I hadn’t been feeling great for a while but I thought I could tough it out on my own, without the assistance of CHEMICALS. Was I wrong! Sure I was but I am stubborn and bolshie and try to sort out my MS issues internally. The power of positive thinking, yoga and any other self-help remedy that I could think of. There comes a time when a third-party intervention is required and for me the time had come. I needed help.
I eventually contacted my Neuro and explained my problem while at the same time realising that I had not had steroids for 4 years. I remember that because I had a session just before my daughter Elaine’s wedding and that was July 2010. Now my daughter Mairead is getting married in August so it was probably time to reboot my system.
A funny thought ran through my mind in relation to steroids which said ‘now that your 2nd child is getting married and I only had 2, maybe I won’t feel the stress and pressure of being the wedding planner ever again. Maybe I would never need steroids again. Good luck with that! Men are always so involved in wedding preparation that the pressure is immense.
My 1st infusion was scheduled for Tuesday morning but due to a misunderstanding I was not informed. I was settled into the gym doing some upper body work, legs not so good, when Jean phoned and I made my way to the hospital at speed. I got into the infusion unit and I met the receptionist who knew me from my days on Tysabri, infusions every 4 weeks. It was like meeting a friend I hadn’t seen for a few years. On into the ward and met the nurses who again knew me from my Tysabri days, more old friends. Had a chat with them all, got my fix and headed for home with the return time indelibly etched in my brain.
Day 2 and Jean dropped me over as parking can be quite difficult and in any event we had decided to meet Elaine for coffee in the adjacent shopping centre when I would be finished. More old friends and catch ups. I got my fix and headed for Wilton Shopping Centre for tea and cake with Jean & Elaine. We had to move our Friday Coffee Club to Wednesday as Elaine was heading away to Limerick for the Special Olympics.
Day 3 dawned bright and early and I headed off to the hospital for my last dose. The infusion ward was full to capacity so I was facilitated in a different part of the hospital. I met no one that morning except the neurology nurses and they are brilliant and know me better than any other nurse in the hospital but I already had my catch-ups with them.
Day 3 crystallised the social aspect of medication in my mind. I had been getting Tysabri every 4 weeks for 5 years. I had met numerous nurses over that time and would be delighted to introduce any of them as my friends. There were different receptionists and not to forget the tea ladies who were always there to get me a cuppa and some toast. I also met fellow MSsers in for their Tysabri trips and we would always have a chat and a bit of banter in our adjoining cubicles. I don’t meet any of them anymore and I often wonder how they are getting on. The one thing that I don’t miss about Tysabri is the 4 weekly blood tests and infusion but I do miss the social contact. You see we were all in the same boat and there is some degree of comfort knowing the person alongside you knows what you are going through.
It has been suggested that the social aspect of medication is a powerful factor and that people on clinical trials receiving placebos in group environments fare better than those receiving the actual medication in isolation. Interesting, but another days work.