At the moment, my husband and I are in the UK, specifically in Wales in a place called Betsw-y-coed. It is a beautiful place and popular with tourists. The reason we are here in particular is that we are catching up with some friends that my husband made through some walking holidays. When I say ‘walking holidays’ I don’t just mean strolling through the countryside, we are talking walking up mountains and going to places like Machu Picchu in the Andes Mountains of Peru.
The group first got together just over 30 years ago and they have kept in touch ever since. We have been fortunate that each time we have visited, we have been able to catch up with them. They are a great bunch of people and we really enjoy their company. Plus, I get to hear of some of my husband’s adventures prior to us getting together. They still remain active as individuals and have continued to go on trips that sound so much more adventurous than the rather tame trips to Rarotonga and Australia (Melbourne only) that we have gone on together.
One of the things that can be hard to understand for people who do not have any experience of Parkinson’s is the many ways that the condition can affect someone. Fatigue is a big part of Parkinson’s that even I don’t always fully realise. Sometimes, it just hits me seemingly out of the blue and a wave of tiredness just comes upon me. The skill of listening to my body is certainly important. I don’t always get it right, but mind you who does? As I described it at one stage yesterday, I can still go about my life and not fully feel the impact of Parkinson’s on it. But, when I go and overdo things, it is like this thing gives me a poke and says “Remember me, your friend Parkinson’s. I’m not letting you forget me!” and so it rears it’s ugly head and all of a sudden, I remember and experience the fact that I have this constant and unwelcome companion.
So, I have to try and adjust my expectations of myself and to endeavour not to try to keep up with people who still manage to keep up their fitness and to do walks that I could never imagine doing. Also, because they are all at a similar level of fitness, they can compare themselves and feel that they are all having a similar experience. Because of this, there seems to be little problem with any plans for any walks or other adventures they have together.
Along I come amongst all this and although I am overweight – which obviously affects my mobility and health – I do not necessarily exhibit many obvious symptoms of Parkinson’s and so it can be challenging for others to realise the ways it affects my everyday life.
Yesterday we went on the Snowdon railway up a mountain. It is a very steep railway and it is the only way that I would ever get up to the top. We all enjoyed the trip and the views were amazing. When we were once more at the station at the bottom of the mountain, we were ready to go home. After a discussion with the drivers – who had had to find a park after they dropped us off – we were offered to be picked up from the station or to walk to the cars which were ‘not far away’. We chose to walk, but soon realised that ‘not far away’ was quite different in perspective between an overweight person with Parkinson’s than a fit and active person used to walking on long treks up hill and down dale. By the time I got to the car, I was pretty shattered.
Later on, we had booked a restaurant for dinner and again the group decided to walk and once again we were told it was not far. Again, it felt like forever to my tired old Parkinson’s body. Again, for the people we were with this was a tame little walk to dinner, but for me it was a mission! After our meal, I started to walk home with my husband and some of the group were behind me. I urged them to go ahead as I felt I was holding them up. They all said for me to take my time and that they wanted to walk with me, which was lovely and much appreciated. It was nice to feel their support and encouragement and eventually I found my way home.
All in all, it was a lovely day out with friends in a lovely setting. I have reminded myself, however, that if I have two busy days in a row, that on the third day I need to have a day of rest. If not resting the whole day, at least ensuring that I have a decent period of inactivity, maybe reading a book or just sitting and chatting. I’m sure if I can monitor my fatigue that I will be able to continue to be reasonably active and enjoy my holiday.
It is understandable that the people I am with during this holiday, do not fully understand the challenges that I face.
After all, if I am figuring things out along the way and don’t fully understand myself, how can I expect anyone else to do so?
Each time we travel, especially the big trip to the UK, it seems I face new challenges, but we are determined to enjoy these trips as long as we can continue to have them. We may have to tweak some of the ways we do things and agree to compromises regarding what is safe and/or within my capabilities to do. But, we are both determined to continue to experience these holidays and to build wonderful memories together.
Parkinson’s may be along for the ride, but they are consigned to the back seat and sometimes may need to be acknowledged, but cannot and will not be allowed to control or decide what we do on these trips.
I must continue to listen to my body, but it must also listen to me when I tell it we are going to give things a go!
All I can do, is try my very best.
My journey with Parkinsons 