My name is Emma, and I finally understand the word ‘struggle’

Recently I feel all of the daily prompts have really been aimed or tailor-made for me. But at the same time I feel like I am constantly writing about the same stuff, and that it all very samey and it makes me sound like a moaning cow bag.

Today the prompt we have been given is “Struggle”

Now I could once again write at length about how my life is a daily struggle. But I know, “…try to think of something original please Emma.” I try and I think of things to talk about but all I can talk about is what I know, and at the moment that is this. It is the battle I have with my body on a daily basis, and the struggles I face to live a remotely normal life. It is easier said than done when what was once a simple task now needs mental preparation.

You should all know by now that I like to include a handy screenshot of the definition of the word or even a nice inspirational quote, just to really let you know where this post is going. So here you go, here is what Google uses to define “Struggle”

For a word that is used to describe a broad spectrum of things, from fights to in ability to cope to make someone else’s harder. It is a word that is also thrown around a lot, suddenly situations are being made to sound worse all by the word ‘struggle’. A minor inconvenience can be turned in to a great obstacle by simply adding “Struggle” in there in some form.
“He’s been better” and “He’s struggling” are often used to mean the same thing but really they imply to very different things. They are completely opposite. He’s been better would imply that whilst he isn’t 100% he is still carrying on and able to function, whereas “He is struggling” would imply to me that he is barely able to continue on in any shape or form. Maybe I am looking at this all wrong, but I now hate it when people tell me they are struggling when really they are just mildly inconvenienced.

I used to be guilty of over using the word “Struggle.” I was young and naive, and I had nothing to compare it to. I have had a very lucky upbringing, ok I have faced issues in my life but on the grand scale of things I had a loving family, I never went without and I had no unhappy memories outside the death of my grandfather, or the memory of my dad leaving, but really I had never struggled. Not properly. Things were perhaps harder than I would have liked, but it isn’t until you are at the worst that you could even imagine it to be before you really understand what it is to struggle. You don’t have to point it out to me, all of my ‘struggles’ are “first world problems” – I know that compared to some people in this world I still don’t have any right to use the word “Struggle” – but compared to 99.9% of people I know and encounter on a daily basis my life is a struggle.

Again don’t get me wrong, I am not trying to belittle people’s feelings or anything, I am just trying to bring some understanding to people. Since being ill I’ve found it very difficult to get people to understand exactly what is wrong with me. I have no real signs that people can see externally – other than a dodgy shoulder meaning my arm will stop working randomly, or my spine being so bad that if I walk too far or stand for too long I will start to collapse. My body will just go “NOPE!” and begin making me sit down even if there isn’t a chair there…) So when people find out what is wrong with me, it has been hard to verbalise to them what it is actually like to be me at the moment. I find it hard even to the doctors. So this is really why I started this blog, firstly so I could type stuff and swear and get all the feelings I have down and then send them out there in to the ether so that it no longer just rattles about hauntingly in my brain, but most importantly – I do it so that on the off-chance that someone reads it and it maybe changes their thoughts on people with chronic illness, and maybe educates them even slightly when it comes to what we face. If it means that the next time they meet someone with an ‘invisible’ or chronic illness they might just stop for a second and consider the struggles that the person might be going through and either offer to help or even listen. That is the real reason I do this.

Anyway, you know those days when your alarm goes off and you snooze it a few times because you cannot deal with having to get up and out of bed? The times you lay there blurry eyed thinking “It can’t be time to get up!?” “I really should have gone to bed earlier…tonight I will” and so on…? But as your alarm sounds again after you’ve pushed it right until the limit of “No, seriously if I don’t get up now I really will be late” so you jump up and rush to get ready… and then once you get in to work you tell everyone as you make your first mug of tea or coffee that you “Totally need this, you really struggled to get up this morning…” Yeah? Well I wish I felt like that. To me that would be a good day. I wish that when I woke up I didn’t look at the clock and think “just 4 more years!!” To say that I live in a constant state of exhaustion is an understatement. My doctors have threatened to hospitalise me so that I am forced in to hospital, sedated and just left to sleep so that my body can at least attempt to heal. The problem with this is that my adrenal glands do not work properly any more, and it is being suggested to I now have “Adrenal Fatigue.”

“Adrenal Fatigue” I hear you all cry, that sounds made up. Well, to a degree it is, it isn’t a fully recognised medical condition but a lot more doctors are starting to see it as serious condition as it can also lead to conditions such as Addison’s Disease and Cushing’s syndrome.
A quick biology lesson here people. The adrenal glands for those who don’t know control the hormones in your body, and they control some of the most important things in your body. They control your blood pressure and electrolyte balance, the also regulate your metabolism and immune system, they also control sex hormones as well as the famous “Fight or Flight”  hormone… adrenaline.The adrenals are responsible for helping the body cope with stress. This is where my problems begin.
Due to the ridiculous bad luck that I have had in the last year especially, my body went through a very stressful time which caused my adrenal glands to go in to overdrive. They were trying to control my blood pressure which was dropping, my blood which was infected due to the sepsis, control my metabolism as well as trying to get my immune system to fight off all of the infections I had as well as it being confused why I kept being cut open. On top of that I was physically and mentally stressed and my “fight or flight kicked in” becoming the only thing that was really keeping me going, and because I was in this state for so long my adrenals become confused and have effectively stopped working. We can’t work out if they have stopped completely or whether they are running at such a high rate that they are exhausted. We think it might have been that they have just stopped, because sometimes when I go for reflexology treatment and she works hard on the area linked to my adrenals, I will suffer from a panic attack afterwards. It is like the stimulation my reflexology lady has created wakes up the glands and they suddenly realise my body isn’t healed yet and they pump me full of adrenaline and I get dizzy and I can’t breathe and all sorts… leading to a panic attack. I wish however it stopped there. I am also a long time sufferer of insomnia. Even as a child I would suffer from it. At periods where I am most stressed (like now) my insomnia increases tenfold. So I am a chronically fatigued individual with insomnia. Yup, I know how ridiculous that sounds, but it is the truth. This is where my struggle becomes real for me.

My body cannot cope, it is struggling, I make do with as little as 3 hours of sleep a day (if I am lucky) because I cannot fall asleep. I take a medication called Amitriptyline. This is a medication that is given to a lot of mental health patients and to be honest they probably can’t be doing me any harm in that area of things, but at night (and I only take it at night) I take 75mg of Amitriptyline, which I am told is a ridiculously high dose. The doctor gave it to me as a sleep aid. They wouldn’t give me sleeping pills as they can become addictive and mixed with all the other medications I take can be lethal. So I take this. Don’t get me wrong, once I do finally drop off the few hours I get are deep and lovely, but then trying to get my body to start when I do wake up again is a nightmare, but as much as I want to go back to sleep… I can’t. By body is a cruel creature. My health is the closet thing I have ever witness which makes me believe in the Devil.
If I don’t take the medication for a night I won’t even get these few hours, that is how bad my insomnia has become…. which in turn means my exhaustion grows.

I could stay in bed all day, resting, but I struggle to rest. My body and my mind will scream at me that they cannot go on anymore, but I am over come by guilt. That is the one emotion that drowns out all of the rest. Guilt. I struggle, and I mean really struggle with guilt. Guilt is the thing that makes me hate myself and makes me sometimes think of ending my relationship with Harry and setting him free. Guilt is the thing that makes me consider maybe I should just take ALL of the pain killers, all of the morphine and the tramadol and the codeine… you name it I have it, just take it all and set him and my mum free of the burden that is looking after me. Guilt is the thing that makes me ashamed whenever someone asks me what I do for a living or what I do in general or how I am doing. I am then wracked with guilt whenever I actually answer someone’s question honestly when they ask me how I am. I am wracked with guilt that whilst I am at home, Harry and my mum are working hard. I am filled with guilt that Harry doesn’t have the life he deserves and that he could probably have a much happier life, and be with someone who is healthy and wouldn’t be forced to live at home with his fiancée’s mother, because they could afford a place of their own. I feel guilty every single second that I am not cooking or cleaning or doing a chore around the house. I feel guilty every time my dogs look at me when I say to them we need to go home on their walk during the day and I’ve only made it to the end of the road and not the end of the field like we used to. The guilt I feel as I make my mum or Harry spend another holiday day from work in a hospital waiting for more tests or results only to be told that they can’t or won’t help me.

This is where I learnt the real meaning of what it was to ‘Struggle’

I am caught in a vicious loop of exhaustion and my body failing me and guilt. I collapse because of how tired I am, and how much pain I am in, so they tell me off for doing too much and send me to bed, where I will spend the evening and maybe the next day, until they come home and they have to cook dinners or tidy and do any of the jobs I hadn’t done in the day because I was resting. So the next day I don’t rest and I make sure I do everything and this goes on until I collapse again.

I struggle with the guilt but the truth is… adrenal fatigue can lead to Addison’s disease, which untreated leads to death. I’m not being overly dramatic here… I’m being honest.

An adrenal crisis is a medical emergency. If left untreated, it can be fatal. If you think you or someone you know with Addison’s disease is having an adrenal crisis, dial 999 for an ambulance. If an adrenal crisis isn’t treated, it can lead to a coma and death. There’s also a risk your brain won’t get enough oxygen if treatment is delayed, which can cause permanent disability.

That scary little quote comes straight from the NHS website.

I can hear you all now… “WHY AREN’T YOU RESTING OR SEEING A DOCTOR YOU STUPID BITCH!!”

I  can tell you why, and very simply, because I am struggling.

I am struggling to find a doctor who is willing to look further in to my symptoms. After a year of “Just rest and take it easy and manage the pain” they do not seem to be very worried that it isn’t improving. Like at all. I’m actually more tired now than I was when I had been through 3 operations and daily invasive bandage changes.
I have read up about Addison’s disease and I have all bit 1 symptom, which doesn’t always occur in people suffering from it. So maybe I need to get to the point where I demand help.
I am struggling to rest. I am struggling to get better. I am struggling to come to terms with my current state. I am struggling to even think of what my future might be outside of my relationship with Harry.

My name is Emma, and I finally understand the word ‘struggle’