The Difference between being Well and Chronically sick.

One of the biggest problems us Chronically ill face is the lack of understanding from those who don’t suffer the same afflictions. Which, I get it. You can’t understand something like this. Something that you’ve never been experienced before and sounds so alien from your healthy person life.

I feel one of the best ways to describe it is through Christine Miserandino’s Spoon theory. Unlike the average human being us chronically ill have a limited number of energy reserves or symptom tolerance in a day. And yes technically we can go over those in a day, but if we were to do that then it would leave us with less spoons for the next day or more. Until we were to just completely stop.

Image result for spoons

Now imagine each daily activity takes away a certain number of these spoons. Even the most simplest of them.

Lets start with getting out of bed. Yes even that takes spoons from us. Now lets think of taking a shower, that can also take a lot of spoons from the Chronically sick. Even more if we were to wash our hair, or shave at the same time.

Now you’ve got the gist of things you can see that even after completing tasks that are mindless or even refreshing to the average person we end up severely compromised.

When you have a chronic illness you are constantly fighting. Constantly pushing through relentless pain and fatigue. Not to mention the whole host of other symptoms that we can sometimes face with a chronic illness.

Yet most of us look perfectly healthy and able on the outside but please understand that this is not the case. Our body is fighting a war on the inside which is invisible to everyone looking from the outside.

This is why we may not want to socialise. It’s not even that we don’t want to. Mentally we probably do. Mentally we are probably bored of feeling physically capable of nothing. But physically we can’t do it and if we do it will just continue and heighten our daily suffering.

And we don’t want that. We don’t want to end up back at our worst for weeks or even months on end when we can prevent it. Most things in life are not worth that. Not atall. Related image

So please try to gain a little understanding before you judge us or frown upon out attitudes or work ethic. If we say no. Please don’t take it personally. It’s not you. It’s that our bodies are fighting a war that you could never understand.

We just don’t have the same unlimited number of spoons that the average healthy person has. We have a limited number.

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The reality of being mentally ill and having an Undiagnosed Chronic Illness

Mental illnesses often go hand in hand with Chronic illnesses. It’s part of the territory. It makes a lot of sense really. Through all the fear, the confusion, the loss of life quality, friends, supporters. Having all of your peers move on with life, seeing them progress and there you are. Still sick. It makes sense that the majority of people with a chronic illness also have some sort of mental illness.

Having both anxiety, depression and at least one diagnosed chronic illness is a confusing situation to be in. It’s denying that your sick, feeling invalid because you don’t have a diagnosis but not being able to speak to doctors. Not having that magic way of talking to them to make them test you, diagnose you and take you seriously. And actually just freezing up and panicking every time you see one.

It’s feeling guilty for not working because you have a few good hours, days, maybe even a good week. But the reality is you’ve spent so long stuck in bed from grinding fatigue or unable to focus and be a good personality to work with from severe pain or nausea that you’ve fallen into an even deeper depression than you were in before hand.

It’s feeling like there’s no out because you don’t feel empowered to fix it, so it will never get fixed. It feels like your always going to be stuck in this cycle of physically ill, depressed, anxious, physically ill etc. It’s an incredibly terrifying point to reach. You know there’s something wrong with you every day and chances are it’s only dong to get worse because of your inability to do anything about it.

Which may be why you still find yourself denying it. Because you don’t want it to be true. You want a normal life. You want to be where your many a lost friends are now. Talented beyond belief with jobs they are actually getting successfully paid for. Friends to socialise with, a family they are close to and on track for a first class degree. But then you also don’t want to get better physically because being physically ill gives you an excuse. To not work, not do x,y or z. All of those things which trigger your anxiety. That historically you haven’t been able to cope with. Even if the main reason of not coping is chronic illness related. Things like applying for jobs give me so much anxiety that I can get interviews and then not go, not accept. Because what if I get the job and can’t manage or even worse what if I just sound like a fool and people question why I even bothered trying.

Having an undiagnosed illness and anxiety is having a history of not being believed, being called an attention seeker and so the second two friends say “Maybe she’s lying.” You worry there talking about you. Especially when it has seemed very off between the group of you over the last few months. With you being the outcast.

You feel like you have to act sick even more now. Or be really ill all the time to be justified. You fear your not sick enough and your just being weak and pathetic. Life turns into this ridiculous little merry go round.

You’ve had your trust broken so much, by so many that you’ve developed methods of isolation and telling yourself they don’t like you just to protect yourself from being hurt when they eventually snap and tell you everything they hate about you. Everything that’s wrong with you as a person. And that makes you feel more alone in this battle.

You have no one to open up to about your physical battles and internalising it all. Only having your irrational voice and you as your own cheerleader means the physical battles take all the more of a mental toll.

You question whether it’s just you. Or maybe daily pain is normal. You constantly fear judgement from other because your not good enough, not doing enough, not trying enough. And you feel like a poor excuse of a human. Your physically ill, but your not that physically ill and maybe your just making excuses.

Your left in a place of feeling completely and utterly alone. With no way to express how physically hurt you feel. Because physical pain has become the norm.

Gaining Perspective, learning to go easy on myself while I can.

Hello, so frequent readers of my blog will know that I have recently been going through a lot of feelings of guilt, weakness and denial. But recently I feel I have found some perspective or atleast I am starting to get over those feelings for the time being.

I guess it comes from the perspective of others, and those others not being my parents. Whom are like they are and pushy like they are about certain things, one being me having a part time job and working that job regularly because they worry. And because they don’t understand. They don’t understand that I am chronically ill. Heck I don’t think they even know. I know I’ve never told them. And not only that- they don’t realise how full on being a law student is. Especially if a) you want a good degree classification and b) you’re not super intelligent. Yeah, life was all fun and games in first term. I did manage to study adequately and for the last couple of weeks of term, commit to rehearsals,  work a couple of shifts and socialise a lot. Yeah, I did push my body too far. I was so ill and my chronic illness was so bad, even for weeks after term ended but I did manage to do it all.

But now I’ve realised, and this is because I’ve realised if I do work, I need a new job. And all Other jobs will provide regular commitment of hours that it’s just not going to be practicable.Not for my health and not for my grades. More not for my grades to be honest. Because I am going to have to start revising for exams now, start making proper notes and taking things more seriously. Which takes up time, it means I do have to do some studying over the weekend, when before I had weekends free to netflix and chill or go on autumnal walks.

And for a while I beat myself up over that, beat myself up for taking the easy way out. But the reality of it is – as long as I stick to some sort of budget I don’t need the extra money this year. So why would I add the stress and strain of regular working hours on top of uni, drama (the love of my life) being chronically ill and maintaining a social life. I might look out for when uni are next recruiting student ambassadors so that way I can still have some income but until then. I will quite happily not work regularly and try not to feel shame for that.

Fact of the matter is I am a productive uni student, not the most productive but I am productive and I do try hard and work hard. So why should I feel guilty about not doing enough? When I do do enough.

“You Look Well”

Hello again readers of my blog. Today I’m writing about the “You look well” or “You look healthy” or any other variation of the two comment that people quite often make.

The comment that many people with eating disorders find triggering, they find to be one their head twists to mean “Your fat” “You’ve gained weight.” or “Your getting a litttle chubby.”

But that is by no means true and not what is meant when loved ones comment these things. The “You look well” comment is meant as a compliment not as anything else your eating disorder may convince you so I urge everyone to see it as a compliment.

I myself got variations of the “You look well” comment on two occasions yesterday and I could have let it really trigger me, especially seeing as that morning I had stepped on the scales to see a ridiculous weight gain in the space of a week. But there’s no need to let it trigger you or set it back in any way. Fight against that voice in your head and think about it rationally and logically.

Looking well is a good thing. It’s a compliment.

Lets put this into context with my case from yesterday. I got the comment from my dad and my aunt. The last time my dad saw me was nearly 2 months ago now. I was borderline underweight in terms of BMI, so underweight in terms of where my body likes to sit. I was majorly stressed about possibly having ovarian cancer, had no appetite and wasn’t feeling all that great. The last time I saw my aunt was nearly 3 months ago now, I was feeling ill with probably endo pain and again slightly stressing over possibly having ovarian cancer and under my body’s natural set point range.

It is a damn good thing that they think I look well! It shows I am healthy, well to some extent healthier than I was back then. And asides from the physical aspect of it, because there is a very minimal physical change in my health in terms of symptoms. We should want to look healthy. And healthy doesn’t necessarily mean skinny. For most of us healthy does mean having a bit of extra body fat and not being at the minimum possible healthy weight for our height.

I feel as though especially as a vegan. I would rather look healthy than not, just to help in some small way to promote the lifestyle rather than turn people away from it.

So fight those eating disorder voices. Because looking well or looking healthy are all good things and in no way means you need to start restricting again!

Mental hunger?

Hello again, back with another eating disorder recovery focused post because since my period ended (so friday) I’ve been crazy mentally hungry but the physical hunger still isn’t where it was before I started feeling sick again.

I feel like if you google mental hunger you get given a series of articles about how to ignore your mental hunger or emotional hunger as it can sometimes be called. It seems as if having mental hunger is sinful. But that’s not true. Mental hunger especially during and after a period of restriction or illness is totally normal and in reality, is just our body’s way of saying it needs food, it needs nourishment to get us out of that caloric deficit we somehow ended up in.

There’s nothing shameful or sinful about it.Which I myself have found myself feeling in the past, like I was greedy for eating despite no physical hunger. Yet what I failed to realise is  Just like physical hunger, it’s something that we should listen to and we should respond adequately, giving our body’s the food it needs. The energy it needs because that’s all food is after all. It’s energy.

Normal people don’t always wait until they’re physically hungry or physically hungry enough. Normal people do respond to mental hunger at times because that’s what being carefree around food and eating as you fancy is. It’s being able to respond to all hunger both mental and physical.

So I encourage everyone experiencing this to embrace it and accept it. Your body wouldn’t want the food if it didn’t need it.

 

Feeling like a failure

We all know a lot of people with eating disorders are also perfectionists and I am not one of the exceptions. The problem is I see most people in the recovery community meeting the overly high expectations they set for themselves. Which, don’t get me wrong is great for them, but it doesn’t help much when your sat hating yourself because you didn’t get those grades. You didn’t get the straight A*’s you were predicted, you didn’t even get the A*AA you needed for your dream university. You actually didn’t get the grades required for your insurance. And they let you in anyway, but that’s not the problem. The problem is you didn’t do well enough. You didn’t do well enough to meet those expectations you’d set for yourself. So you hate yourself and you feel ashamed of yourself although deep down you know you couldn’t have tried any harder and whatever happened happened.

You find yourself comparing your failed results with others, others who did get those 3A*’s you we’re supposed to get, maybe even 4 with that A or A* in EPQ to top it off and it fills you with hatred. Even more so when the other brags on facebook about her daughter who for these straight A’s and had a part time job and trained for sport multiple times a week. You did none of that. You had no responsibilities but you still didn’t get good enough grades.  It fills you with hatred because your jealous and you hate yourself. It fills you with hatred because you have to be the best. You were the best. And now you’re just mediocre. This is why comparing yourself to others is so harmful yet I find it so irresistible at the same time. It’s a hard habit to break really but one I know I need to break if I’m ever going to have any friends and ever come to accept myself. 3B’s and all. Just typing that. 3B’s. It makes me feel ashamed of myself. To me, 3B’s isn’t good. But if anyone else had got that I would congratulate them. If my best friend had got 3B’s I would be pleased for them. So why isn’t it good enough for me?

This is the perfectionism trait that gets to most of us wth eating disorders and it can make or break us. The positive of the perfectionism trait is that it can lead us to achieve amazing things. On the other hand, it can lead to you not doing that essay or exam because you know you won’t achieve well enough. You know you’ll never be good enough. It can also lead to burn out. And lead to your whole world tumbling around you when you tried so so hard but still didn’t achieve those perfect grades.

You try to tell yourself it doesn’t matter but it still does. You try to tell yourself it doesn’t define your worth but it does. Nothing can change how much of a failure you feel like you are. Even when other people seem proud of you. And this is why  I feel like the education system can be so dangerous and harmful to people, especially perfectionists.

In both high school and college I’ve been told everyone can et straight A*’s if they work hard enough. And I’ve been told it by plenty of teachers. IIt really is quite a dangerous thing to say I believe because it ensues the belief in perfectionists even more so that if they don’t get the top grades there somehow failures and it somehow means they didn’t try hard enough. When really that is not true, especially in perfectionists who do try hard enough. it’s because some people aren’t clever enough to get straight A*’s. Some people may have undiagnosed learning difficulties, gone unnoticed because they were getting good grades all their lives. (I honestly think  I have some mild form of dyslexia and it’s only become more apparent since starting my A-levels, and especially during A2 year.The only reason  I haven’t got myself tested is because I’ve heard it costs £400.) They may have just had a bad day, week or year for any number of reasons. Or they may have been to a college with a very bad quality of teaching and no one got straight A*’s. (Again me)

The point is there are countless numbers of reasons as to why these self-set expectations may not have been met but the perfectionist will still beat him/herself up about it because the fact hasn’t changed. In the mind of the perfectionist they have still failed and failure is such a scary thing.

I’m not going to type here about how it’s all okay if you haven’t met your grades or everything happens for a reason because I know it changes nothing. But what I am going to say is that we all need to learn to accept ourselves, go easier on ourselves. We can’t always be perfect or the best. Self-acceptance isn’t easy but it’s what needs to happen so we can be okay when things don’t go to plan.

 

 

Long needed update

Last time I posted I was going to uni to study law, although having doubts about my decisions in doing that. I have had ever since applying.

The last few weeks have been a  bit of a rollercoaster ride, what with my exercise addiction being worse than ever and my parents being not very nice to me in general, mum speaking in that tone of voice she does aad calling me things such as a “nasty piece of work.” and saying I’m being all “me me me.” On top of that they’ve both been super triggering, mum on yet another one of her diets and dad always commenting on what I’m eating, how much I’m eating and calling people “greedy at every chance he gets.

It’s some sort of minor miricle that I’m still a half sane indavidual, atleast trying not to relapse into anorexia.

I did get very close, especially over the last few days.

But over the last few days I’ve come to know myself a lot more. I’ve fully realised  am not ready to go to uni this year and I do not want to study law. I’ve come to realise my true passion in life is outdoor adventering and climbing more specifically and so in the future I want to do something surrounding outdoor adventuring. Whether it’s just being a climbing instructor or working at a place like PGL. If I go to uni it will be to do outdoor adventuring or something similar. And maybe one day I’ll open my own business. We’ll see…

The problem is the taking steps to achieve this goal. What i thought was social anxety before, I’ve now come to realise is more a fear of rejection. Going to church to ask the minister to sign my passport application, asking lecturers for references… I’m scared they’ll say no.  I’ve had so much rejection in my life that I struggle to believe they’ll agree and say yes to these things… because why would they?

I’ve been struggling with overexercise because it’s a distraction. I’ve been restricting because I don’t know how else to cope. I’m terrified of the adult world, terrified of failure, beng looked down on and living on benefits.

I’m so terrified of having no life that I’m using these unhealty coping mechanisms so I won’t have to face that.  won’t have to face it because I’ll be dead or in hospital.

Now I’ve identified all of this I really hope I can sort this out, rationalise my thoughts and take steps to achieve my goals in life.

Stay strong and keep fighting,

Hannah