Today I attended a meeting of the MS & Me blogging group. (If you would like to read the posts, click here).This is a group of people with MS that write for the MS Society here in Ireland. It has a long history – 5 years. This the first time I have attended a meeting like this, and I have to say it was fantastic. The people around the table have achieved so much, and their goal is to help fellow sufferers who have a diagnosis of MS here in Ireland. I am a very recent addition to the team and hope that I will be able to contribute in a meaningful way.

This post is not about this group but is to share the challenges that people with chronic illness face when they have to travel. Planning and preparation are essential. Living on the opposite side of the country I had to make a 300-kilometre journey to attend the meeting, and because of the inability to find suitable public transport, I had to make the journey by car.

Two of my issues are fatigue and frequency. Frequency is when you have to go to the toilet often, and it can sometimes occur with very little warning. This journey, as a result, took me nearly 6 hours, with many stops along the way. My phone tells me it should have taken 3.5 hours. Of course, this extra travel is more tiring and had a knock-on effect on my fatigue. This didn’t come as a shock, and I have learned to give myself time so that I don’t feel rushed.

The meeting started at 9:15, which for me is an ungodly hour. I usually leave my bed at that time and start my breakfast, or I have returned from my swim (if I have the energy). Fortunately, I was able to have breakfast in my room which allowed me to wake a little easier, and I was close to a toilet. The proximity to a toilet is a, sometimes, dictator in my life. Maybe there is a more complicated word for this phobia, toilet phobia really doesn’t sound great. Maybe I will make a new word – something German sounding (they really have great words – Toilettenangst is the translation).

Everything finished at about 3, and my headache had reached a 7 (even after taking extra painkillers before the meeting) plus exhaustion. This is the reality, and I had planned to stay in Dublin an extra night. Resting here in my room I am now able to decompress, relax and get my headache back to its normal 5/10. Tomorrow I will make the trip back to the West and will take Monday as a rest day.

Having the opportunity to meet all these people from vastly different backgrounds was fantastic. Five and half hours of intense activity and it will take 4 days from my life. In my opinion, it is well worth it, and I hope to have more than colleagues from this. Friendships will form, creating a bond in this community that will make us all stronger. When I was well I would have travelled up the night before, and immediately driven home when the meeting finished. The following day would have been a normal day.

These are part of the rules of the game when you have a chronic illness. There is no point in rebelling against them or feeling cheated. There is nothing to gain from that. This is my new ‘normal’. (See my post about the new ‘normal’).

How do you feel about your ‘normal’? Do you have any strategies or tips? Please let me know in the comments below.