Monday meeting was very different. The appointment time was earlier than usual. There was different receptionist. And Dr TL was very professional.
While I was talking to him, I realised my cognitive function was very poor. We briefly chat about life with mobility obese. Then, I already started having speech problem…
He said I don’t smoke pot. No, I don’t. I don’t smoke cigarette. And I don’t drink alcohols. He wasn’t doubting my lifestyle. It just triggered his thoughts.
We chat about pot smokers. In my suburb, they are everywhere and naturally Dr TL has pot smoking patients. He explained their characteristics and how easy it is to tell them.
He also explained problems with pot smoking and how it affects our behaviour and health. He even mimicked how they speak.
I said I know it very well because I lived with one. It is not only the memory problem, their mood swing, temper and paranoia gets out of control. They brain wash each other and treat non pot smokers as their enemy. Despite they claim pot smoking makes you mellow, it gives opposite effect. They say it helps insomnia. Once again, it does opposite. They also lose libido, so there was no sex in the marriage. Scientific findings about negative effects on pot smokers were treated as conspiracy theory. Their whole life goes around smoking pot; therefore, there is no purpose or enjoyment in life.
Ex started smoking heavily when he was 13, after a while I realised his maturity has stopped at teenager. It was extremely stressful when I needed to solve problems with him and he acted as if he was my rebelling teenager son. He demanded to solve our problems with his parents, not with him… He didn’t want to do anything with them.
He was tired all the time and showed some symptoms that suggest damages in CNS. He was really disgusted with me when I was diagnosed with depression. But I could see he had more serious depression and other mental problems than me. He was in denial. Any fact that jeopardises his pot smoking lifestyle, it doesn’t exist in his mind. He hated doctors as much as he hated police.
It was my stupid mistake to marry him. I knew about his habit. I had to move once due to pot smoking housemates. Ex and his family convinced me that it was not a problem to everybody. They were rather proud that he didn’t touch hard drugs and he kept his job. He even suggested that he could quit anytime if he had to, but he liked to keep the habit as a choice… They were extremely nice to me at the beginning. Loneliness played a big part on my decision. I wanted to believe that things would get better.
I had some passionate relationships, and it was really heard when they didn’t work out. My neighbours introduced their son when I was recovering from massive heart break. Despite of enthusiasm of the parents, there was no passion between us. But I thought no passion could lead to a long stable relationship.
I slept in a car on the wedding eve due to his murderous temper. And I let his mother to convince me it was too late to cancel the wedding and it was just a wedding jitter.
I was naive and too trusting. I will not make the same mistake again. I’ve leant the lesson hard way.
Dr TL asked how long I was with ex. I think it was about 7 years. Then, he asked, how long I have been separated from him. It would be almost 3 years. Before that, I had separated bed rooms for about a year.
He commented that I knew him in my 20’s. No, I knew him only recently. He knows my age. Then, he calculated and said from early 30’s. When he said that, I realised 20’s wasn’t too far away. It’s amazing how time flies and how concept of time and period be twisted.
The talk about ex brought up bad memories and feeling of frustrations.
Dr TL said I shouldn’t go out with pot smokers again. I answered firmly that it would not happen. I will stay away from pot smokers, not even as a friend. I’ve leant my lesson.
Then, he asked if I heard more about XMRV. There are lots of questions and lots of issues, such as possibility of blood test, treatments and so on. He thinks only researchers would do blood tests for research purpose now. At the moment, there is not much point of testing. As for the possibility of treatment with cocktail of HIV, cancer and anti-inflammatory medicines, he said it makes sense as it is retrovirus.
We talked about change in public attitude and how it helps us for further research. Now that medical community takes us seriously, it will be a great advantage. We also mentioned that it will be a while until practical help would be available for us.
He told me that it is a hot field for researchers now. For people who are doing PhD or Masters Degree, choosing a new topic for thesis could shorten their time to complete the degree. If they chose an old topic, it would take 4 years to finish the degree. But if they chose a new topic, such as XMRV, it would only take 2 years. So, at least, I can expect lots of research findings coming out regarding to XMRV and ME/CFS. It is a positive thing.
Then, I asked him if I could have B12 injection more often than once a month. He said that shouldn’t be a problem as he is giving weekly injection to other patient. He checked the possible adverse reaction just in case. Once he was satisfied, he gave me prescription. I’m guessing I can have a weekly injection now.
I asked if he would talk to other doctors. He didn’t understand my question. Sometimes, I receive advice from people with ME/CFS knowledgeable doctors to have my doctor talk to theirs. I didn’t feel Dr TL would do that. As each case is different, specialists cannot really give specific advice unless they see me in person. I also feel what he is giving me wouldn’t be any different from ME/CFS specialist would. Although he is not practising as ME/CFS specialist, he has good knowledge and passion about it. So, I needed to ask Dr TL how he feels about it.
He said he would refer his patients to the known ME/CFS specialists and he actually has. One is in NSW and the other is in Melbourne. Without mentioning their names, I knew who he was talking about. But the feedback weren’t really convincing, so he is not pro-actively referring. That was exactly what I thought. I really feel I’m receiving the best care possible from Dr TL.
He has even corresponded with ME/CFS doctor in Melbourne, and found out what he is doing is nothing different from what Dr TL is doing. From now on, when someone kindly suggests having Dr TL speak to their doctor, I know what I can say.
I’m afraid that Dr TL took the question as a sign of my doubt. I felt I disappointed him. I wish I could have told him that I still trust him and am confident that he is giving the best possible care to make me better. And he doesn’t need to become ME/CFS specialist to help us. I’m proud of him that he looks after his patients regardless of the name of diagnosis and he has very good knowledge in each illness/condition and beyond, including ME/CFS…
It seems like the appointment will be once a week from now…
I’m afraid I’m depending too much on him. I really should have more friends who understand me and spend time with me regularly. However, the reality that I have no chance of making new friend unless I get better and able to go out and meet people is depressing. I’m getting more and more lonely and depressed.
Dr Klimas said in her video message that this is certainly not the time to give up. Although I agree with her, the thoughts of existing like this for many more years give some questions… Can I keep going? If I can, for how long?
Posted in Doctors, ME/CFS Tagged: B12 Injection, XMRV