2020 seems to have flown by, I know that it’s been a year none of us will forget. Globally Covid has been a bit of a shit-show; I am thankful and grateful to be in New Zealand and the decisions our leadership has made. On a personal level was a year of re-examining what is important to me and prioritizing, a year of accessing the medical and disability services and support that would have been beneficial over the last two decades. I guess like many, it’s been a year of uncertainty, confusion and a rapidly changing “normal”.
In some ways 2020 was my year to prepare to “build back better”, 2019 had not ended on the best note so I was at a pretty low point when Covid19 hit. If I am honest having our country locked down early on was a good thing for me as it forced me to take a bit more time to heal and recover from my breakdown in Sept 2019. I now look back and realize that I was trying to “get back to it” as quickly as I could which is not always the best thing to be doing.
Over the year my focus has been on my rehabilitation and picking up some of the Enabling Good Lives (EGL) work with the Mid-Central Leadership Group. Although I enjoyed some aspects of the National Leadership Group, stepping down was the right decision to make, both personally and for EGL as a whole. I had taken a lot of time out of the National Space, so it was better that others take the role that can give the role the attention and focus that is needed.
The Mid-Central Regional Leadership Group has always indicated that services that surround a disabled person (DHB, Medical Centers, WINZ, PNCC etc) need sufficient training and education on the EGL Vision and Principles. So I am currently putting together a bit of a project around Sector Engagement and Education. The work will be done in “teams” which have a specific part of the wider disability sector and general community to work with. We are hoping to roll this out within the next couple of months; with a coordinated, forward thinking approach rather than a scatter gun, reactive response which has often happened due to the nature of the prototype. Some of this work started due to me sorting out my own issues within both the Mid-Central DHB and shortly my medical center.
This included presenting my “Consumer Story” to the Health and Disability Committee at the DHB. I was asked to present some of the circumstances that contributed to my breakdown and to show the awesome achievements I have made since I have been able to access long term rehabilitation. During which I was able to reinforce the fact that EGL is here, and has been for awhile; I put the onus on this committee and the DHB to step up and actually put the principles of EGL into practice on the ground. I also ended up doing an “International Day of Disabilities” (Dec 3) talk for the Enable staff about the impact that EGL has had on my life; I had turned up to support and listen but a speaker had to pull out at the last minute. Managed to do mostly ok, considering that I had all of 5 minutes prep time. I was good to have the opportunity to present a positive outcome from EGL that they could relate to the some of the work that have been doing (or not? *wink*)
I’ve had a MRI, which showed no signs of MS or Disc Degenerative Disease (whew). I’ve had a nerve conduction test which showed that the conduction is happening but the responses are a bit weird. I’m still awaiting a follow up with Neurology. So we are still investigating what exactly is going on with my body, meanwhile I am trying to get my body in the best shape it can be as I hope to be doing a couple of sponsored walks to contribute to ADNZ Raven’s fundraising campaign.
I’m continuing to see improvement in my mobility, thanks to my physio and the team at Ora Kinetics Ltd; who are providing and supervising my training sessions twice a week. Due to this I have pretty much #DitchedTheSticks around town and on firm, stable ground. I will take my crutches for the trips this summer, they will be strapped to the side of my pack as a “just in case” and I will use my walking poles. That way even if I run out off oomph in my legs I can still complete the journeys I want to do.
I had a couple of months off physio, not because I’m just not doing it (or not seeing results), but in order for me to continue building my strength and conditioning my legs. I started back with my physio for a couple of sessions before the year ended and we are starting into some plyometric work. No, I’m not doing masses of box jumps (yet), I kind of have to learn how to jump first! This type of training will improve my balance and responses while on trail. My first session was a surreal experience.
After my session I made the following post on Facebook….
Me: “This jumping thing is kinda tricky…. the up bit is ok, I do that bit for climbing but then we’re usually grabbing something or you’re going for a swing so my body/brain circuit literally does not have any reference for the information it is trying to process on the “down bit” I’m having to fight the drop off and roll back technique from bouldering…
Physio: “yep, that’s written all over your face, are you going to start calling me names now?”
Please be aware that I’m not “nasty” to my physio, but I do tend to have a love/hate relationship with my rehab team sometimes! I love them because I am seeing results from the work. The “hate” comes from the fact that I feel like I have just managed to get one set of exercises or movements under control and boom, we’re going to make this harder! I know, progression whole point of training. Put in the hours, and get the gains! My gait has changed so much since starting physio and rehab that I needed to go and get a new pair of shoes because the old wear pattern was starting to negatively impact my walking.
I have also been seen by the Pain Management Clinic in Wellington. It was a slightly intimidating process, first you have an interview with the “panel”. The panel consists of a physio, a psychologist and a mediations doctor. The individuals on the panel were pretty nice, but to have only 45mins to give an accurate account of your medical history, in particular your type of pain, how it effects you, how you manage that etc. You then are asked to leave so the panel can have a discussion on the best way forward. Not exactly “Mana Enhancing” I must say but that is the process for now, and when I asked for the rationale the answer was “so it doesn’t turn into another hour of a question and answer session”. I mean I do kind of see their point from a time management and “get the patient in and out to meet the Ministry of Health’s turn around targets ” mentality of our currently Health and Disability System. However the system isn’t just a list faceless numbers as some bureaucrats seem to think, but we are people first and foremost; we happen to have an National Health Index number attached to us in some. People by their very nature are messy, complex beings that all have their own unique set of circumstances that need accounting for. I would have like to have more of a discussion with the Pain Management team around the possible options and the pros/cons of each rather than being told “we are going to try….”
The physio was happy with my recent progress and rehab plan. The psychologist said I had “good management and coping strategies and that talk therapy is always a good option for managing general stress”. The medications doctor recommended changing medications, which was the main reason the neurologist sent me to them. To get to the transition done and the right titrates of medications with “better side effect profiles” could take up to 12 months. I’m now doing medications transitions with the support of the clinical pharmacist at my medical center. It’s not the easiest thing to go through but long term, it should improve my pain management, mobility and stamina.
The humorous moment of this “interview” was when the psychologist asked me, “what is one thing that would greatly reduce your stress?” (This appointment occurred before our general election) I don’t think the panel were quite prepared for my response of “Well if the incoming Minster of Disability Issues would green light the Enabling Good Lives on a longer basis would be good. We’d actually be able to get on with the work of making a better system for Disability Support”. There were some stunned looks and after a beat or two the psychologist responded with “ah yes, that can be an issue when you get involved in high level work.” I’m pretty sure that this is where the recommendation for talk therapy came from. We had a quick catch up with a friend that works for Capital and Coast DHB before we headed home.
I have had my Personal Budget through Mana Whaikaha approved which means that for the next 12 months we have secured some in-home support hours, and the funding for my Ora Kinetics Ltd rehabilitation program. This has taken a lot of stress off. Having the support hours through the Immediate Response funding has a had a huge impact on our mental and physical wellbeing and we have a little more energy to put towards decluttering our whare (house) and just generally living life.
We moved into our property in 2001 and as with most people, we have accumulated a lot of junk. In fact we had 2 rooms that have not been as functional as they could have been. So we have been slowly clearing things out. We have now got the the point where one room is functional but needs some tweaking for my partner’s (MJ) art and book bindery space.
The second room has slowly been chipped away at, and is becoming my office/studio and gear store. Being able to remove the clutter and designate some space for us both to utilize is going to be a vast improvement. At the time I am doing a final edit of this blog I am using my own desk in the room, there is still a bit of organizing to do and I am about to head into the unknown territory of the wardrobe in this room. All the stuff in the room has been pulled out of boxes and culled in a big way, then reorganized, then when I have sorted out the stuff in the wardrobe I can pretty easily and quickly put things away in the “right place”.
Over the last few months we have been “hot desking” in the art space, and although this mostly works, both MJ and I have very different styles of working. It will be helpful for both of us to be able to leave things where they are at, ready to be picked up again rather than have to set up and pack down every time we use the space. I mean we make it work but having our own spaces is going to much easier to manage.
Although I haven’t taken as many photos as I used to, I am enjoying putting my focus through the lens when I need a bit of time out. I have also learnt so much about editing pictures and I managed to do my first composite shot of more than 2 or 3 layers. I also now (thanks Xmas present vouchers!) have another lens to be able to take better shots as the kit lens didn’t have much of a zoom on it. The one down side of technology is sometimes it has a mind of its own, and one of my external drives failed and a lot a significant number of photos, lesson learnt; “back up in multiple places!”. Luckily I had already added the tui picture to the sites Media Library before the external drive crashed!
My social media and blogging game has fallen off, however I hope to up this in the upcoming few months. I have emotionally been exhausted during the last year and although I love my supporters and enjoy the interactions, I have been putting that energy into making sure that we have things set up to be more sustainable in the future. Having my own office space is going to make this a lot easier to manage.
Assistance Dogs NZ (ADNZ) Raven is continuing to learn her role and has most of her main tasks locked in. Yes there is stuff we are tiding up but she is really starting to take it all in her stride. We’re currently pack and weight training her. Just like me needing to be in good shape for summer, she also needs to build her strength and stamina. She is continuing to challenge us with some of her random eating habits . I have had to install some barriers to the compost I have going, she has eaten carrots directly out of the ground and managed to eat most of a bar of WashBar soap that was left out after her bath! I am so glad its non-toxic! We are planning to head out to a easy walk hut for a couple of nights to introduce her to being out in the bush, staying overnight in strange places and it gives me a chance to do some measurements of the doors and to properly assess the accessibility of this hut and facilities as a potential site for getting some of our disabled people out to the bush for a night. We had another awesome trip to see her supporters at the Palmerston North Court house, again guys, thank you for your support!
Overall 2020 has been challenging on many fronts; however, for me the positives of the year have been an improvement of both my physical and mental health. As we head into 2021 I have the intentions of; actually celebrating the small wins as well as the big wins, and to make my body, home and brain as “functional” as possible while being kind to myself and those around me.
As we all head into the new year I hope you all find some peace, love and joy this year. I hope you find the time and opportunities to see the wee things and be grateful for the small pleasures.
Hurihia to aroaro ki te tukana to atarangi kia taka ki muri i a koe. Turn your face to the sun and the shadows will fall behind you. (Whakatauki; Maori proverb)