For the last year and a half I have been writing a post every week. This routine has been part of my therapy and it has caused me to think deeper about how I think about my life. Delving into the dark corners of who I am has unearthed the fears caused by my illness. Will I be able to be a valuable asset to those around me, and now because of this blog, a larger community of people living with chronic illness?
For the last 4 weeks I have shared nothing. My excuse has been that I have not had the time to write, or perhaps the muse has abandoned me. Neither of these is true. Superficially they are as I have been attending physiotherapy twice a week on Tuesdays and Thursdays. Recovery from the sessions, and also from the travel to get to them has been tough. I have also had other days in the week occupied with doctor visits. My days have been fuller than my multiple sclerosis allows me to manage without adding more fatigue.
A recent experiment of writing a diary of the week has been uninspiring for me as it is just repeating what is happening, and the writing was getting repetitive. As a writer, I need to explore, and then share what I have found in my journey. This gives me more fulfilment, and being selfish, allows me to write from the heart, not from the mind.
Therapies for multiple sclerosis are many and varied with the focus on disease modifying therapies (DMT’s). These are a series of high-tech drugs developed to slow the progression. They all have varying levels of success. In the last few months I have been using physiotherapy to help me with my walking which has deteriorated over the last four years, getting to a stage where I could walk 105 metres in six minutes. This is 20% of a normal walking pace. However, at the end of the time it flattened me, not able to take another step.
This situation had a huge impact on my quality of life, and I was searching for a way of living that no longer focused on my physical ability to use my legs. To use my hands, or brain. The issue I have is that my headaches limit my mental capacity to 30 minute sprints.
The MS Society in Galway offered therapy using Functional Electrical Stimulation (FES) to help me with my walking. My first experience of this sparked a fire in my soul. It helped me walk. This simple strap around my thigh and calf made my leg work. It flexed the muscle in a way that my damaged nerves had blocked. Excitement. Enthusiasm. Hope for a chance of slowing this cruel illness using a small battery attached to my leg.
In the last four months this twice weekly work has sped my walking to 220 metres in six minutes, and the fatigue didn’t set in as quick. What helped? I can think of several possible causes. Stronger muscles, exercise, diet are all contributors, but the flames inside ignited by hope is the greatest of these.
Now I need to find a way of having access to this device on a more permanent basis. FES has given me more benefit than three days of IV steroids, or five (very painful) days of IV immunoglobulin. The issue is that this device is not a medicine, and so is under a different budget in our healthcare system. The money isn’t available.
Will this stop me?
No, it won’t. Now I have evidence of its effectiveness, on video, and I will phone, write, and talk until I am hoarse so I can get access. Why? It gives me back a quality of life I have lost. That advancing multiple sclerosis has taken away from me. My walk was in the jaws of of a tyrant and like David I will face it and use my fight to take it back.
Do I know how I will do this? Do I have a plan? Not yet, but I have a goal. It is real, tangible, and I can see it vividly. I have a destination and I will get there. Somehow.
This situation has caused me to reflect on the medical system. I feel they centre it around the medicine, or the medical people, and not centred on the patient. The function of the healthcare system should be to ensure the recipient of the services is the primary focus. I feel that the individuals who are providing the service are trying to do this, but the system is hindering their efforts.
For example, there is no simple system for me to access an FES device to aid my walking. I will have to embark on a voyage of unknown duration or course. They have not created the map, and so I will venture into the wilderness. As I have a chronic illness, and the comes with chronic fatigue, cognitive issues, etc being an explorer is not the simplist of tasks. I need an advocate that will fight for me, and fight with vigour, particularly on the days when I have the marrow sucked from my bones.
Equally I find it incredible that electronic patient records are not the standard. There are random pieces of paper floating all over the place about my medical situation, and these are not connected by some virtual thread. Every time I speak with a new care professional they have to learn my story from the beginning.
This situation has woken something in me. It stokes the glowing ember of the fire inside me, and I want to use this energy. This blog is one place that I can speak from, but I need to move further, speak louder, and be heard. I am only one, but there is a swell of support for this and I want to be part of this change.