Living with a chronic illness can be tough, very tough. For me the sickness is Secondary Progressive Multiple Sclerosis, and the key word there is Progressive. This means no matter what I do it will get steadily worse, and there is no treatment, just various pills and potions which mask, temporarily, some symptoms. In the last five years this disease, plus chronic pain from a car accident, have gradually robbed me of my ability to walk (I had to get a mobility scooter a few weeks ago) and my work.
In this time my focus has turned towards advocacy, writing and looking after my general health. A month and a half ago I started my job as a part-time Research Assistant on a new MS trial which is going very well. The job is very interesting and I am the representative of the MS community, and my role is to ensure it meets our needs in the design and implementation of the study. It is true I have had challenges in the environment where I work, but this is part of my work too. To ensure other patients who work in this place will have an easier time, and will do their jobs without having to consider their surroundings.
Back in June 2018 my neurologist informed me about Functional Electrical Stimulation. This led me to the MS Society in Galway and they accepted me as part of a trial to assess the effectiveness of FES as a therapy for my walking. For me the experiment was a resounding success, and in this YouTube clip you can see how my walking improved. But because of financial, and fatigue, constraints I could not continue with the remedy. But I resolved to find a way of getting the device, and to use it at home.
Last Friday week I received it by courier, and they fit it the following Monday. Now I can walk. It is incredible. Climbing stairs, being able to stand for over 5 minutes, and walking around the supermarket and not having to rush as my leg got more painful, and slow.
The Monday of the fitting was a long day, and I took 200mg of Provigil so I would be awake enough for the day. The fitting took one and a half hours, and after that I went to work in the University. By the time I was home I was exhausted, and I just ate and went to bed. (10 hours sleep, but not a good sleep because of the Provigil). The next day I had to go to the doctor, and had to convince him I needed more Provigil for my upcoming holiday, and sleeping pills too. (A mix I don’t like, but I make exceptions for holidays). By the time 4:30 arrived I was so tired I couldn’t stand, and my head was spinning. Another early night and eleven hours of languishing in bed.
On the Wednesday I finally got to enjoy the new device, and the opportunity of being able to climb the stairs with it not feeling like Everest, and walking in the town, going from the pharmacy to the post office was now a quick stroll. Such freedom, liberation from the shackles of MS. It isn’t often this happens with SPMS, but for me, for now, it has and I am overjoyed.
Also last week I found out my blog has improved its rankings on the Feedspot list. They list it as number 9 in the top 50 MS blogs worldwide, and as number 20 in the top 100 Chronic Illness Blogs. This is amazing, and I never thought after 2 years of blogging something like this would happen. It is exciting and motivates me to do more.