Quality of Life - When does a luxury become a necessity?
I am writing this piece and posting it on the forum just to see if anyone has any comment to make, or indeed has found their own luxury that has become a necessity since being diagnosed with Parkinson’s. Allow me to explain.
This week I had a few days away and travelled first class by train. I had not done that before, indeed I never even thought about it until this trip. The fact is I have had some poor experiences of train travel and as a result this can cause the anxiety symptom that is so difficult to manage at times, to kick in. This can include my feet freezing. Getting on and off trains, particularly long distance ones, can be especially problematic. The trains do not wait long, there is a scramble to get on or off, the aisle is narrow and trying to squeeze past other passengers with luggage etc while everyone including me, is trying to find their reserved seat and get settled is something akin to a nightmare at times. The trains are often very busy, leg room limited, people going up and down to the buffet car etc often means being jostled as someone tries to create room for someone passing the other way - you get the idea. I like train travel but it was becoming more of an ordeal, something to tolerate to get to my destination and not an enjoyable part of my trip.
That was the situation I was facing with my recent trip. So I began to think of other ways to make this journey more relaxed and comfortable for me. It wasn’t possible to do what I normally do, which is send my luggage on ahead so that I travel with only one small bag. This time I had to take my main luggage with me, which made it more important to consider making the journey as simple and relaxed as I could. The obvious thing to look at was travelling first class. Obviously it was more expensive but by buying an advance ticket and my rail card, it cost £80 return. I factored this intp the costs of the trip overall and in truth it didn’t take much adjustment to be able to cover this amount so I booked. What a revelation. The train pulled in, I put my bag on the train and went to step in, a staff member saw me came out to take my bag and show me to a seat. The carriage was all but empty. When we got to my destination my bag was taken off the train by one of the train crew, who made sure I could manage before leaving me. It was the same on the return. I had a peaceful, quiet journey, comfortable seat and loads of leg room. Food and drink were brought to my seat with unexpected touches like coffee in a china mug, a glass tumbler, proper cutlery - even the napkin which was paper, was thicker and larger than normal and felt almost like linen. I had an enjoyable and stress free train journey for the first time in years.
I now consider first class train travel for long distance train journeys anyway, a necessity not a luxury because it doesn’t impact on my Parkinson’s, and that alone is worth everything. If all it takes is to factor in the cost to the overall cost and plan early so that there is time to save up for the additional cost, I will do that.
This goes alongside what is arguably my other biggest expense, which I have previously written about on the forum, and that is my personal trainer with whom I do 3 x 1 hour sessions per week. Currently paid for out of my PIP but if that was stopped I would do everything I could to be able to continue my sessions. I am fitter and stronger than at any time of my life and I want her in my corner to help manage whatever Parkinson’s may throw in my direction for as long as I can raise the money - I would give up other things before losing my personal trainer.
There is no doubt that these two things, neither of which I would ever have normally considered and have only done so because of my Parkinson’s diagnosis, I now think of as a necessary part of managing my Parkinson’s symptoms and allowing me a quality of life I would not otherwise be able to have. I just wondered what others may think or indeed, if any of you have found something that might be seen as a luxury to be necessary or at least worth it, in making life with Parkinson’s not quite such hard work.
Tot