I’m sure you are wondering about the strange title to this post. Well, this is one of those promised posts that will reveal a lot more about who I am as well as why I am typing this in a horizontal position.
Social media only tells part of the story
I suffer with chronic fatigue. People may find this fact very difficult to believe, especially those who have followed my travels for the last 3 years. Many people are envious of my lifestyle and often people comment that they wouldn’t have the energy to do what I do, but they are forming their views on what they see on social media.
I am prolific on Facebook, I have posted photo albums of all my journeys, my house sits, my stays in hostels, my long bus journeys, and nights spent sleeping in airports. But there is also one album, that I haven’t posted in for a while, that many people have never noticed and its title is ‘A Different Perspective’.
A different perspective
The album contains photos taken of me, by me, in horizontal and semi-horizontal positions on park benches and reclining against tree trunks. It also includes photos of what I can see when I am horizontal. There should really be a lot more photos in there because I spend as much time lying down as I do standing up.
Park benches and trees trunks
Lying down is quite interesting though, it really does give a very different perspective on things.
And I get a great view of my feet
And sometimes it’s very thought provoking
I lay under these trees for quite some time. It was only about 10am (and yes, I do get tired that early in the day). As I lay there the leaves were falling all around me.
It was so lovely and peaceful and I thought to myself that if I were well I would never have had that wonderful experience, I would have been charging around filling every moment with busyness.
What is fatigue?
Fatigue is not something that people can easily understand. Even those of us who suffer with it find it difficult to explain and we can have a hard time understanding what someone else’s fatigue feels like. I often see photos on Facebook of people, who I know to have the same illness as myself, and I wonder how on earth can they do what they are doing. The thing is, what we see is only a snapshot (literally) of another person’s life. It doesn’t show what went before or after. It doesn’t show the suffering that someone endures because they went out, spent time in a noisy room, indulged in conversation for too long, or were exposed to sensory overload.
I find it hard at times to know what to tell people about this thing that is wrong with me. My official diagnosis is Fibromyalgia (given by a rheumatologist, based on pain) but having belonged to a couple of support groups for many years I lean more towards Myalgic Encephalomyelitis commonly referred to as ME or Chronic Fatigue Syndrome (CFS). As we don’t even have a consultant for ME in Northern Ireland, where I live, it’s unlikely that I will ever have a proper diagnosis. It’s most likely both conditions, there is very little difference between them and many people suffer with both. My own GP once said to me, “you can call it what you like, Fibromyalgia, ME, Post Viral Syndrome, but the fact is, it is real, it is debilitating, and you probably know a lot more about it than I do”. I like my doctor, he says it like it is.
I’m sure I will be touching on this topic many times as I write this blog, because it shapes everything I do, or don’t do, in my life. It determines where I go and how, it limits my life choices drastically, it nearly drove me to suicide several years ago, it has changed my life beyond all recognition, but for now I will explain why, on this particular day, I am horizontal.
Why am I horizontal today?
I really need to go back 2 days to begin. On Monday I went out for the day. I travelled on a very noisy bus for 40 minutes and then took the Metro to a particular area in Porto. My aim was to gather information for a series of blogs I am planning to write on free stuff to do in Porto. All went well, I manged to visit all the places I intended, I took photos, made notes and got home without getting lost or missing any of the transport links.
Going out for the day is something I rarely do though. I normally remain much closer to where I am staying so that I don’t overstretch myself and I always check where the park benches are for when I need them. I knew I was pushing myself and I knew I would pay for it. I had planned to stay in yesterday (New Years Eve) to recover but then I realised that the shops might be shut today for New Years Day and I needed a few things.
A step too far
So, yesterday around noon, I headed off to the supermarket. It’s quite a distance, 1.9km to be precise but it’s flat and is a lovely walk along the seafront, I am currently in Lavadores, Vila Nova de Gaia, Portugal. I was feeling great and walked at a brisk pace enjoying the sunshine and fresh winds that blow off the Atlantic.
The walk to the supermarket
I spent a while in the supermarket, got what I needed, paid and left. Now, going to a supermarket is something I never do at home, I have my groceries delivered, because it is one of my biggest triggers for fatigue. It seems to be a combination of the lights, the noise and the smells, but whatever it is can floor me very quickly and, of course, I had already expended a great deal of energy the day before.
As soon as I left I knew I was in trouble. My legs felt like lead, were shaky, and I had trouble walking in a straight line. What a different experience the walk home was compared to the walk there. I had to sit down several times and really struggled with the short, but steep hill, at the end of the walk.
I got in, unpacked the items that needed to go in the fridge and freezer, and left everything else in the bags. I didn’t even have the energy to remove my shoes. I buttered myself a couple of slices of bread and ate those with a bit of cooked chicken, filled a hot water bottle, grabbed a blanket and lay down on the sofa.
The final nail in the coffin
I woke up about 3 hours later, probably because of the burning pain in my feet and legs and the stabbing pains in my hands, and decided I had better check my laptop for messages, I like to stay in contact with my daughter. Well, when I turned on my laptop all I could see along the bottom were flashing, shimmering Happy New Year GIFs that had been sent to me in Messenger. Total nightmare!
For me, it’s like getting stabbed in the brain, and pricked in the face with a thousand pins, it physically hurts. I kept shutting them down, which is a difficult task, trying to find that little x to click on when you are having trouble looking at them! It seemed for every one I shut down another one appeared but I did eventually find the couple of messages that I actually needed to see.
I do appreciate the fact that people want to wish me a Happy New Year, it’s very thoughtful, but so many of these seem to come from people who must just send them to everyone on their friends list and then there is the interminable ‘keep it moving’ or ‘pass it on’ posts. I have asked many times that people don’t send these to me but still they come.
Anyway, although I had slept for several hours this knocked me back again and I spent the rest of the evening horizontal on the sofa, with my eyes closed, head swimming, burning feet and legs etc etc, you get then picture.
Another misconception many people have is that resting involves watching TV, reading, listening to music etc but unfortunately this not real rest. Real rest is extremely boring, it means doing nothing and removing as much sensory stimulation as possible! I did venture onto Facebook a couple of times only to discover more flashing images. I tried to figure out how to turn off messenger completely but couldn’t remember how and it was hurting my eyes trying.
And I’ll be finished soon
Anyway, to cut a long story short (actually, probably too late for that at this stage) I was in bed early but was woken up with fireworks at midnight followed by lots of cars blasting their horns. I’m not sure where the fireworks where, it’s hard to tell how far noise carries at night but I didn’t have the energy to get out of bed to see them, and I am not much the wiser about how the Portuguese celebrate New Year.
I am still lying, in a semi-horizontal position typing this in short bursts in between resting my eyes, which still hurt. Today will have to be a slow day in order for me to recover but hopefully the sun will be out and I can snooze out on the balcony. I try to sleep outside as much as possible and soak up the Vitamin D which I find to be very beneficial, it’s actually why I started to travel.
I hope this hasn’t been too much of a self indulgent post but I do think it’s important for those of you who are taking the time to follow my blog to get to know me, it will put things into context for you. If you have stuck with it to the end you deserve a pat on the back. I will close now by wishing you a very Happy and Healthy New Year.
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