My fitness level, last time I got it checked, was that of an unfit 69-year-old. How do I know? When I was getting my ME diagnosis, I was hooked up to an exercise bike and a lot of different machines measuring different things. After analysing this data, it was compared to an ‘unfit average’ for each age group, such that they found my fitness level to be comparable with that of an unfit 69-year-old. This basically means that I have a septuagenarian body, living inside that of a 25-year-old.
So how exactly does this make me feel?
I realised recently, whilst suffering from a very long migraine, that I have never written about the physical symptoms of either of my illnesses – focussing instead, on the more emotional issues. So, today, I will clear up that mystery, and explain some of the more prevalent symptoms that I experience. When living with a multi-system illness such as ME, there are such a plethora of seemingly random symptoms, and these have been my norm for so long, that it is likely I will forget something. But to understand the context of the rest of my blog posts, it is important to understand what my bodily symptoms are.
I have both ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) and POTS (postural orthostatic tachycardia syndrome). These illnesses often come together, and often alongside other chronic illnesses. They are like pokémon: once you catch one, it seems you gotta catch ‘em all! But what is important to note is that no-one who has ME/CFS or POTS has exactly the same experience, or set of symptoms – although there are commonalities. This post is just my experience.
Fatigue
The biggest indicator that I have ME/CFS, and for me perhaps the most debilitating and hated of my symptoms, is fatigue. The word ‘fatigue’ does not really give this symptom justice. There is not yet a word to describe the exhaustion experienced by many with chronic illnesses so instead I will do my best to describe it.
This is the sort of tiredness that a good night’s sleep does not remedy at all. Every morning I wake up and feel exhausted. The best way I can explain it is that it is comparable to the sort of bodily tiredness that you feel just after having had an intense fever. Or if you are lucky enough not to have had that, it is the sort of tiredness you feel when you are incredibly hungover, danced all night but have an 8:30 am class that you have to get to.
You want to move your body but it involves as much will power as it would for an abled person who hates running going out for a run. Everything is heavy and it feels as if you are moving through a thick layer of jam. I sometimes describe it as just feeling ‘empty with exhaustion’, but I’m not sure if that really helps those who don’t experience it!
For the me, the real kicker about this symptom is what they call Post Exertional Malaise (‘PEM’), which means that even if you wanted to force yourself to get up and on, you cannot. PEM is, in layman’s terms, an allergy to activity. I have a certain amount of energy and, if I do too much, whether it is physical (bear in mind, that is things like eating, standing, washing) or mental (reading, talking, watching, etc.) then I make myself sicker. This means that by overdoing it too much I can give myself a relapse. So, I cannot afford to push through my symptoms because I will just make myself sicker in the long run (which is what I did throughout university, leading to a huge crash afterwards).
Pain
Pain itself is a big category of symptoms and until I became sick I never realised how many different types of pain you can feel, nor how difficult it is to describe pain. I experience a general and persistent muscle pain, as if I have been training non-stop for weeks. Which I guess given my level of fitness and health, is essentially what I am doing!
This feels like incredibly achy muscles and is probably explained by the fact that people with ME/CFS produce something like seven times the amount of lactic acid that an abled person produces. But it also means burning pain. My legs burn climbing the stairs to my apartment, my chest burns when I stand for too long cooking, and my arms burn holding up a book to read. My head aches from thinking too much (seriously!) or looking at technology, not drinking enough water, or really just existing! This pain is something I experience almost all of the time.
Migraines
Something that I have fairly regularly, once a week or sometimes more, is a migraine. Migraines are actually more than just pain: for me they also involve nausea and sensitivity to light and sound. But the pain of these migraines is a sort of throbbing stab in my temples and all the way down my neck and shoulders. This is more severe than the continual pain I experience, and is harder to ignore. It is invisible to most people – although my partner just needs to take one look at my face to see the swelling and throbbing, and to know exactly where the pain is located – and, thankfully, I have become experienced in (mostly) smiling through it!
Costochondritis
I did not always experience costochondritis, but I have been having it for the last year or two. This pain is one that still really scares me because for me it is a pain that is usually located in the top left part of my chest. But this pain is so severe that breathing hurts – and for the first few months of getting it, I was sure I was on the brink of a heart attack or heart failure. Thankfully, it appears to be swollen and painful ribs instead and, as it says in multiple places online, this pain can mimic the pain of having a heart attack – so my fear wasn’t completely unfounded! Nowadays, whenever I get this pain when I am tired, I still have actively to remind myself that I have costochrondritis, it will pass and it just another one of my ME symptoms.
Allergy to gravity
This symptom is the classic POTS symptom, but what do I mean by the fact that I am allergic to gravity? Imagine the feeling you get when you stand up too quickly and everything turns blurry for a second. I have this, except it happens every time I am upright. After a short time, the blood starts pooling in my legs instead of flowing fully round my body, so my heart rate increases hugely, to compensate and to ensure that enough blood flows round my body. What this means for me is that being upright, or standing, makes me feel dizzy, and makes my Fitbit think that I am doing intense exercise.
My lying down heart rate is around 60bpm but my standing heart rate, in the shower, is 175bpm, and doing the washing up it is 160bpm – both of which are really high. This could apparently result in me passing out, but I have never really pushed it that far, ending up sitting down again before I keel over. It is, however, you will often find me with my legs up, sitting cross legged on a desk chair, or sporting thigh length compression socks which force the blood to keep on moving!
Brain Fog
Brain fog is another very frustrating symptom, but has made for some very silly stories. This for me feels as if my brain is filled with cotton wool, and everything I want to think, do or see is processed through a thick cloud of fog. I guess it could be compared to the foggy feeling you experience when you are drunk, but it isn’t quite the same. It makes it very difficult to find the correct words, to use the right grammar and to remember even the most basic things.
A couple of examples of brain fog in action: I was offering my friend (who also has ME) a cup of tea, but neither of us could remember the word for tea, nor the word for the flavour of the tea bag, and when they finally did remember I had to re-ask several times just to remember which tea bag they actually wanted… and then I still gave them the wrong flavour, despite the five minute conversation about making it! Luckily, they had forgotten which flavour they wanted – so neither of us was too concerned! And our housemates, over time, got pretty good at decoding our brain fog garble!
The slightly more embarrassing example was when I went grocery shopping with a friend and, at the checkout, I could not remember my pin code at all. Eventually they had to pay for me so that I could get my shopping! I’d like to say this has only happened once, but then I would be lying! Another, more scary example, was when I forgot which tram stop I needed to get off, coming home from work one day.
This is one of the more upsetting symptoms, because it makes it difficult to settle down to doing anything, or focus on anything, when it is particularly bad. It also makes me feel like I am losing my brain, something that I’ve been quite proud of, in the past. I feel my cognitive abilities slowly slipping away, and things like language learning become far more difficult. But it even effects more day to day tasks, like washing my hair, when quite regularly I will wash it several times over because it’s already slipped my mind that I have washed it once. Writing this down is probably the first time I’ve properly reflected on the ways in which brain fog has affected me – and I am a little shocked at how much I have normalised it!
Hypersensitivity to light and sound
Before I got sick, I did not realise that loud noise could physically hurt. But now that I am sick, I have realised more than ever that sound is vibrations and, when it is loud enough, my body processes these vibrations as pain.
I once pushed myself far too hard and went to a day of a music festival. At some point I reached my limit with the sound, completely and utterly, so that every beat of the bass coursed through my body in a stab of pain and what felt like a flutter of my heart. It’s an interesting sensation, and one of the symptoms that I am glad I have experienced because of how weird it is – but it is also deeply unpleasant.
Generally, too much visual disturbance or input, or too much brightness, and too much sound or too invasive a sound, makes me sweat and overheat, as well as start to feel incredibly overwhelmed and nauseous. It makes my head start to spin and I feel a little seasick. This is why you might see me wearing ear plugs when I’m in a particularly squeaky metro or bus – and it also, sadly, means that I don’t get to listen to music as often as I once did.
Sensitivity to food, caffeine and alcohol
Alcohol
I am sensitive to alcohol, coffee and chilli peppers, three of the world’s delights. These are easily avoidable but to be honest this symptom is just really sad. My alcohol sensitivity comes and goes, but when I have it, drinking just isn’t fun, because after half a glass of wine I feel heavy, sluggish, overwhelmed and in a lot of pain. Thankfully, I am still sometimes able to drink, but with a much lowered tolerance! But this does mean that I have the dubious advantage that I remember many of my friends’ more compromising drunken experiences!!
Caffeine
My reaction to caffeine is slightly different. I end up with heart palpitations, intense nausea, and anxiety. I am a great lover of tea, coffee and coco cola so, whilst not terrible, this is disappointing. Especially when I was living in Malaysia and could not drink kopi ais, the best iced coffee you could ever experience.
Food
Food sensitivities are difficult, because it is always difficult to find out what I am sensitive to. I can eat the same meal combination, on three separate occasions, and only react to it once. But I end up with a swollen belly, which is painful, and burning acid reflux which stops me from sleeping.
In general
Whilst these are my main symptoms, there is also a plethora of small things that I have missed out, such as the constant nausea, shakiness, breathlessness, temperature regulation problems etc. I often describe ME as the most hungover day you have ever experienced – except all day, every day – without the fun of the party beforehand.
I haven’t written this post for sympathy. This is simply my day to day lived experience, and I am only sharing it now because I want people to understand what those of us with ME live with, on a daily basis.
We are often able to act as if we are healthy, smile through everything, and come across as doing fine, but even a good day for us involves a lot of pain and exhaustion and, because it is an invisible illness, unless you get to know the signs, you simply won’t see that.
In conclusion, we honestly deserve a collective Oscar for our acting skills because having ME sucks but we cover it all up so incredibly successfully!
