Travelling to a Photo or other event with FND

After the disability show I was invited to take photographs at a deaf and disabled adaptive rowing event in East London, which was fine and a pick-up at 9.30 am was even better than my normal set-off time of 7 am or earlier.

Now I did not do my research on where the event was taking place as I did not realise the distance it was from home. I had in my mind expected a nearer venue. Well someone else was driving so did not mind at all.

The car was electric I believe and again I did not expect much traffic on the way, but alas we did hit traffic at the Clapham junction area and a few miles along.

Now the journey was an hour in and I just wondered when it would finish as my legs and knees were complaining about not moving and started to give me small spasms and pain, in fact, it was getting very uncomfortable in the car, I bit my lip and let the journey unfold. Eventually, after 1 hr 45 ish minutes, we arrived at the rowing club. I got out and yes my legs said hang on in there, let us wake up a bit, so stumbled out of the car and as everyone was getting out of the car I was trying to walk the pain off, it does help. It helped enough to go and see the people we were meeting at the club, I was in quite a lot of discomfort at that time and I had not even taken one photo at that point not the ideal way to start a photoshoot.

They said they would go and warm up on the rowing machines in the gym, so a good place to start taking photos as I am trying to tell a storyline here. As the people took to the rowing machines I saw the instructor telling them as they are relatively new to rowing how to exercise and warm up the relevant muscles. I walked around the gym taking still and videos of the activity.

During the warm-up session, my knees were hurting a little, but as I started to concentrate on the photographs i was taking, I slowly forgot about the pain or did the pain actually disappear? I think my brain was looking for photos and yes the pain was there but my concentration told the brain to forget about it for now.

So the session ended and I picked up my gear and headed down the steps to the boat house. Now going down the stairs, as usual, is hard, I feel like I am going to fall over at any time, and yes the pain was there, but slightly less than before.

A few briefing notes to the rowing teams and the boat was retrieved from the boat house and everyone helped get it on the water. No one fell in!

Now remember these people are deaf mostly and the coach is deaf and has Cerebral palsy. So communications were a lot slower than a usual boat launch as hand signals and sign language were used.  However, during the day, I picked up a couple of sign language gestures which was a bonus.

Final briefing as they got into the boat and they slowly went off down the river, no pace yet, as this is only the second time they had been on the water. I photographed them with a mixture of video and stills. As they made their way down the river it was time for me to relax for 10-15 minutes before they headed back to us. I sat on the floor waiting for them to return, however, my legs started to cramp up after a few minutes so I had to stand up and eventually found a chair and sat down. Trying not to let the pain overcome my ability to take photos.  I am used to now suppressing the pain on my face now as for me pain is an everyday occurrence, i wish it was not as the pain is typically 3-4/10 and on days like this can go to 6-7/10. Like today in the car.

I saw them returning and fired off a few shots as they rowed past us on the way upstream. Around 10 minutes later they came back and headed to the dock.  Now I was so engrossed in getting the photographs I did not hear my friend shouting at me at all (I can hear it on the video after the event in my video) it was not until someone from the boat shed came closer to me and said look out there was another boat docking behind this one and I was about to be hit by an oar at around ankle height. I did not know I was in any danger, I stepped out of the way and let the boat dock just in time.

So when I am photographing and completely involved in it, I do not hear my friends calling to me, someone has to approach me and shout a little louder.  This is not the first time things like that have happened to me when I am completely engrossed in my photography. When I have stopped sometimes there are some odd expressions from the people around me as to why I put myself in a little danger to get the photo. However, I do get the shot!

So during this time the pain again disappeared from my legs, yes I use a walking stick at all times, I can walk without it for short distances. But that distance is sometimes 10 meters more or 1-2 just depending on the day, and circumstances I never know which until it actually happens.

Day over for me anyway and we head for a coffee, I load up the photos and have a quick scan through them and they look good, I show a few people and they like what they see and it’s time to drive back home.

However my friend was going to get a UBER, but due to the distance, they did not pick up the job or cancel it. So it was either wait an hour and 20 minutes before our taxi could take us back or get home on my own. I opted for getting home on my own. I was dropped off at the nearest tube station and made my way home in just over an hour. I was relieved at that. At least when you get on and off tube trains yes awkward at times, however, my body is moving and not staying in one position for more than 30 minutes and I can stretch out my legs on the train. Making it a much more comfortable journey home than to the event.

So what did I learn about the FND and travelling that distance in a car or on a train?

In a car I cannot stretch my legs much and sitting for 1hr 45 mins on almost the same position is not good for me personally. On the return trip, while I had to walk a lot more than in the car, my legs and knees did not hurt as much on the way back.

Why is this useful for me? well, I am going to Birmingham in mid-August and the longest part of the journey is 2hrs 11 minutes, however, I can get up from my seat and walk around if my knees and legs play up.  Also, I hope to go to Germany for the Invictus Games in September I had thought of flying there, but my camera kit/computer kit would have cost me a lot extra, so I have decided to take the train via Lille or Paris not sure yet. Why train over flying?, well I need to know how my body reacts to longer distances and with FND while I am allowed to fly, sitting in one position for 1-1,5 hrs hours is not something i want to do just yet as this will be the longest trip I would have done since I was diagnosed on April 22.

I just don’t want to aggravate the FND/pain as I have a very intense 4 plus days of photography to do. I have to know when to say stop which is very hard for me as I always want to be on the go taking photographs, and that was before the FND. However, I must listen to my body and say no to certain parts of what I would like to photograph and choose carefully what to photograph and when to rest in a press room, eat or even head back to the hotel to rest.  This is something that does not come naturally to me.

15 months on, I still don’t see the warning signs until it’s almost too late (I am enjoying myself too much, taking photos). Well to be honest the amount of photography I am doing at present is brilliant and loving every minute of it. I also see my photography improving at each event I go to and don’t want to stop (that’s a problem for me and the FND) However the FND does tell me to stop with exhaustion, pain and brain fog. All I can then do is survive eg make some food, drink some tea, have a shower and head to bed whatever time of day it is.

At any event that I attend, I do take extra painkillers in case the pain gets worse, typically on the journey home as I am sitting on a train and I did not take any pain relief does it start after my body eases down after taking photographs.

I am due to go to a pain clinic in September as I need to get this pain under more control, as it’s not just events that hurt me. I have had a relaxing day doing stuff around the house and then at 2 am I am woken up in immense pain, it just comes at will, and today is Saturday and as I woke today I was on my back and the first thing I felt was a pain in my waist, legs and knees  before I even got up

So when you might see me flagging at one of your events, please remind me to take a break, eat and drink something, as I forget to do those things again after it’s too late and I am digging into my energy reserves and that usually goes the pain starts to kick in!

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