The last week has been much easier since I stopped writing a post every day (you can read why I made this decision here). Suddenly I had time to do some exercise, head outside for a scooter ‘walk’ and yesterday we went to Galway to collect my new glasses. Everything happened with much less pressure, a life suitable for someone with a chronic illness.
Writing an abstract
During the week I finalised an abstract for the ECTRIMS conference in October. This is a European conference all about Multiple Sclerosis. As the trial I am working on (you can learn more about it here) is a new therapy for treating cognitive problems experienced by people living with MS, we felt it would be great to share what we are learning. Each member of the team has submitted a 2,500 character (including spaces) application to the conference on our area of interest.
My talk (if it is accepted) will be about the collective experience of all the patients involved. I am the Embedded Patient Researcher and we have a Patient Advisory Panel, together we are working to make the experience of the trial for the people involved in getting the treatment, as positive an experience as possible. Ultimately, we hope, this will lead to a better therapy. Time will tell.
Getting new glasses
I recently wrote about going to see the optician. Two weeks ago I was prescribed new glasses for everyday wear, and another pair for when I am using the computer. These have special filters which will reduce the pain I experience from artificial light. Yesterday, I collected them and I also had another scan of the back of my eye, to make sure there is no damage, damage possibly due to MS. Fortunately, the scan showed a healthy eye. A big relief. The new everyday glasses seem better and the ones for the computer, I will have to wait and see.
An interesting thought
On the trip to Galway there are a lot of road works. Improving the road surface and also straightening the crooked route. It is very strange for me, as I am accustomed to twisty and narrow roads. Also, we don’t have traffic lights. In the town were I live we have a pedestrian crossing with lights, but this is the only set, until Moycullen, an hours drive away. Due to the repairs there are now three to four sets of lights, and one set takes about four minutes.
As I was sitting at this light I thought perhaps these lights are here not just to make driving safer while things are being fixed, but as a way of sharing the experience of living in a city. We, rural dwellers, don’t know the hassle of city driving and the stop-go nature of live in the big smoke. These lights gave me a taste of living in a different world, which was even more highlighted when we got to Galway. Stuck in traffic, everywhere. Then, I wondered, what city folk think of driving and living in the country. How do they get to experience the pleasure of continuous driving?
This idea swiftly disappeared as I wondered if there is some way of sharing the experience of living with an illness like MS? If a healthy person had the experience of being ill, like me, for a month. Experiencing the obstacles, like signs blocking the footpath, blurred vision, constant pain and a crushing fatigue. Not to mention the financial and mental hardship of having a body which has no intention of making life a pleasure.
The MS Society of Ireland had a bus, travelling around the country, which was a cafe, with a difference. Extra heavy chairs, uneven floors which suddenly move, cups with awkward handles are some of the ways this MisUnderstood Cafe shared our experience of living with this illness. When I was stopped at the traffic light on Friday I wondered how much the understanding of my illness would improve if people, and healthcare professionals, felt what it would be like to live like me. Not for 15 minutes over a cup of coffee, but for a whole month. This would change so much, and perhaps people would have more empathy of the life of someone with a chronic illness.
The coming week
I like to have goals to achieve in my life. They give me purpose and a feeling of achievement and value. On Thursday, at 1pm, I will be hosting the fourth episode of the Progressive MS Webinar Series. The interviewee will be Lorna Spellman who is an Occupational Therapist (OT). This should be a great follow-up to the last episode which was all about Carer’s Mental Health. The conversation will revolve around resiliency, learning what tools are available to help people, like me, who have a progressive form of this illness. Loads to learn and share. I hope you can join me.
