It’s been an intense couple of weeks that’s for sure!
So after taking it easy for a few months it’s time for me to start putting my toes back in the waters of Enabling Good Lives and being more active again in taking control of what I can control and try to let go of the rest. Which is hard, I seem to be “hard wired” to just get in there and make it happen. I also have a lot going on with the “medical” side of life coming up so I’m prioritizing what I do and how much I take on this year.
Disclaimer: All thoughts and opinions shared in this blog are my opinion and written from a personal experience. My opinions do not represent any organisation that I collaborate or work with.
Although I eased into the first couple of weeks of the year things got somewhat busy! I have to remember that recovery takes time and as much as I want to be back at full force, that just isn’t possible right now. Fatigue seems to hit from no-where at the moment and I am having to rest a lot. Although I really believe in the work that I do and I want to see Enabling Good Lives (EGL) succeed; I have to put myself, my health and my whanau first. If we are not well, I cannot put my best quality and attention into the work. Which means I have to really think about what I can take on, how much energy I have and then decide where best to focus that energy. This is particularly important with how stressful interacting with the medical system can be. Even moreso when you are trying to follow a feedback/complainants process with your medical center and feeling like its getting no-where. Although I am grateful to have a GP, I would move practices if their were other, better options available, however with a nation-wide shortage of GPs changing practices is not currently an option.
We had the first meeting of the year (1.5 days) for National Enabling Good Lives Leadership (NEGL) in the 3rd week of January in Wellington. Although I was appointed as a Co-Chair of this group in July I have made the decision to stand down from this role. It’s going to be a big year for NEGL with the Mana Whaikaha prototype due to wind up at the end of June and hoping to move towards further system transformation and keeping this in mind with everything else in my life going on I felt standing down from Co-Chair was the best decision for both myself and the team. I just don’t feel that I have it in me to take on such a role at this time and give the role the due consideration, time and dedication that it requires.
As part of moving forward but still wanting to be involved, I have arranged to have someone along with me on these trips at the moment; to support me both emotionally and to deal with all the little extras that pop up while travelling. Due to some of the experiences with urban travel I have had over the last couple of years this type of travel currently causes me some anxiety and to have someone there to help with the logistics is a huge relief. A huge shout out once again to Wairemana for stepping up and providing tautoko (support) for me to participate in a way that is more manageable for me right now.
The first half day of the hui (meeting) was a reflective session where we were open and upfront about how we felt the last year has gone. I will acknowledge that from my perspective (I can’t speak for the rest of the team) that although the prototype has had some good results for individual people, the systemic change we would have liked to have seen has not been apparent. 2020 is going to be a big year and we have to step up and put pressure on government to see real system transformation and not just “tweaking” the current systems as we move forward. There were some tense discussions but they were important discussions to be had. As a leadership group we need to have those “robust” conversations to really test our thoughts before we make any advice or direction. I know that NEGL are prepared to work hard to make that happen but I encourage all those in the disabled community to also use their voices; talk to each other, talk to officials, write or present submissions, turn up to hui and ask the tough questions of candidates, MPs and organisations you work for/with. The more of us speaking up, the louder our collective voice becomes.
I would like to thank NEGL for the warm welcome back and I will do the best I can to continue to contribute to the process to drive forward the vision of EGL: “In the future, disabled children and adults and their families will have greater choice and control over their supports and lives, and make more use of natural and universally available supports.” Thank you to Jade Farrar as chair for facilitating. I hope you all enjoyed a break from the monotony of the meetings with a bit of “outside the box” thinking with the activity I rolled in with!
By the time we headed towards home on day 2, we had met with James Poskitt from Ministry of Health (MoH), a project team, we had reflected on the last 12 months and had the bones of a Work Plan for NEGL 2020. All in all it was a positive 2 days, if not exhausting.
Taking any trip as a disabled person usually means dealing with some form of inaccessibility somewhere along your travels. This trip to Wellington was no exception. After the first half day of meeting, we drove the block a couple of times to find the hotel, then navigate the construction in the car-parking building, then the lack of a mobility parking space. We were then faced with a long ramp to get into the hotel and reception; the room itself was pretty good but the real kicker for me was not being able to independently take Assistance Dogs NZ (ADNZ) Ben out for toileting duties. I am pretty mobile in my wheelchair (which I had taken on this trip) but when I cannot push myself up a hill you know its going to be problematic. I am so so thankful for Wairemana coming with me on this trip. Wai was amazing, organizing things in general for me to take off some of the stress with logistics and taking over toileting duties for ADNZ Ben.
But wait! It didn’t quite end there… Headed to the hui on day 2; first off the temporary wheelchair ramp to the car-park was blocked by a trailer. Then due to the construction and bad signage we did a couple of laps of the building before making our way to a service station to put some air in my wheelchair tires as they were a little low. Wai had got one of the attendants to come out to give us a hand, he was looking a little annoyed that he was even coming out to help someone. The attendant took one look at the wheelchair tires and said “I can’t do those?”… I asked “Why not?” He replied with “They’ll explode”. “No they won’t, they’re high pressure tires” I replied. “Are you sure?” he asked, looking at me sideways. “They are high pressure tires, they will take 110psi”. He looked at me and said “are you sure, I don’t think that can be right. I take no responsibility if they explode”. I reassured him that they would not explode, and he added some air, “that’s as full as I’m prepared to get them”. They weren’t 100% but at least they had more air than when we arrived!
So after all of that and one and half days of meetings I was pleased to head homeward. We had thought of calling into Otaki to have a go on an Omeo on the way to Wellington but the timing didn’t work out, so we took the opportunity to stop on the way home. This was such an awesome way to finish the trip and blow off some steam. The Omeo is an amazing bit of kit, I can’t wait to have a burn when I am not absolutely knackered and have a bit more oomph to really push my limits, learn some better technique and really see what I can do in one! A huge thanks to Maatua Marcus, Whaea Paula and Pedro for making the time to let me have a play!
I pretty much slept for the next 3 days on arriving home from this trip. Around this time, I received a letter from Mid-Central District Health board to say that I had an appointment with a Neurologist on the 7th of February. I am glad I haven’t had a lot of lead in for this appointment. This was the referral that was declined in August that was breaking point for me; if there was a long led in time, I could see myself getting more and more wound up as it got closer. Honestly I am nervous about the process, the tests (I’m not good with needles) and possible results. But after 20 years of not actually having a possible/probable or definitive diagnosis, therefore no supports; I am kind of glad to finally get the ball rolling on this. It’s a relief in some ways to be possibly be finding out what is going on with my body rather than having the attitude of “I know my body is different, no-one is going to help me so I’ll just get on with life the best I can.” The results will be what they will be and we will deal with that as it happens. All I can do is live life on life’s terms and continue to do my best, manage my energy the best I can and strive towards thriving once again.