One of the biggest difficulties that we face living with chronic illness is that our health can be unpredictable. Though I’ve seen better days and improvements with my health this year, I’ve also gone through long periods of feeling exhausted, flu-like and just downright awful. And, at times, it has really gotten me down. It makes it hard to plan anything in advance because I never know how I am going to feel.
When You Don’t Want To Miss Out
There are some things, though, that I know I definitely don’t want to miss. And, I take a risk by booking and hoping that everything will turn okay. This is exactly what happened when I heard that my Ravens were coming to London. If you read my ‘10 things about me‘ blog post you will know that I am a big fan of the Baltimore Ravens.
I was so excited when I heard that the Ravens were playing in London. I knew I simply had to be there. My husband, our two friends and I bought our tickets back in January. I had no idea what September would bring or how I would feel. But, it was a gamble I was willing to take.
As it turned out, I was blessed with the best health I have seen in a long while. I had a fantastic weekend in London so I wanted to share it here. I think making memories during the better times is so important. It’s what keeps me going. I thought I’d also end the post by chatting about a few of the strategies I used to manage chronic pain and help get me through the weekend.
Travelling to London
We flew to London on Friday 22nd of September. I set out everything I was taking with me on the Monday before. This meant that I could simply pop my things into my bag on the Thursday and I was good to go. It took away any last minute stress and meant I wasn’t tiring myself out right before we left.
Our flight was delayed by an hour and by the time we had collected our hire car and arrived at our Airbnb, it was after 10. It was pretty much straight to bed for me! On Saturday morning, we were up early and headed to Thorpe Park, which is a theme park located on the outskirts of London.
Visiting Thorpe Park
I wasn’t sure how much I would be able to do but last year I had a great time at Tivoli in Copenhagen so I felt optimistic about it. I think the excitement and adrenaline helps! I had prepared for the trip by submitting an application for a ride access pass, which essentially allows you to skip the queues. I had to submit a letter from my doctor explaining my mobility issues and I was worried that this might not be enough evidence.
Thankfully, it was perfectly fine and I had no issues getting my pass. As a side note, the idea of having to prove my disability annoyed me but it all worked out in the end. I had my wheelchair with me and the combination of my chair and the pass really helped me to enjoy the day as much as possible.
What I Managed To Do
In the end, I went on four of the rollercoasters and the Derren Brown Ghost Train. With each ride, I could feel my legs getting more and more wobbly and unreliable but overall I felt generally okay. I was exhausted by the end of the day but not in an “ill, flu-like way”, which normally happens. It was more of a normal kind of exhaustion. I just tired out a lot quicker than anyone else.
I did take plenty of breaks and may have even shut my eyes for a sneaky recharge. I was really pleased with how I coped though. And, the roller coasters– though really taxing– were a lot of fun. I reckon all the adrenaline and dopamine kept me going.
I wasn’t too fussed for the Derren Brown Ghost Train. It’s a VR experience and I didn’t find it scary, though I am sure many would. Part of the experience really annoyed me though. I won’t go into too much detail but if you don’t want to read any potential spoilers skip the next paragraph.
When I went on the ride there were two wheelchair users; myself and someone else. They did ask me prior to letting me on whether I was able to walk 50m (which I am). But, I wasn’t really prepared for the middle section of the ride. They take you out of the train carriage and basically shout at you to move as quickly as possible. Another actor then comes out (who is some kind of infected zombie) and you are shouted at to keep running away in various directions. I kept out of the way (was I hell running about). I couldn’t help but think this was potentially stressful and dangerous for anyone got caught up in all the rushing with mobility issues though!
We left the park a couple of hours before it closed (I had definitely reached my limit by then). Although I was exhausted, I was buzzing from how well the day went. I did end up going to bed at half 8 though. So rock ‘n roll!
On Sunday, I actually woke up feeling okay. I was really surprised by that but happy about it because I knew that I wouldn’t be able to take my wheelchair with me to Wembley Stadium. I hadn’t even thought about accessibility when booking as I had convinced myself I wouldn’t need it (remember how the denial can be strong with me). Luckily, I was right on this occasion and I managed okay.
We headed to Wembley Stadium early as our friends wanted to purchase some merchandise and we wanted to make the most of the day. It was a brilliant experience. I was amazed at just how many purple jerseys were there (Ravens fans). People literally came from all over the world to see the game. One of the highlights of my morning was getting a photo taken with Poe. Oh, and seeing Ray Lewis dance!
It’s shame that the Ravens never really turned up (they played the absolute worst… what an embarrassment on our part). But, we all had a great time regardless! The experience itself was worth it and the atmosphere was great. We all went crazy celebrating our one touchdown late in the game, even though it meant nothing.
Strategies That Helped Me to Feel as Well as Possible
At times during the game, I really struggled with pain (there was a lot of walking and sitting around that day). So, given there’s not much else to share about my weekend, let’s chat about a few of the strategies that helped me to manage chronic pain and my energy over the course of my time in London.
1. I Took My Wheelchair
As I mentioned above, I took my wheelchair with me to London. This meant that I could avoid exhausting myself both at the airport and on the Saturday when I went to Thorpe Park. For some, it might seem strange to be in a wheelchair for part of the time but not all. For me though, it’s about minimising and managing how much energy I expend.
Sure, I was able to go to the Ravens game without my chair on the Sunday. But, had I not used my chair on the Friday and Saturday, that might have been a different story altogether. By pacing myself and using my wheelchair the days prior, I was able to do more on the Sunday (though I was most definitely still pushing myself on game day and undoubtedly would have still benefited from it!).
Plus, had I been without it on the Saturday, there’s no way I would have been able to do as much as I did at Thorpe Park. I would have definitely been suffering by the end of the day. So, for me, it made perfect sense. There are no rights or wrongs when it comes to helping yourself by using mobility aids. It’s a very individual thing.
2. I Didn’t Overthink Everything
When faced with the idea of flying, visiting a theme park and attending a full day at Wembley, I have to admit that a part of me panicked. Given that I normally spend half a day resting in bed, this was a huge ask! I allowed myself that moment of panic, then I parked it.
I didn’t let myself think about it from then on. I figured I would simply go along with how I was feeling and, at the end of the day, if I had to miss out on parts of the trip that’s just how it had to be. There was no point in over-thinking every aspect of the trip and worrying about how I was going to cope. It would achieve nothing other than making me exhausted from the stress and anxiety.
3. I Planned As Much As I Could
As I mentioned above, I started planning and setting out what I needed to take to London days in advance. This meant that, in the days leading up to my trip, I could completely relax and rest as much as possible in preparation. There was no last minute rush and I felt as prepared as possible for the trip.
When I was there, I planned rest breaks when I could. For example, I made sure to take some time out when at Thorpe Park just to chill out and relax. This definitely helped and played a big role in enabling me to be out for as long as possible.
4. I Took Time Out For Deep Breathing & Relaxation
I have a terrible habit of holding my breath when I am in pain or feeling like I am physically struggling. In addition to reminding myself to breathe, I also consciously took time out to close my eyes, switch off my mind and focus on deep breathing anytime I felt overwhelmed. It really helped me, especially on the Sunday when I was in agony at one point during the Ravens game. I find that doing this helps me to calm down, relaxes my muscles and distracts me from my pain.
5. I Took Painkillers
Day-to-day I do not take pain medication. The medications offered for fibromyalgia don’t work well for me. During my trip, however, I did rely on some over-the-counter pain medication as I was doing far more than I normally would (which equals more pain). I did not wait until I was in pain to take them. I took them in the morning and then throughout the day. It didn’t stop me from being in pain but I do believe it stopped it from becoming all-consuming.
I appreciate that over-the-counter pain medications don’t work for everyone. On this occasion, I do feel they helped me.
6. Distraction Helped
Being in good company and having lots of things to focus on and do certainly helped me. Distraction can be a great way to take your mind off your symptoms. Not thinking about how I was feeling helped me to block it out. And anytime it did creep in, I did the deep breathing as mentioned above.
7. I Minimised What Makes Me Feel Worse
There are certain things that make me feel bad. The most relevant one here is standing. I struggle to stand still and it makes me feel unwell. I think this has to do with autonomic dysfunction as I do find compression socks help with this. I’m much better sitting (preferably reclined with legs raised) or moving.
At the stadium on Sunday, I made sure I wasn’t standing around. I knew I was already massively pushing myself so I didn’t want to add to the stress on my body. I found places to sit and rest as much as possible. Conversely, I got up and stretched/moved anytime I felt myself becoming sore from sitting too long.
It was a weird balancing act to minimise my symptoms as much as possible.
8. I Went to Bed Early
Remember how I said I was in bed by half 8 on the Saturday? I think I stretched it to 9 o’clock on the Sunday. Making sure I got plenty of sleep and rest definitely helped me to feel as well as possible. It has reminded me that I need to be super protective of my sleep.
These are all very simple things but I think, together, they definitely helped me to enjoy myself as much as possible and manage chronic pain.
Have you ever been surprised by how well you have coped with an event or holiday? Do you have any tips that help you to manage these occasions better? Let me know in the comments below.
Share on Pinterest: