Ever onward....

I had a discussion with a parastatal/crown entity last week that left me feeling buoyant and more focused regarding the direction that tākiri should go towards. I also got co-opted into a focus group dealing with disabled peoples employment issues that sounds quite exciting too, so after my first meeting on the 15th of Feb I will report back on all that that entails and promises…..

All throughout my long career and association with the performing arts industry, I never gave much thought to future changes in career path as I loved working in the performing arts and events industry and very naively thought that it would continue ad-infinitum. Now that I can no longer be part of that industry, and having to relearn half-forgotten skills and learn some new skills in order to make a living and have some purpose, I am facing the same quandary that I guess many other people face much earlier in their productive lives – I don’t like (most of) the work I do! Don’t get me wrong, I LOVE tākiri and creating jewellery plus plotting and planning and talking to people etc. Its some of the other work I have been forced to do that I dislike and I guess that is exactly what others go through earlier on in their careers so I was very spoilt living and working in an industry that I utterly loved for so long, although I have to say that when I started getting sick it dropped me faster than you would a hot potato….

It is evidently summer here in NZ and I am sitting looking out the window at horizontal rain being driven by howling wind (140kmph) Wellington has ‘weather’ and as it sits on the edge of a narrow strait of water between an ocean and a sea, is prone to very sudden and extreme changes in weather. Last week I left home in howling wind with pelting rain and 10 minutes later and 15km away people were walking around in short-sleeved shirts and basking in the sun while I stomped around dressed in heavy weather gear…

Being sick presents many varied obstacles and problems. There is the obvious one of challenging mobility that necessitates great planning and scheming whenever I need to go anywhere, plus I do get fatigued more so than is normal and although I reset after a bit of rest, I need to take this into consideration when having to do anything active. Those are the obvious challenges and they are pretty easily accommodated with enough foresight, what is more difficult to manage are relationships and the effects all of this has on those close to you. What a disability does to your family life is utterly horrendous. Suddenly one partner is very sick with associated challenges and the rest of the family have to cope with this whether they like it or not. Young children have to manage having one parent who cant be like other parents at school, no matter how accommodating the school is, and the other partner suddenly has to step up and be the main bread winner. There are a host of other issues that the family has to deal with associated with coping with the disability and none of them are ‘fair’ on the unaffected members of the family which puts great strain on the relationships in the family…

Today I was asked if I knew of a Dr in Wellington who deals with ms on a regular basis, no I don’t. Wish there was one though! When I go to a Dr now, I am not too surprised that when we start to talk about ms that they turn to Google for help. When you have a disease like ms soon you become more knowledgable about it than most Dr’s are. That is not because I am such a clever-pants, but because with there being so many different ailments/problems/illnesses for Dr’s to know about, one as relatively uncommon as ms gets short changed quite often. I argued with my GP about being prescribed LDN (low dose naltrexone) a drug that is normally used to help cure heroin addiction but which has had fairly radical effects on ms, by taking him pages I had downloaded from the web. He did check to see the side effects (none) before giving it to me, but didn’t laugh when I told him that at least now I could take heroin too…