12 September 2006

First update in over a month. I had no idea that I haven't updated my diary for so long until I looked up when was my last diary entry. I guess I have been EXTREMELY busy with rehab and also work. Three or four weeks ago I had about 20 hours of training - including physio sessions at Epworth. I was completetly wracked by the end of the week. In fact, I was so tired that I fell over when I was trying to put a 20kg plate on the leg press at the gym and twisted my ankle.

I have always found it hard to lift up the 20kg plate and put it on the machine on my own until a few weeks ago. I think my wrists are getting stronger from boxing so I started to manage putting those big plates on the machine on my own a few weeks ago. I think I over estimated myself on that day. I managed to put one 20kg plate on one side but when I was trying to put another 20kg plate on the other side, my wrist gave in and I just couldn't hold it. It was very close - only about 1/2 inch away. I decided to drop the plate to the floor and tried another plate. I can't pick it up once it's on the floor because I had to bend over and lift it which is a lot harder to do than lifting it off the weight rack. I tried another one and another one... Finally, I tried the last one on the rack but I think I tried too hard and my ankle started inverting and I lost my balance and fell over. I still had the 20kg plate in my arms when I fell. I was totally embarrassed since the gym was quite crowded. I was lucky that the plate didn't land on top of me. I got up andleft the plate lying on the floor. To my surprise, nobody seemed to have noticed. I looked around and nobody stopped to look and nobody came over to see if I was ok. I think maybe people didn't want to embarrass me. A gym staff came over later to see if I was ok. I think he must have seen it from the monitor.

I didn't realise the fall actually twisted my ankle until I was walking home. My foot was really hurting. Every step I took caused pain. Fortunately, I had an appointment with Gavin on that day so he could have a look at my ankle. When I got to physio at Epworth, I told Gavin I had a little accident and asked him to check my ankle for me. He looked at it and said there was no swelling and I just strained the muscle a bit and there is no real damage done. He said if I was a footballer, the coach would have told me to continue playing because there is not much damage done.

One thing I forgot to mention previously is that I think my interests have changed since the operation. The people I used to get along well seem like different people now. I notice this more recently that sometimes I feel I have nothing in common with my friends at work. There is a group of us and we always have lunch together. They visited me almost every week when I was in hospital. I think we used to have so much to talk about but now I just feel the things they're interested in don't interest me anymore. I think I have also lost interests in fashion. I guess it's quite easy when you can only wear runners. There is no hassel to think about matching shoes and handbags. I find it quite funny when people tell me that forgot their ID or walltes etc because they change their handbags to match their shoes. Well, I guess I don't have that problem anymore. I often reflect on this on my way to physio at Epworth. The hospital is right in the centre of Bridge Road - a place full of fashion factory outlets and boutiques. I think in the past, I probably wouldn't have made it to my appointment because I'd be so distracted by all the shops. Now I can drive pass the shops and wouldn't even blink.

Another thing to update on is I have been getting a lot of help from Unna, a girl who works at the gym that I go to. She used to be an exercise physiologist working in rehab so she had some experience with people like me. She found out about me through Erica, the Cardio Box instructor on Saturday. She and Erica used to work together and apparently Erica told her about me. She approached me at the gym one day. At first, I thought she was just another annoying person who wanted to use the elliptical machine I was on but later found out that she actually works there. She told me maybe there are some exercises she can show me just to compliment my current gym program. I took up the offer and have been seeing her for a few weeks now. It is very nice of her to help me given her background in neuro rehab at Caulfiled Medical Centre.

I have to apologise to my readers that this diary entry seems a bit patchy. I first started wrting it on 26 August but never got around to finish until now. Tim has gone to the U.S. for 10 days and Lillian is at my parents' place. I suddenly seem to have a lot more time. Also, I normally see Prema around now but today she cancelled our appointment because she is sick. I thought I'd better use this block of time to pudate my diary or else I'll never get it done.

I had an appointment with my rehab specialist, John Olver, last Wednesday. Gavin is still away in Europe but he has arranged for me to go to the running group on Wednesdays. It works out better for me to go to physio or running group first before I see John because the hospital charges my private health insurance but pays for my parking at the hospital carpark. Otherwise, parking is a real headache in that area. I told John that I was a bit concerned that the occupational physician thought I may never be able to return to full time work because of fatique issues. I told him that it's ok to work part time for now because I get time to do my rehab (I was tempted to mention my 'addictions' as well but thought it'd be unwise to tell him) but eventually I'd like to go back to full time. He basically started the negative prognosis again and told me that the brain damage is permanent and irreversable so he didn't think I'll ever overcome the fique problem to work full time again. Or, if I can manage working full time, I'd be so tired after work and I wouldn't be able to enjoy family life. The second point may be valid but the fatique comment is totally bullshit. I didn't want to argue with him because I still need him to advocate for me. I want to be able to delay increasing my working hours as long as possible so I can concentrate on my rehab. I'm really upset about the fatique issue because this is exactly what I feel about how the specialists don't tell their patients about - that they can overcome fatique but they will have to work their butt off to improve their fitness level to achieve that. All they tell you is 'you can never do ...etc' which is quite flawed. I hate to think how many people actually believed that and didn't bother working hard and it really became self fufilling prophecy. He also told me that many people who have ABI can never run and you can only tell them that they(the doctors) can help them walk better but they will never run. I was schocked to hear that but he said again that many of them just can never run. He added ' although, Gavin doesn't think that some of them can't run.. he thinks that they all can run...'. I'm glad that Gavin is not as negative because can you imagine how many patients would suffer if he is as negative as the doctors. I think with him, it's usually the opposite. He won't allow his patients saying ' I can't' do something. Every time he asked me to do something and if I said I can't, I'd get into trouble. He told me I should say ' I find that challenging' but I'm not allowed to say ' I can't'. There was a stage that he said every time I say 'I can't' I'll have to buy him a Freddo Frog. I don't think I say that anymore or even think that way ever since I found my new 'addiction'. Compared with the things I do in the group fitness classes, the stuff I do in physio seems a lot easier. Also, I actually enjoy being challenged these days. I think my new found 'addiction' has also made me tougher. Tim thinks so, too.

I wonder if there is any research done on brain injuries and fatique. Doctors always think fatique is a chronic problem for people who have had brain injuries but from my personal experience I found that my endurance improves as my fitness improves and fatique semms less of an issue now. Tuesdays are usually my hardest working day - I go to BodyPump class first thing in the morning and then gym session after the class and then I'd go home for a quick shower and lunch and then back to Cardio Box and then Fitball class. I usually see Prema after the Fitball class and then back to the sports centre for BodyBalance class. This means between 6 to 8 hours of training on this day. I found it extremely hard when I first started doing this but now I think I'm more used to it. I said to Tim many times that sometimes I dread Tuesdays more than I dread going to work because compare to what I do on Tuesdays, work is actually quite easy.

I remember asking Gavin last June or July on what do I need to do to get better. I remember him telling me that I'll need to work at the gym very hard until I'm absoultely knackered then I'll get better. I didn't really understand what he meant back then but I think now I start to appreciate that. Basically, you need to work yourself to the ground and as your fitness level improves it takes a lot more to work yourself to the ground so you will need to increase the intensity more.

From this Thursday, I'll have to work at the office. I have been working on Thursdays from home but the occupational physician said I should start to work at the office and also gradually increasing the hours on Thursdays to 5 hours. I think I should be able to handle that. It's just a bit of hassel to rearrange my massage appointments with Judy since she has been doing home visits until now. I guess I shouldn't complain because I have had it pretty good on Thursdays. I would go to the gym and class first before coming home and logging on and work from home for a few hours.

10 August 2006

I had my appointment with Bernadette,the occupational physician yesterday morning. I have been feeling really anxious about this meeting for weeks and as the time got closer, I was getting more and more anxious. I woke up at around 4 am yestderday morning and just couldn't sleep. I know my work hours will definitely change but I just don't know how much change there will be.

I got up at 5.30 a.m., went to the gym at 6.30 a.m. and then my usual pilates class at 7.30 a.m. I was trying to do as much exercise as possible and hopeing that exercises will block my worries for a while.

I decided to dress up a bit so even though I have to wear runners, at least I look professional when people don't look down at my feet. I know the occupational physician commented in my report last time describing me as 'neat looking'. I guess presentation is important in this kind of meetings. I packed my lunch and some gym clothes for physio as well because I didn't know how long this would take and I had to go to Epworth for physio by 1.30 p.m.

This time, she didn't keep me waiting for too long like last time. I was surprised to find that John Olver, the rehab specialist from Epworth actually replied to her queries. Gavin told me John wouldn't write a report without asking him first but I guess he is wrong this time. I don't know what he wrote but I thought it's a bit inappropriate for me to ask to see the letter.

She asked me how have I been at work and how do I feel about my work hours. I couldn't tell her I'm still tired or I think it will really jepordise my postition at work so I told her I found it's good to have a routine and I'm getting more used to it now so I'm coping better. She pointed out that I work 4 to 5 hours at the office on Mondays and 2 to 3 hours at home on Thursdays. I told her that's right but I have been pushing myself to work 5 hours on Mondays and 3 hours on Thursdays because there is no point in going backwards. She said she knows I'm always trying to be an achiever. I don't know whether I was setting the right tone there but I thought it's probably better to project the image that I'm trying to work more hours. I told her that my goal is to get back to full time work eventually. She said based on the prognosis, it's most unlikely that I will be able to do that because of fatique. I told her prognosis is only based on statistics but everyone is different so it may not be true. I also told her that based on my own rehab experience, initially, they told me I may never be able to walk again or lift my left arm above my head but that has been proven wrong. It all depends on how hard you work. I don't think she likes that at all. Being a doctor, I guess she likes to tell people that the prognosis are always based on their 'expert experience' and therefore, they are never wrong. I really hated it when she kept saying most of the recoveries happen withinthe first 2 years and I have already past the 2 years mark so it's unlikely there will be significant recovery. There was no point in upsetting her or arguing with her because my aim is to delay working more hours as long as I can so I can have time to do my rehab. Isnt' it so wrong for the doctors to think that no significant recovery can occur after 2 years? I think I'm improving all the time and I know Gavin doesn't believe in that theory either.

She asked me how did I find the 5 hours work on Mondays. I told her I'm coping ok with that. She then asked me what do I normally do after work when I get home. I didn't want to tell her my normal routine when I get home on Monday is to prepare a 3 course meal and then go to 2 aerobics classes and be back in time to watch 'Desparate Housewives'. I told her I normally have a bit of rest and then I'd do chores. She asked me what kind of chores. I told her ' oh, just preparing some simple dinner'. I can never tell her what I really do on the Mondays such as getting up at 5.30 a.m. and go to the gym before I go to work and when I come home, I would spend a few hours preparing dinner before going to my classes.

She told me I will have to work at the office on Thursdays. I knew this was going to happen anyway but I was trying to pick a different day so I can keep Thursdays to see my massage therapist, Judy. It's going to be hard without my weekly massage. Unfortunately, it's really not up to me. I told her I might work on Tuesdays but based on her 'expert' opinion, I should stick to the Thursdays. She suggested that I work 4 hours at the office on Thursdays but I mangaged to pursuade her that I should start from 2 hours for a few weeks first. I'm not even sure if she will definitely recommend this in her report or will she stick to her original suggestion. I have to see her report to be sure. When I saw her last time, she said she was goint to suggest that I should be able to start work later to avoid peak hour traffic but the dumb bitch (excuse my language) didn't and she commented that I was very vague with certain dates. I'm upset because I don't think I was vague at all and it's just that she had to aplly her 'expert''common' knowledge that my memory was affected by the brain injury. I have decided that I really hate doctor - most doctors at least. Neurosurgeons are ok. They are not as dumb as the rehab specialists or occupational physicians.
Anyway, enough complaints. I was told that I will go back to see her again in November.

When I told Gavin about the news, he thought it's good news if she thinks I may never go back full time. He thought if that's the case then the pressure is off me. I was quite upset and told him off. I guess I have always been ambitious so the thought of not working full time sort of upset me. I know I'm the sort of person that always want my cake and eat it too.

I have to mentin it in the blog because every time I see many patients at Epworth, it just makes me realise that I'm so lucky that my arm doesn't look like theirs. I'm really very very grateful for Neil's and Rosemary's help. I think it's a shame that arms are often neglected in rehab.

I went to a Fitball class this morning. I met the instructor many weeks ago in Cardio Box class. She asked me what happened to my foot when she saw me wearing an ankle brace. I told her I had a stroke. I found out that she teaches Tai Box and fitball. She suggested that I try out the fitball class and knowing that I have to go to the office on Thursdays in future, I thought I should at least try it out when I still can. I must say it's one of the hardest classes I have ever been. After that embarrassing incient in Pilates class, I have been keeping away from those fitballs. This is the first time I tried since that day. I still had a lot of difficultiles staying balanced on the ball on my stomach but at least this time I didn't bounce off the ball.

I love going to different classes because I'm acquiring new skills all the time. Another thing that Bernadette mentioned is that I may find it difficult to learn new things.I suspect she is referring to my mental capacity but I know with pysical activities it may take me longer to learn than normal people but I know I can improve.

4 August 2006

I went to Epworth for physio this morning. I decided to write up another blog because I was able to clarify some queries I had with Gavin.

I always wonder why I find walking continuously at a certain speed very hard. I told Gavin that one day on my way to the gym I was trying to follow a girl in front of me walking. She was walking at a constant pace and I thought if I can just keep up with her, it's porbably a bit like walking on the treadmill and it may be a good practice for me. I started about 5 metres behind her but after a while I just couldn't keep up. I'm sure she was walking at a constant pace but I just couldn't keep up walking at that pace and eventually she was further and further away ahead of me. I asked Gavin why that's the case. Why is it that I can't keep up. He told me it's to do with endurance and it's the same why some guys can't go running outdoors because they don't have the endurance yet. I asked him how to build up the endurance and he told me everything that I do in physio will help. And also things like elliptical and step machine at the gym. I guess I just need to do a lot more of those at the gym then.

Another question I had was whether in rehab it's harder to treat lower limbs than upper limbs. I told him that I didn't have much formal treatment with my upper limb but it seems to me that my upper limb is recovering quite well comparing to the leg. He said no, it's usually the opposite. He said often it's much harder to treat the arm than the leg and I'm lucky that my arm is not severely affected like my leg. I didn't want to argue with him but I didn't think you can be affected differently in the leg and the arm if you have dense hemiplegia. I suspect the difference was I had early intervention on the arm with repetitive practice - thanks to the help of Neil and Rosemary. The leg was being treated when I was at MECRS but the intensity was not nearly enough and there was no strength training introduced at all so I'm still paying the price of large muscle groups severely weakened by the paralysis. I think Mary Galea is absoultely right in saying that the arms are often neglected in rehab. I didn't have much of treatment in the arm when I was at MECRS. They spent all the time on the leg. I guess that's the quickest way of getting the patients out of the hospital. I'm still upset by the fact that they wouldn't let me walk around ward even the day before I was discharged because they were worried that I might fall over. I guess their mentality is as long as i don't fall over at the hospital, it's not their problem. It's ok for patients to fall at home or anywhere else but the hospital.

I had often wondered if I would have recovered better had I gone to a private hospital like Epworth in the first place. I think Gavin is an excellent physio who has a very positive attitude. However, when I looked at most of his other patients, I think I might have the best of both public and private system. I think it's possible that I would have recovered better in my walking and running if I were there from day 1 but definitely not with the arm though. The rehab system is a bit strange because upper limb is often classified as belonging to the OT department and not really in the area of physio. Maybe that's why it's often neglected in rehab.

I remember when I first met Mary Galea at my local church, she mentioned to Tim that they want to do another research on whether early treatment is crucial or the timing of treatment doesn't matter. I see her at the church sometimes and I'm always very tempted to tell her that from my own experience I think the timing of treatment is crucial because when I look at many guys in the running group that they can all run faster and better than I do but their affected arms all look a bit funny.

3 August 2006

It's a terrible feeling to count down the number of days before my appointment with the occupational physician next Wednesday. I'm really nervous about seeing her because I know this time I cannot say that I'm really fatiqued that I can't increase my work hours or I'll really be in trouble. I think because I know I don't have all that much time left to do my rehab, I'm working harder than ever.

It's really dangerous to get the 'can't be bothers'. I missed out the aerobics class once because I had to see Judy, the massage therapist, at her clinic. Ever since then, I have been missing the classes every Monday night. I knew this was goingf to happen that's why I have treated these classes like appointments or real classes/lectures so i don't miss them. Once you miss a session, it's so easy just to miss them all. After all, it takes a lot of discipline to attend them consistently.

Last Tuesday, I had to walk back and forth between gym and home 4 times so this time I was better prepared. I brought my towels for the shower and even packed a sandwich for lunch. I went to BodyPump class at 7.30 am and then went straight to the gym for a couple of hours. I had a shower at the changeroom after gym. It was the first time I had a shower there. I normally go home for shower since we live only 10 minutes away from the gym. I have to admit that I took the easy way out by using the disabled bathroom. It's like a mini bathroom on its own - with toilet and shower and a bench. I guess I could use the normal shower but it just means I would have to leave my clothes and shoes outside and then I will have to walk from the shower to the bench barefeet. I sometimes wonder if there are actually any really disabled people using the bathroom there because I found the cord was too short and if the person was in wheekchair, she wouldn't be able to take a proper shower anyway. It makes you wonder whether the disabled facilities were designed in consultation with OTs.

After having a shower, I still had plenty of time before the cardio box class. I was able to have a little break and have some lunch before the class. I think it was good that I did the boxing short course because I think I'm getting a better workout when I have better technique. Now, I feel that even though I don't jog or hop around in the class, I can still get a good cardio workout by just punching the bags really hard and move around a bit.

I had to rush back home right after the class for my appointment with Prema. When I got home, she was already waiting outside. My appointment with her was 1.15 pm but my class finished at about 1.05 pm. I knew she only just got there because I was walking behind her except I was too far away to catch up.

I went back to the gym for the BodyBalance class in the evening. That concluded my 3 classes, 1 gym session and 1 physio session for the day. I was exhausted by the end of it but I felt it was necessary since I won't have much time for it once my work hours increase again.

I have noticed that as I'm getting stronger and better physically, I tend to forget how bad I was and have become less sympathetic of peopole in my situation. I know it's very bad of me to do that. That's the reason why I feel I should mention it in the blog so I don't ever forget where I came from. When I went to physio yeasterday afternoon, I was glad to see that Gavin's face was a bit better. The scars were hardly visible. I didn't really look whether he had his teeth fixed just in case if he didn't I might start laughing again. When he was taping my ankle, he was tellingt another guy to do some pushups. That guy hesitated and asked if it's ok to do pushups on his knees. Gavin said ' yes, ok. but you have to put the dess on'. The guy didn't know what he was talking about and just grabbed something from the physio bed and asked if that's it. Gavin said ' no, the dress... if you want to do girls pushups, you've got to put the dress on...'. I cracked up laughing. I thought it's so funny but that guy was very embarrassed. I feel a bit guilty to laugh at someone like that. But I guess at least I wasn't the one who made those comments.