The hills in Connemara must be growing, and the stairs are longer and steeper. Every step has become a moment of concentration. Before the COVID-19 pandemic had become mainstream, my walking had become worse. My right leg is assisted by Functional Electrical Stimulation, but the intensity of the pulse needs to increase. Because of several logistic reasons, and staff changes, it has not been possible to get this increase in power completed. Now, because of COVID-19 it isn’t possible to get anything done.
Last November I went to get some orthotic measured to help with my feel, foot drop, and also to get something to use instead of the FES device for when I am around the house. This was finally finished 3 weeks ago, just after they recommended us to stay at home.
Multiple sclerosis is my main illness, but I also have asthma, sarcoidosis (a lung disease) and chronic pain. This list of illnesses puts me in the category of vulnerable. Three autoimmune illnesses, two affecting my lungs. Very scary, and as a result I have been staying at home, away from everyone, except my partner. She has had to take extreme measures when shopping to ensure none of this virus comes into the house.
One of the side effects of the pandemic has been that my partner lost her job and is now at home full-time. This took some adjustment as I have been solitary for a long time, with, maybe, one day a week going to the university for my work as a part-time research assistant. Having the company at home is great, and the weather has been spectacular. So we have spent time in the back patio enjoying the heat, I don’t think a sun holiday is on the cards this year, and I have even got a bit of a tan. Amazing for an Irishman while being in Ireland.
We started going for a walk each day, and initially we would walk together, but over the last month my left leg has become increasingly slow. Unable to lift it, I have ended up swinging it into place, which is bad. So I started using crutches and my FES device at the same time. Last week it hit rock bottom I could no longer walk and then last Wednesday I was so tired and I stayed in bed the whole day. Thursday was nearly as bad. I had to phone the doctor.
My doctor was aware of how things have been progressing over the last few months, and he contacted my neurologist again. After a brief discussion, he suggested that I should go to hospital to get a checkup.
This has been one of the most tough decisions I have ever had to make. Should I expose myself to the risk of getting the SARS-COV-2 virus and the complications of COVID-19? The possibility of compromised lungs, or even death, which could be avoided, by going into Galway and entering a hospital which is the centre of treatment for this virus in the West of Ireland. On the other hand if I didn’t treat this worsening of my MS it could lead to a permanent disability soon than if they treated it. Now I had to weigh up the two prospects. Potential death, or mobility lost too soon. How was I to make this decision?
On Friday I had a Facetime appointment with my psychologist and I discussed the decision I had made, and he noted the anxiety in my face. In the last few years going to see this psychologist, he had never seen this much anxiety. It was making me sick to my stomach. This was after deciding, and usually once I decide all my anxiety disappears, but not this time.
My choice was to go to the hospital, and I let my doctor know on Friday morning and I had an appointment for 11 on Monday to be assessed. On Monday I made the trip, and my neurologist and a physiotherapist checked me, and the decision was to admit me for IV steroids, physiotherapy and a set of MRI scans. Something was about to happen.
It is now Wednesday, and I have already taken my third infusion of steroid, had MRI scans, and been assessed by the Occupational Therapist and Physiotherapist. I am waiting for the results of the scans, but the treatment seems to help, and the extra advice from the PT and OT will be valuable over the coming weeks and months.
The stay in the hospital has been bittersweet, as usual. The noise, and activity, is difficult for me, causing my headaches to worsen more than usual. I am taking Sativex to help this and I have adjusted the times I take it to help soften the increase in pain.
I am learning.
Sleep is always difficult in this setting, and the steroids do not help with this, so I have been taking a sleeping pill each night. Even with this I am getting just about seven hours of deep rest, when I usually have 8-9 hours of sleep at home. So I have lost sleep, but insomnia caused by steroids. Not fun.
I have another two days of treatment to go, but it will be two weeks before I will know if it has been worth the risk (the incubation period for COVID-19). This pandemic has affected everyone in our society, from the youngest to the oldest. Having several chronic illnesses in this time is scary. It is almost medieval, as we don’t have some wonderful medicine to protect us from this horrible prospect. My life depends on the actions of other, and not just one person, but everyone. One slip in social distancing, or poor cough etiquette, could mean my death. I am 51, and despite my chronic conditions I can still be a valuable resource for research into the future. My input could make someone else’s life better, and they could cut it short because someone focuses solely on their need, and not the needs of our society.
The staff in the hospital have been excellent. From the porter who went to get my bags from the car, to the nurse who shared his poetry with me, I have been overwhelmed by the care I have received. All these small gestures add up to a positive experience of what could be a very frightening time and place.