ME Awareness Day: Hayley on Life With ME

Today is ME awareness day and to be honest all the plans I had for this month (in fact, no, the last couple of months (strike that to possibly the last 11 years or so if we’re being totally honest) haven’t exactly gone to plan, well my plan anyway. And in regards to raising awareness and taking part in this year’s challenge it couldn’t be more of a diversion from the plan I’d set. This is common with ME and sometimes things do work out better than you’ve planned other times not so much, at all. That’s simply how it is. So adapting as we do I thought what better day is there than this to give you an update on my life with ME and highlight some of the invisible aspects of living with it.

If you have never heard about ME before it’s short for Myalgic Encephalitis or also known as Chronic Fatigue Syndrome. It comes with a whole variety of symptoms that vary person to person but the most common and biggest symptom is fatigue (not just feeling tired, there’s a huge difference) and something known as post exertional malaise. I am living with very little to no energy on daily basis and any activity this includes taking a shower, eating a meal or even just having a conversation can be too much and I get payback in the form of a spike in symptoms usually 24-48 hours after doing something. The simplest way to describe it is like living with a permanent flu you can’t shake off (and I mean the type of flu that leaves you in bed for a week or so, not a bad cold).

If I were a mobile phone or tablet I’d be surviving on that 5-10% red bar level of power, trying to get all the necessary things done before it stops working all together and cuts out. Then when it comes to recharging I have a faulty charger (which has no refund or exchange policy) and no matter how many hours it’s plugged in for I still cannot recharge above the 10% mark. Oh and to top it all off, the battery level will fluctuate when it wants too. I can do one thing one day and suddenly go from having 10% back down to 2% in an instant. It’s highly unpredictable. I also have sensitives to noise, smell, crowds and lights, muscle and joint pain, and memory problems.

I’ve had it 11 years now and throughout that time, in short, it’s ranged from being severely bedbound to living virtually symptom free to back to being bedbound and attempting a process of recovery again. Currently there is no medication to cure it and you live by trial and error to see if different things affect or help you along the way. I have to say throughout my time I’ve trialed a lot things and although it’s not perfect I have developed things that help me and have provided small improvements, so I am forever hopeful of getting back to those stages of living virtually symptom free. That said, daily life is a continuous struggle which is often made harder because of the invisible nature of ME/CFS. This side I’m addressing a bit more later on as more recently it’s been a bit more relevant to my life, but if you want to know more about how I live with my condition and my story feel free to scroll through the social media posts and head to the about section of the site. Essentially, it’s an invisible (because I look pretty normal and healthy with it) debilitating chronic condition that I will probably have to manage my entire life with still very little known about it and little understanding.

Back to more recent events, if you’re on Instagram or Facebook you’ll know I have been virtually none existent on there lately due to my health. I first want to say a really massive huge thank you if you’ve taken part in the challenge! I really do feel guilty I haven’t taken part yet, especially when I created it. It feels a bit like hosting an event but then not turning up or acknowledging it, it’s not ideal and quite honestly it’s the most frustrating thing however I haven’t done any art in over a month now (despite the lists of ideas I have) and with life stuff requiring the minimal energy I do have I just don’t have enough to spread across other things too. This is the reality of Spoonie Village and M.E.

I often get lovely messages from people asking how I manage it all, or very kindly telling me how amazing they think I am for coping with everything Spoonie Village whilst I have ME and it really is very kind. I appreciate the sentiment and thank you for your kind words, but the reality is I struggle. I’m no different and in all honesty feel far from amazing with it all especially at times like this where I haven’t been able to do anything for so long, even just checking in with you all and keeping up with Messages. I don’t manage it all because I can’t. Things have to go slower, I have to take my time and above all, things sometimes just get missed completely. I’m not alone doing it all either so don’t be fooled by social media, even when I do post regularly it may look like I cope with it all, I don’t.

The reality is, M.E doesn’t allow me to do it all and I know I can’t. It’s the hardest thing I’ve ever had to come to terms with since this relapse a few years ago, that I will just not be able to do it all how and when I want because listening to my body and what it needs is more important than me pushing through and doing it all. I need breaks, I need rest and most of all I need to listen, understand and help my body recover. It’s not easy and I’m not amazing, I am just another person trying to navigate a life on limited energy but the harshest part is I’m living with a brain that produces 50 ideas before I’ve even blinked my eyes open (because it can take a while to actually come around once I’ve consciously woken up haha) and my brain assumes things take a lot less energy than they do in reality. So it’s not until my body begins to play a part in executing said ideas that it finally realises I was right in telling it to slow down. Or sometimes I overestimate my own limits and my body reminds me I overdid it but, I can’t always recognize where the limit line was. Complicated business handling your mind, body, spirit with M.E! It’s tough and I know so many of you are exactly the same.

We’re driven, determined and have so much we want to do but we’re in the slow lane, just doing what we can when we can to get by and find some kind of life. But remember, it doesn’t mean we don’t get there! Or that when we do it has any less value! We will get there, we will do those things and we will carve out some kind of life. Admittedly it might not be exactly how we envisioned but that doesn’t matter. The fact we do is what’s important. What matters is we will get there and along the way we find inner strength we didn’t know we had, develop the deepest gratitude for things we took for granted and above all learn more about ourselves in the process that we’d probably otherwise not.

I’m not saying it’s fair we‘ve been forced to learn so much in such short spaces of time. It’s often completely overwhelming on top of the symptoms but, we do learn to adapt, break unhealthy habits and build new versions of ourselves on more solid foundations which, ultimately (despite maybe not feeling like it at the time), is for our best in the end. It doesn’t matter how many times you have to adapt or rebuild yourself, the fact remains that you have the strength to and that just like the Phoenix you come back stronger each time, with more fire in your belly and the ability to transform your life despite the circumstances you find yourself in. That is also the reality of life with M.E.

So what’s all that got to do with my current situation? Well the reason things haven’t gone to plan is because ME does whatever the hell it pleases and be damned the consequences! This is one of the biggest things I’ve found people that who don’t have ME find most difficult to comprehend or grasp. The notion that the illness fluctuates constantly along with being unpredictable, unreliable and having a down right unforeseeable nature. You can be the most organised, plan for every eventuality type of person in the entire universe and still ME can throw you an unknowable curve ball and flip the best laid plans on their head.

I’m not even talking big plans, I’m talking basic life stuff healthy people take for granted like when to take a shower or being able to make a phone call and despite all the will in the world plans are out the window because something relating to the illness crops up that you’ve not considered at all, despite the other 20 millions things you have, and suddenly you’re having to adapt to this new version of life all over again, and this can happen daily, weekly, monthly heck sometimes even hourly. That’s what I’ve currently been living with. Showers have been inconsistently sporadic because my energy has needed to be placed elsewhere. It’s a life of “if…then...” and doing your best to sacrifice the right thing in order to not suffer as much. The slightest of things have been so overwhelming because even if I plan rest time or plan what I’m doing I still don’t know what I’m facing each day. Some mornings (I say morning, but it’s more like mid morning/early afternoon) I feel like utter death and by night time I’ve improved a bit but who knows how I’ll be the next day. It has literally been all over the place and for the first time in a long while I’m just going with the flow and praying, hoping, all fingers and toes crossed it isn’t going to get any worse because I’m currently in a situation where no matter what I do it has equal chances of resulting in well, anything! Minimal payback, huge payback, new symptom, odd sensations who knows what I’ll get so I figure I’ll just try and live through it somehow and hope for the best.

It’s like at school learning the rule of 3 when doing experiments, if repeated 3 times and the same result occurs each time then it’s typically accepted as the outcome. I have done the same levels of activity under the exact circumstances and never had the same repeat of the consequences. Literally anything can happen with M.E which means life gets very frustrating and often very overwhelming fast, hence why I’ve had to take a break from everything other than coping with life. I am hoping soon (it’s always soon because I can never give a time frame!) things will even out a little and I can manage to do a bit more. They say good things take time and when it comes to all things Spoonie Village I am sticking with it. There are so many plans, ideas and hopes we have to share with you all, but it’s going to take time with M.E and Me.

Another thing I also want to address (and essentially put out there from my perspective), is the invisible nature of this illness. Lately, I assume because I was beginning to make small progress then seem to have been shoved back again, people struggle to comprehend that I literally use my energy to get through the day and cope with the most basic of tasks, the things they wouldn’t even think twice about doing. M.E has robbed me of many things, but the most basic of luxuries are the ones I suppose you could say I am not believed about. Such as the fact that I can’t really choose when I’ll shower, I have to wait and see if I’m going to have the energy. I can’t cook a meal and then eat it, it’s one activity or the other because I won’t always have the energy for both. So with running Spoonie Village at the moment I have no spare bits of energy to invest in drawing or creating because it’s taken up with living.

Throw in things out of my control like my pets getting ill and the stress of taking them to the vets and arranging that is overwhelming. I have often thought it would be lovely if my M.E took itself for a little holiday sometime soon so I can live without it. Yet that’s the thing, it doesn’t no matter what I do or how ‘normal’ I look, how I feel on the inside doesn’t change or go away. I still feel like death, even when I’m smiling and laughing! M.E is a disability, and I’m often invisible because I’m only seen when I’m feeling well enough (not feeling better!) to go out. I will sometimes push my limits, knowing they will push back but I’ll pay the consequences because I am young and still want to live some sort of life.

Due to the invisible nature I find often there are three stances (or rather assumptions) people have about how I live with my illness. One is that because I have this illness which renders me housebound majority of the time then, I shouldn’t really be going out or attempting to live because as it’s been pointed out to me on occasion by people I don’t often see “I thought you were too ill for [insert event/activity]”. The honest reply is I am too ill for it but if I’m going to stay sane then I will need to look forward to something and the reality of my life is it’s a day by day decision process and today was the day! Just because my symptoms may appear invisible to you does not mean that as a person I am invisible.

The second is that because you actually manage to do something, that magically means you are now fully better and apparently *poof!*, no more illness for me! I’ve encountered this a lot more recently too. Since I’ve been focused on balancing out my life this year because it has been so awful, when I have had better days I want to make the most of them, and attempt to inject a bit more of the ‘fun’ side (yes, for me that can literally mean going the supermarket and doing my own shopping like any other normal adult does).

However, you then fall into people’s mentality trap of “oh, but you did it yesterday/last week/whenever?” Or “oh it must have been lovely for you to do x, y or z” all coded statements for “you’re not as ill as you say” or “you must be doing much better then”. The best is when it comes to people planning things. You’ll hear “well it’s been planned for a while” therefore meaning I should have managed my illness well enough to ensure it behaves for the event I’ve advance warning on. My response to that is sorry to disappoint but ME doesn’t like that rule, doing it once was more than enough it tells me by way of increasing my symptoms and asking me not to do it again for a while! Also, the reason I may have done it yesterday/last week whenever is I’ve been putting it off for so long because of not being well enough that sometimes things just have to be done. It doesn’t mean I’m no longer ill, it just means stuff needed to be done and I had to get it done! I’ll still pay for it later.

The third is that “you’re looking really well”. This is the most crushing thing I think for living with M.E. People forget I actually haven’t seen them for a few weeks or months (sometimes longer) and I looked pretty much the same back then. It can be so invalidating of what you’re going through. Yes, I look like a functioning human, I have clothes on, I made myself look half decent to leave the house but (and it’s a big but!) I am not well regardless of what I look like. You won’t see me crashing hard when I get home or having unwashed hair for the next week. Just because I look healthy and I’m upright walking about, doesn’t mean I am. It doesn’t mean I can respond to your emails super quick. It doesn’t mean I can take care of myself like any normal adult my age does. Just because I don’t fit the image or perception you have of what a disabled person looks like, it doesn’t mean I am not. This isn’t just related to people who know you but with government benefit assessors continually sending reports back to people telling them “they didn’t look fatigued, in pain or anxious enough”, it really does invalidate so many disabled people simply based on appearance. You’d think in 2019 we’d be able to get past image and listen to people about how their illness impacts their life on a daily basis. Sadly though, often it’s not and this is the reality of having an invisible disability and it’s wrong.

Living with an invisible illness is hard enough as it is but implied statements and judgements like this are actually rude and so unhelpful to people with invisible disabilities such as M.E. I know too I am preaching the converted often here, you too have probably lived with this, but on the off chance you are someone reading this who has never heard about it I hope it does provide an insight into how difficult the illness is but also the extras faced on top of all that. I don’t want to enter into complaining nor do I expect people to make grand exceptions for me, but I