whole chicken except I'm not too sure what's the best way to roast it so I thought I should refer to a cookbook. I had to get some disposable baking trays from the top shelf of the cupboard which I couldn't reach. I got the stepladder out and tried to use it. This is the first time I've done it since the operation. I stepped on the lower step with my right foot but still couldn't reach the shelf. I think I would need to step up on the top step to reach it except the ladder is not very wide and it's not quite like going upstairs. This was more tricky than I expected. I had to hold on to the cupboard door for security and then step up a step and keep my balance. Finally, I was able to get the baking tray but coming down was even worse - I had to make sure I can step back and down with my left foot and then right foot. I'm sure this would be a very simple task for most people but for me, it was just another challenge. I knew I had to overcome my fears. I think one thing Gavin taught/pushed me is to overcome my fears and take more risk - such as ditching my walking stick (I didn't tell him that I still take it to hydro with me because my ankle inverts so much when I get out of the pool). Being an accountant, I'm naturally risk-averse. It's quite ironic this had happened to me. I remember that on many occassions, one of Tim's friends from Trinity College days, Andy, asked us to go skiing in Queenstown and I refused because I've never been and didn't want to break my leg or my neck. I wished I had gone with them if I knew this was going to happen to me.

I washed the chicken thoroughly and now I can understand why some people are vegetarians. It looks like a small baby - quite spooky in some way. After stuffing it with lemon, bay leaves and rosemary and rubbed it with salt and pepper, I put it back in the fridge. I had an appointment with Jill, from ARBIAS, at 3 pm. Now that I'm discharged from MECRS, I don't have access to social work. Not that I need any in particular but I think what Dale did with me was quite valuable - without the gradual transition, I don't think I would be able to go out anywhere these days. The truth is I still don't like going out these days. I just feel very self concious all the time and I don't enjoy myself when I feel like that. I think the feeling self concious issue has always been there. I remember when Tim and I were training for ballroom dancing many years ago, I always felt very self concious especially when there were good dancers around. I would refuse to get up and dance with Tim when there were good dancers around us because I felt so self concious and stupid. Now, I feel self concious all the time.

When Jill came in the afternoon, she looked at what has to be done with me. At first, she thought there was nothing they could help me with so she suggested to put me back on the waiting list until I need their service again. Just as we were finishing up, I mentioned that I don't go out much these days because I don't like people staring at me or asking what happened to me. She spotted that there may be some issues I need help with - coping and dealing with people's curiosity. She kept using the word 'disability' and I really don't like it but didn't say anything. It's a bit like I can say I'm fat but nobody else is allowed to. I told her that there are a few things I want to do, such as going to a hairdresser, an optometrist and shopping for clothes. She told me to make an appointment with the hairdresser and let her know so she can take me there. I think it would be good because I don't really want to answer all the questions such as what happened to me etc.

By the time she left, it was already 4.30 pm. I couldn't believe she was here for 1 1/2 hours. I put the chicken in the oven. According to the Jamie Oliver cookbook, it will take about 1 hour to cook. I'm a bit anxious because I don't know whether the chicken will be ready at our normal dinner time - 6.30 pm. When Tim picked up Lillian from childcare, he said he'd go for a run with Lillian (in the pram). I told him to take as much time as possible so by the time they come back, hopefully the chicken will be ready. When they came back, the chicken was done but Tim asked me where is the gravy. What gravy? I had no idea. It's not mentioned in the cookbook. Tim insisted that roast chicken without gravy is not real roast chicken. He referred to 'The Joy of Cooking' for ideas but in the end, decided to call Helen, his mother, for help. Helen gave him some direction over the phone. Finally, we could all sit down to have dinner! Tim commented that this is the best roast chicken he had for years, especially the gravy!

4 1/2 April 2005

(Continued from yesterday)
I had problem with the internet yesterday. I finished typing my diary and thought I could save and then publish my blog but it didn't save and I lost a lot of information. I was very upset because it took me a while to write(type) up the page and I was blaming blogger.com for it. I didn't have time to retype everything because Tim wanted to do some work. He suggested that I just publish whatever there was and continue with it today and that's just what I did. We both wondered why the internet didn't work properly. In the end, Tim found out that the internet connect was unplugged and we could only think of one person who may have done this - Lillian.

To continue from yesterday's diary -

I planned to cook Moroccan lamb for dinner. I found this recipe in a Marie Claire cookbook. I also found a recipe in the book for making mint tea. When Neil, Rosemary, Tim, Lillian and I went to this Moroccan restaurant last time, I remember we had this very nice mint tea but I didn't know how to make it. I was very glad to have found this in the cookbook. I think I'll make some mint tea as well since we are having Moroccan lamb for dinner. I felt much better after I marinated the lamb and put it back in the fridge.

In the afternoon, Rosemary came to help me with my exercises. It's very nice of her to come and help me. I know I can do the exercises by myself but it's more interesting when someone is here and it keeps me more motivated as well. After we finished with my arm exercises, she suggested that I do some walking practice - like the one Gavin got me to do. She moved the kitchen trolley and stool away to make more space for me - now I have about 30 metres of hallway to practice walking. She suggested that I do 3 or 4 lots of 15 minutes walking practice everyday and record it in my exercise book. I think that's a good idea.

After a few laps of walking, the doorbell rang. It's Neil. He is here because Rosemary drove here today and can give him a lift home but he also wanted to see my walking practice. I did a few more laps just so he could see. He is going to help me with my exercises on Friday. I'd better make sure I keep up with my exercises so my exercise book does not look too bad when he checks them.

4 April 2005

When I woke up this morning, Lillian was still asleep. She must be tired from going to the zoo yesterday. Tim took her to the zoo when I was away in the afternoon. I went to a special service at a church in Camberwell for most of the afternoon. I drove to my parents' place first. In fact, this was the first time I drove there by myself since the operation. I was a bit scared at first but the traffic on Sundays was not too bad. I'm not sure if I'm ready to deal with peak hour traffic yet.

Tim needed me to do something urgent for him. I had to set up a new file for him in MYOB first so he can use it. I was a bit annoyed that he did not give me some notice in advance. He could at least let me know on the weekend so I can find some time to do it. I told him that even if he goes to an accounting firm they will expect some notice and probably won't be able to just drop everything else and do this just for him.

After Tim and Lillian had left for childcare, I started with my exercise bike. I have now increased the time to 30 minutes. I must say it's very hard work first thing in the morning. I don't think I can go on for 30 minutes without the TV on. After the 30 minutes was finally over, I was on the mini trampoline for a little bit. Then I remembered that I haven't marinated the lamb I was going to cook tonight. I planned to cook this Morroccan [to be continued]