M.E Awareness Day 2020-What living with M.E is really like

Today is Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) Awareness day, and like me 3 years ago, you might never have heard about this day or illness. I stopped blogging at a time that I was becoming very sick and trying to find out what was going on. But in the 2 years I've been away from this space, I've had a diagnosis and a lot of things happen. I'll share more about my story of getting diagnosed with M.E and how I'm doing today. But for now, on M.E Awareness day I'd like to share what this illness is really like. The illness that is so commonly misunderstood and thought of as 'just being lazy'. 

Someone asked me a while ago, “what’s it really like having M.E?”. I was slightly taken aback because generally people don’t ask, people shy away from wanting to hear the horror that this illness can cause. I will, more often than not (unless I’m feeling terribly ill) happily talk someone’s ear off about what it’s like because raising awareness about M.E/CFS has become incredibly important to me. It’s a loaded question, one that would be answered differently by every single person that has this disease. No two people experience something the same way, whatever it may be and this is no different. 

Many people assume it’s just extreme tiredness/fatigue, that judgement makes me want to laugh and scream at the same time. I wish that’s all it was, maybe then it would slightly (only slightly because as I’ll mention later the exhaustion is hell) easier to live with. Although it’s awful that I started getting a lot sicker, it meant that they were finally able to figure out what was happening. I can scratch my head all day as to what could have been the possible cause to my M.E developing but chances are I’d be here all day. I’ve had many infections, some pretty awful landing me in hospital and more common colds (which were always horrific and lasted much longer than average) than most children get in their childhood. So somewhere along the way, possibly after my pneumonia or severe food poisoning, I think M.E hopped on for the ride. But, I’m not a doctor so who knows but they don’t know much either on the cause so we’ll stick with my theory for now. Here's a little insight into the symptoms I've experienced and how they feel. 

• The fatigue is unlike anything I’ve experienced in my life. Somewhere between the aftermath of running a marathon (not that I've ever ran one but I can imagine the exhaustion after that), finishing a 3 hour exam, having the worst hangover of your life and also having the flu- all combined together. I know, it sounds like it could possibly be an exaggeration but I can assure you, it’s not and something I didn’t fully comprehend till it hit me. There are days I can’t lift my head off the pillow or lift my arms above my head to put a t-shirt on. It sounds crazy until it happens to you. 
• The muscle aches are so deep and painful they feel as if I haven’t gotten off a treadmill in hours, making it hard to even pick up a glass of water up (I resorted to using mainly plastic cups when I was sick because glasses were too heavy).
• The dizziness feels like you’re on the little teacups at the fair but you’re on them whilst drunk and also in a bright, loud disco- it's as horrendous as it sounds. 
• The nerve pain, something I struggle with immensely in my back and legs making it hard to walk when it’s at its worst, as if someone is taking a curling iron and running it down my legs (although this is not just caused by my M.E as I have a back condition too, it's been made worse by it).
• The memory loss and brain fog making me feel like my brain is walking through thick black smoke unable to string a sentence together or remember what I had for breakfast an hour ago. At times I can laugh about the silly things I say and at times I cry because I've forgotten the answer to question I asked 30 seconds ago. It's incredibly frustrating. This hasn't gone away despite me getting better. 
• The sensitivity to lights and noises is unbearable at times. Some noises pierce through my ears feeling like it’s stabbing my eardrum and at times I have to lie in complete darkness, even the light on my phone is too much for my eyes take in. Going into shops feels like I'm being blinded by the overly fluorescent lights and I feel sick to my stomach. This is another symptom that comes and goes even though I'm now better. 
• Fainting and passing out- when I’m in the middle of a crash I will often times pass out, sometimes only for seconds but repeatedly do so until my body has calmed down, it’s scary. I have little episodes of my head collapsing and my eyes closing/rolling and I can only assume it’s my body trying to shut down and rest. 
• ​Headaches unlike anything I’ve ever experienced, my brain feels like it is swelling, trying to push its way out, pushing on my eyeballs and every side of my head, almost like a pressure cooker waiting to explode. 
• ​Chest pains which are horrific! Extreme tightness, stabbing pains and breathlessness. I've been in hospital on oxygen unable to breath when I was at my worst. ​Accompanied by horrific breathlessness, every breath feels like a struggle. 
• Glandular pain and swollen glands, this was one of the first symptoms to ever appear. My glands in my throat and armpit hurt a lot, more so when I’m very exhausted but it can be quite a deep seated, dull pain that doesn’t go away for hours at a time. ​
• Flu-like symptoms that make it impossible to know if it's your M.E or you're actually coming down with a cold or bug. Your whole body feels constantly weak,  
• Orthostatic Intolerance (milder form of POTS), standing up from sitting or lying down can often times make very dizzy, nauseous, faint and give me heart palpitations. And so can baths, so much fun! 
• A very crappy immune system, sorry there isn’t a nicer way to put it but my immune system is a goner. Mine wasn't great before I got M.E but it's certainly worse now. I catch nearly every bug going (working with kids is really an ideal line of work for me;) and experience common bugs a lot harder than the average person. I’m not being rude but if you have a cold or anything else, please please stay away from me, what can last a couple weeks for you can take me up to 6 weeks to fight off. ​​I had a virus in February and it took my body till the beginning of April to fully recover. 

I’m sure I’ve probably missed some things out (there are 60 official symptoms listed on M.E websites and I don't experience all 60, those above are most of the main ones I experienced on a daily basis when I was at my worst) but just from that alone, you can see this disease is far from “just tiredness”. It’s horrific, it has taken away so many things from me and I wish every person out there knew what this really was like. I wish for not only my sake but for my mum’s sake it was just a case of me being exhausted and sleeping it off, but it’s not. No amount of rest or sleep will cure this or make it go away. Sleep can some times help prevent a crash from happening or an episode of where I faint, getting dizzy and have chest pains but it doesn’t stop them from happening completely. 

I was very fortunate to recover (not completely, but to an extent that I could start living a life I was happy with) in the middle of last year, and it was the biggest blessing of my life. I will go into more detail about my journey with M.E in several posts. At the moment I have for the last few weeks, unfortunately been in a relapse. The first couple weeks were similar to when I first got sick (ending up in hospital, unable to move from bed and sleeping all day) and the fear I felt that I would start losing my life again to this disease was unbearable. However, the last couple of days I've felt the fatigue subside a little and my body has felt like it's able to handle a bit more time out of bed. 

Every aspect of my life has changed in the last 3-4 years since I got sick. Every goal and aspiration has been crushed. Every hope I had for my future has had to be put on pause. It's changed who I am as a person. It's impossible that an illness like this doesn't change you. But I think now I can see it's changed me into a better person. It's changed my entire outlook on life, again for the better. 

M.E is life changing and excruciating, whether you have it mildly, moderately or severely. It changes the lives of those around you. It isn't a simple tiredness. The sickest are bed-bound, tube-fed and haven't moved in years. It's a prison sentence to so many. So although I am sick, I consider myself lucky in many ways.  I hope by sharing some of the symptoms I experience, you're able to see how M.E impacts every system in your body. I hope one day there will be a cure so people don't have to lose their lives, live in agony each day and lose their freedom. 

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