Steroids, the ultimate three day event

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.

Categories: Just thoughts | Tags: , , , | 3 Comments

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3 thoughts on “Steroids, the ultimate three day event

  1. Declan Groeger

    Thanks! The super-hot weather is a small problem, I should be in Spain for this kind of weather, popping into the pool and popping in the sangria. Ah well this Ireland and it can’t last too long.

    • Hahaha yes you should! Funny how some people really have difficulties with Uhthoff’s and others with MS don’t! And yes, it already looks like the weather will be cooler today!

  2. Great post Declan! I hope you’re feeling a bit more energised now and that you’re up for the final stretch to the wedding!

    I so agree with what you say about the social side of having to go for treatment or for check ups. I usually rarely mix with people with MS, unless it is at conferences or meetings like we’ve both been in. Every single time I leave reinforced mentally, and I feel the buzz of having been able to talk to people who know everything I am talking about, and vice versa also. I could almost be walking on air, that’s how well it feels.

    The last few months now have been fantastic in that regard because our little group who met at the Novartis meeting, we just all hit it off and we gel so well (you can tell from all our facebook chats :D) I’ve been buzzing ever since and long may it continue! So yes, the social aspect definitely can’t be ignored!

    Take care of yourself!

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