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.
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.
It’s been over 2 years since I last posted on here and somehow with everything that has happened in my life and the world since then, it feels like it was only last week. I never intended on taking a break. It wasn’t planned or thought out. The weeks just seemed to slip through my fingers. And then it turned into months. Then suddenly 2 years had gone by. The longer I went without writing, the more I felt this pressure to start again. So I stayed offline to regain some calm and gather myself. Perhaps a lot longer than I ever expected to.
I feel like I’m dusting off an old book and rereading it for the first time in years. I’ve missed writing and sharing my ramblings on the big, scary world of the internet. Yet as scary as it is, there’s something so comforting about writing on my blog. It’s like my safe journal, that just happens to be open for all to see. So perhaps it isn't really that safe at all.
But I’m back and hopefully this time there won't be any year (or 2) long breaks in the distant future. In reality though, I never stopped. I’ve been writing blog posts on my notes at 1 am when my mind feels lost or my chronic pain is causing insomnia. I’m scared to jump straight back in, without acknowledging my disappearing act. I don’t want to pretend like I never left this blog abandoned in a sea of uncertainty. However, I want to start again and share all it is that I have written because it feels silly to pack it all in just because I feel like I’ve been gone too long.
As much as I feel like it was only last week I posted (positive thinking to make the 2 years of neglect not seem too bad), my life has taken so many unexpected turns the last couple of years. So much has changed that I didn’t want to dive straight into it all within my first blog post. These things deserve their own post and explanation. But somehow with everything that’s happened, it’s lead me back to writing. So I’m taking it as a sign that I need to give this another go. But for now I'm going with the flow, no set date or schedule that I'll be publishing posts, just when it feels right.
Part of me thought of shutting it down and never logging on here again. Maybe that would be easier but it wouldn’t be what my heart was telling me to do. I’ve spent the last couple months feeling like I’d left it too long and there was no point writing on here again. Clearly not realising that my fear and anxiety were making more time pass by. Anxiety has stopped me from doing a lot of things in life but writing this blog was something that gave me purpose and happiness. I want to fill my little corner of the internet with passion and purpose again.
So here I am. And I’m trying. And I’m writing again. And it feels like I’m meant to keep sharing my thoughts with the world- even if they aren't read by many.
Coming back to the blog during a pandemic feels like a strange time to start connecting with this space again when there is so much heartache and struggling going on in the world right now. Yet, this space has always been about sharing my thoughts, anxieties and feelings no matter what is going on and I think the current circumstances is what is bringing me back here for comfort. I hope wherever you are in the world right now, that you are keeping safe and you are keeping hope in your heart that normalcy will soon return to our lives.
Suicide is not a dirty word. It is not a word filled with shame. It is not a word filled with disgust. It's a word filled with pain and desperation. Desperate for the thoughts to vanish in the blink of an eye. Gut-wrenching pain tearing through your body clinging onto every damaged part. Feeling suicidal is earth-shattering, every single part of your life is torn apart to shreds right in front of your eyes. Your mind is torturing you, pounding down on you until there's nothing left. No hope, no foreseeable future, no dreams or wishes. Everything seems hopeless, that is not shameful nor disgusting, it is pain beyond comprehension.
I have been sat on my bedroom floor, sobbing my eyes out with suicidal thoughts racing through my mind more times than I could possibly count. Gripping my head, rocking back and forth, begging the voices in my head to stop. To just stop for one second so I can gather my thoughts. There is no way out, there is no light to be seen and there is no hope to be felt. Does that make me a bad person? Does it make me weak because I wanted the pain to stop? Does it make me destined for hell because I have wanted my life to end on countless occasions? No. No. No. Contemplating suicide doesn't for one second make me weak and my goodness I wish I had known that in the moment.
The depression overpowers every other organ in your body and no part of my mind could sift through the thoughts and rationalise any of them. Every suicidal person is not destined to commit suicide and to think that we are all helpless is backwards thinking. The time to do something is before. It can always seem okay until it's too late. Never think you're asking too many times if your friend is okay, if your gut is telling you something is wrong, I bet you're 99% right. Sometimes suicide comes out of the blue, no warning, no drastic changes beforehand, nothing that could have prepared you or prevented it and that is the worst of the worst, but I am still a firm believer that there is always something that could be done. Always, whether it's big or small. I remember one day I was feeling extremely suicidal, pills in my hand and out of the blue a friend I hadn't had heard from in a while text me "hey, haven't heard from you in forever, you doing okay? I love you, remember that" and that was enough to stop those thoughts from turning into actions. Don't get me wrong, sometimes small things won't make it stop but it will make you think for 2 seconds and occasionally those 2 seconds is all you need to keep fighting.
I've been to the place of 'almost very nearly too late'. Several times and I've always been saved. There are different types of being suicidal, I think you can be passively suicidal and actively suicidal. I can be suicidal but go about my normal life, push the thoughts to the back of my head and still realise I am loved. I can be suicidal, lie in my room all day and really struggle to see how anyone could love me. Then there's the kind of suicidal where it's gone too far, I'm already thinking of what to do and no rational thoughts are being processed. I have sat in the doctor's office countless times because there was no one at home and I knew for a fact I was not going to keep myself safe. That was a huge step, when I realised I could get help when I was in the moments of "it's gone too far". I didn't have to pace up and down the house, frantically trying to think of anything but downing a whole bottle of pills. Suicidal thoughts can make it feel like it's already too late and that you shouldn't help yourself, but listen to the teeny tiny voice that is ever so slightly whispering to get help. That's the one that will save you.
The conversation about suicide needs to be had, not just when it's happened to a celebrity or someone we love, but all the time. Even at the times we think it's not going to matter because that is when it's sure to matter most. It is simply another word that we need to start detaching from the stigma and say it as openly as we say other things. It's uncomfortable to hear, it's uncomfortable to try to understand, I get that but it sure beats the alternative. Suicide is not a dirty word. It is not a word that should be filled with shame. Being suicidal doesn't make you weak or selfish, it simply means you're hurting and there is never anything wrong with pain. There was a time when I would never have admitted that I felt this way but I'm now open and honest about my struggle with being suicidal, talking about it takes away the shame of it.
I know how it feels, I've been there and it is so impossibly hard to climb out of but sitting here today, I'm so thankful I listened to that little voice every time. You may never feel like there's enough to hang on to, or people that want you around but I promise you there are. I had been suicidal a couple times a week, or more for the best part of 5 years, constantly feeling like I wanted to end my life because my depression convinced me that was the best option. I never expected that I would go months without feeling that feeling, but here I am and it's been a long time since I felt any kind of suicidal and it feels like it was a lifetime ago. It's made the hellish fight worth it. I can still close my eyes and remember those moments and taste the anguish I was in but I use it to carry on recovery, to never stop fighting for myself. Please don't stop fighting for yourself.
If we were sat down, drinking a cup of tea and eating biscuits and you asked me how life was at the moment I would say.....
Chronic pain is kicking my butt, metaphorically and quite possibly literally. I had a couple of really difficult weeks a few weeks ago, and things have subsided slightly but I'm constantly aware of a flare potentially being around the corner. I have been having LOTS of hospital appointments, doctors appointments and tests the last couple months, it's been draining physically and mentally. It's frustrating, although some things are being figured out (after many years!!), I feel as though some things have gone backwards about 50 steps. Living in pain is becoming harder to hide, even though I still feel like I can act well most days. I’ve always been good at hiding my battles but when they become noticeable to the outside world you realise you aren’t as good at living the lie as you thought you were. I think my body is just exhausted from the last flare up which lasted for over a month. I always appreciate the moments where the pain is manageable and not in a flare, where everything hurts ALL the time.
My depression has popped back up again in the last couple weeks, out of nowhere but I'm taking it as it comes. It emerges one day, engulfing me whole and then the next day I feel slightly less in the dark. There's been a lot of random uncontrollable crying, long naps and shutting myself in my room listening to the same song over and over again. It's been fairly draining and as always with depression, it takes you by surprise and appears when you least expect it. It's up and down right now but that's okay, that's better than it being just down. There is still a fight whether you’re in the midst of it or in recovery, but it’s a fight worth fighting.
Certain aspects of life that are uncontrollable are causing me quite a bit of stress which could be why my depression has made an appearance. My anxiety has always been there but at the moment it's louder than it usually is. There will always be factors and events that happen in life which you can't control but when you have anxiety and depression, they feel 10 times worse. Uncertainty and stress are two things that make my anxiety a lot worse. I'm cautious of the fact that I'm no longer on medication so a normal (for me) level of anxiety could be amplified at the moment.
Starting an online uni degree was the best choice I could have made for myself. I so desperately hung onto the hope that my body would magically rid itself of this illness and I’d be able to go away to university like everyone else. The reality is I can’t do what everyone else can because my body is not able to. I kept putting my life on hold in the hopes things would get better instead of doing the best I could with what I had. So that’s what I finally did- I may not get the real life experience of it but I’m getting the education and for now, that is enough for me. I’m doing something for my future regardless of how may health may be. It feels good. I'm nearly done with my first year and I feel like I'm going in the right direction.
My 21st birthday is tomorrow (!!) but due to the whole up and down of my depression, I'm not as excited as I thought I would be which is okay but disappointing. I'm hoping the whole "it's your birthday" thing will make me excited tomorrow and give me a reason to enjoy the day. I so desperately want to be happy but it's not something you can force when you're feeling depressed. I've had a great day today going to lunch with my best friend and got a ton of school work done (being productive and accomplishing things really helps my depression) so I'm hoping I'll wake up feeling great. I've just read the post I wrote last year after my birthday and reading that has reminded me how far I've actually come, even if I'm having a rough couple of days.
I hope you all have a great rest of the week, whether you're taking part in this weeks festivities (pancake day and Valentines day) or not. I'm going to use this half term week to rest, catch up on school work and do lots of self care!!
Hey there, I'm Jasmine, your average 23 year old working in childcare and living in England. Maybe Tomorrow follows my journey living with mental health issues and multiple chronic health conditions, all whilst trying to have some fun along the way.
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