Patient Advocacy must be my word of 2019. Since starting on this road in 2017 when I began writing my blog I have wanted to express the needs of the chronic illness patient, and more specifically, people with multiple sclerosis. This year started with the prospect of my walking deteriorating and the prospect of needing a wheelchair by the end of the year was more than possible.
At the end of 2018 I had resolved to get the Bioness L300 Go to help my weakening right leg, and to find also some extra support from the Irish Government to help pay my rent. Both should have been fairly straightforward, but the cost of about €10,000 for the FES device and Galway County Councils insistence on assessing my means by looking at my previous year’s income, made both goals unattainable.
Work had become a distant prospect, as my mobility prevented me from doing physical work, and my unending head pain made any brain work impossible. Medical retirement meant a low income, state funded, and really no visibility of any improvement. Tough, but I had accepted this and had developed a new way of looking at my life, embracing the freedom from being part of the commercial world.
So what happened?
Have you read, or watched, “The Secret”? Or perhaps you read Napoleon Hill’s book “Think and grow rich”? Both advocate asking the world for something, no matter how impossible they appear. The act of committing to paper, or by speaking to the world, what you want, somehow pushes the universe into providing you with the thing you desire. There is a technique to this, by being positive and grateful the chance of this succeeding multiplies.
My endeavours with the Local Authority to get support with my rent had failed, and I had to dip into my savings. This was wrong, and I wrote about how I felt about this here. The system had trapped me, and I felt like I was drowning in bureaucracy. This same system also refused to support the purchase of the FES device, preferring me to use a wheelchair, or maybe just to sit on the couch all day. Excluded from the world. It was grim.
May 22nd I applied for a role in the local university. As I had not been working for several months my mood was getting grim. Despondent. If I got the position, it would help me get out of the house, but it also would help me continue my journey towards becoming a more rounded patient advocate. I had spurned this on when I took part in a meeting with IMI-PARADIGM in March. The goal of IMI-PARADIGM is to create a sustainable environment for patient engagement in medicines development.
On July 1, after completing an interview, I was successful in getting the position of Research Assistant in the COB-MS study. My function is to represent the patient in the study of a new therapy to help cognitive problems for people with multiple sclerosis. This job will last for 30 months and is the first PPI (Patient & Public Involvement) employee of the National University of Ireland Galway.
The last six months have been very interesting and has opened my eyes about the practical realities of performing such a role. The institution wants to include the patient, which is laudable, but the infrastructure is not in place to ensure it happens in a smooth and predictable way. Issues around my mobility, disabled toilets and access are still being resolved, but it is a start.
Physically it is difficult as my mobility, pain, fatigue and headaches have asserted their dominance in my life and they exact a toll for my participation in the world of work. I have accepted this cost as the benefits to me, mentally, are significant.
In a life of chronic illness there is always a compromise.
Walking is becoming much more difficult, and I have noticed my better leg, the left one, is now slowing down noticeably. It has been weaker for more than a year, but climbing the stairs has slowed more because of this weakness. Inevitable, I suppose, but it has been offset by my getting the FES device to help me walk. This has been helpful and allows me to get out of the house and walk. There is also a benefit at work as getting to the cafe for lunch was difficult with my electric chair, and now it is more workable.
I have shared this here and on YouTube. One dream I had was to walk barefoot in the sand. Amazingly while I was on holiday in California, I had this opportunity. Walking in the sand is a challenge for me, and in this video you can see I achieved a dream. This still brings a smile to my face. It also shows how important it is to be grateful for what you have and the positive memories you create. They provide nourishment for the psyche.
The trip to Silicon Valley permitted me to try cannabis oil. Or more specifically THC & THCa to treat my symptoms. This experiment was positive. The spasticity softened and my permanent headaches didn’t worsen. When I arrived home, I resolved I would get to use this in Ireland. A huge amount of luck, and a few months, and now I have been using medicinal cannabis, Sativex, for just over a month, with positive results. No cure, but helpful with a myriad of symptoms. You can read more about this here and here.
At the start of December I found out they have accepted me as one of the new cohort for the EUPATI Patient Expert training. This is very exciting for me as I will now learn how to be a better Patient Advocate for many illnesses, and not just the diseases I have become a reluctant expert. Perhaps my experience will improve the lives of others as I start to influence medicines development. This is very exciting. The challenge I face with this is how to insert my education into a life focused first on my health. An obstacle I will have to overcome in 2020.
Plans for 2020
The last year has had more successes than failures, and taken with the backdrop of my mental and physical health, it has been a successful year. My plan is to build on this carefully only taking on as much as is within my ability, yet pushing the boundary of what I believe are my limits. There are a few things I would like to focus on, and they are:
– Strengthening my mental health
– Continue walking and swimming to maintain my fitness
– Experimenting with dietary improvements to support my body as it fights against MS and pain.
– Continue advocating for people with MS in my work.
– Improving my knowledge with the EUPATI training
– Promoting my Chronic Illness Journal
– Record these blog posts for the local radio Connemara FM, and share as a podcast too.
I have had many obstacles scattered through my life and when I positively faced them they created or strengthened talents, talents I now use to face the world with more confidence.