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Been a long time since I posted

Posted Jun 05 2011 4:27am

I have not posted for a long time, but felt that the time was right to blog again.

Last year I managed to get myself off the morphine that I was taking every day. I thought it was helping my pain until Saturday when I did not take it. I woke up on the Sunday feeling like I had flu. That was when it hit me that I could not just give up these strong painkillers I was suffering withdrawal. So over the space of a few months I gradually reduced the medication and am now free from addictive painkillers. It made a massive difference to my outlook on life. After I had given up I had an appointment with my APS specialist. She congratulated me on being able to come off the morphine and then dropped the bombshell that morphine is ineffective for joint pain.

Basically I had been doped on strong painkillers that were not doing anything for me!

I have also set up a charity in my home town. We provide food parcels to people who are having a financial crisis. When I first suggested to people that it would be a good idea there were two opinions. One mainly from those who worked in social services and other support agencies said wonderful we need that. The other view was that we live in what is seen as an affluent area so surely no one needed food parcels. Well now we are up and running I can assure local people that even in affluent areas there is a need.

A lot of time over the last 4 years has been devoted to my studies, and got my degree at the end of last year. I had vowed that I would not continue my studies but I have just signed up for another course to start in October.

Studying and helping others has really helped me to cope with my health problems. I am still in the same amount of pain that I was in when I posted before but now I see it as part of life. Now it is a sign that I have done something and not just sat in my chair feeling sad. There are days when I would class the pain as agony. Last night was one of those times, but eventually it does calm down.

I also had surgery last year. The surgeon came to see me before the op and told me what he was going to do and what treatment I would get post op. The post op care involved medication that would have been dangerous for me. The surgeon had either not read my notes or did not understand lupus and APS. I stood up for myself and told him that he could not do what he suggested. Much to my surprise he listened and changed the operation that he did.

The nurses all commented that I obviously knew a lot about my health conditions and they all said they were impressed. But the way I see it is that many doctors do not know about APS and so I need to know to keep myself as well as possible.

People still comment that I look so well. Sometimes I tell them that when lupus is bad you often have a rosy glow to your face and look well, this is actually not a good sign, but often I just do not bother telling people how I feel. I learnt very early on that many people ask ‘How are you’ but often they do not really want to know. This lesson was learnt when I was asked how I was and when I replied ‘Actually I feel really rough and am in a lot of pain’ the other person said ‘good good’. She was not listening, not because she did not care, but because she did not understand.

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