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.

Combined fear and excitment

I feel like this is something everyone has probably experienced in there life. With relation to one aspect of it or another. It’s probably something people with chronic illness feel quite a lot, when trying new treatments. As I am only new to trying actual treatment. Not new to being ill. These emotions, the combination of over such things is very new to me.

So background to the current situation for those who don’t know. I was put on Rigevidon, a combined oral contraception to help with what might be endometriosis. Specifically the pain associated with it. The pain which I learnt last month is more severe than I thought. And current opinions of oral contraception so far are mixed. The 2nd week I was on it I was very crampy and getting endo pain in the one week of the month I don’t normally get pain. I’ve been very nauseous, had headaches and my skin hates it, could go on with the side effects.  But Obviously I had no ovulation pain (had a few little ovulation type pain stabs but nothing like the last few months) and I don’t seem to be getting much pre period pain yet so it’s obviously doing something good considering I only have 3 days left of the 21 days. I am very scared of the effect it will have on my period though. Will it have any? Yes it’s meant to help with the pain. Or does in some cases but will it in mine? And how much so? Enough for it to be worth it if the side effects wear off.

Because if the side effects do wear off and it does significantly help with the period pain then it could be my answer. I would never have to know if I do have endo or not. Which would mean I would never have to know if I can’t have kids until I try. And I would never have to deal with idiotic incompetent doctors trying to get a diagnosis who are more interested in telling you your stressed, or it’s not that bad because you don’t vomit thank actually taking you seriously and carrying out tests to rule things out or find out what is actually been going on with my body these last 8-9 years.

That’s why I’m excited. Because the idea of finding something that works is a wonderful one. The idea of feeling like a somewhat normal human being again is a wonderful one. I couldn’t want anything more. However much I don’t hate having a chronic illness because it’s made me who I am. The option to feel normal again is something I’d take up in a heartbeat. But I’m also scared because what if it doesn’t help or the side effects don’t ease off and I’m back to square one and having to face trips to the medical centre moaning about pelvic pain, abdominal pain, bladder and bowel issues, bloating, nausea (To summarise my symptoms) all over again.

And of course I know it’s not the magic solution to make me feel perfect again but that’s okay. As long as I feel okay enough. And if this does that. That will be wonderful and if not then more anxiety over doctors and tests and future.

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.

Dealing with guilt, feeling over privilaged.

Hello guys.

So lately that nasty little thing called comparison with others has started to creep in again, something major. And it’s creeped in, in many ways. One of those ways is in making me feel like I haven’t done enough with my life in the past. Haven’t been doing enough with my life over the Christmas break from uni.

And I’m not talking about not doing enough with my life in terms of creating new experiences but not doing enough in terms of not having a job and not earning money and never having had a job until 2 months ago. Even with a job now, the hours are so awkward and the location is so awkward in relation to where I live during term time that I struggle to find appropriate shifts that fit in with other commitments and mean I can get back without risking being murdered.

And all of this has lead to be feeling incredibly bad. People my age work crazy hours, somehow balance that with socialising and studying. I’ve worked two shifts in my life. And they were great experiences. One was fun, the other I cried but after that it got better. I just feel like I should be doing more. Yet at the end of the day I know my body can’t take more.

I pushed myself to the limit last term. I ended up getting 3 run of the mill illnesses in a week, the last week of term and so overly exhausted that my energy is only just back to a normal level of fatigue. Not to mention that I am chronically ill and on a bad day I find it nearly impossible to go to lectures and seminars and study from bed. I drag myself in, in comfy clothes and sit at the front near the door in case I need to leave to vomit or I get a bout of diarrhoea or I really urgently need to pee. I am silent and barley engaging my brain in seminars on days I am having a bad day, because I physically cannot. Let alone standing for 4+ hours at work. On a bad day, that is not going to happen. Yet if I had to cancel a shift because of that I would feel so bad, I would feel I had to push through it because that’s what people do. Because that’s what my parents do when they’re sick.

Then there’s the guilt of not having worked since I was 16. Yes I had a paper round until that point so it’s not that I’ve never worked as such… but I do feel like I’m overly privileged. In the sense that I don;t make my own money, but I have student finance and savings and occasionally my parents and other family members may help me out. So I live fairly comfortably without having to try. Without having to make my own living… and I feel bad about that… even though obviously there are reasons why I can’t 100% make a living.

First and foremost it’s that I’m a law student. Being a law student takes a lot of time, a lot of study, a lot of reading. And for any student, balancing a full time job and passing well would likely be near impossible. Secondly I have a chronic illness. I may not be diagnosed but there is something wrong with me. That means I fatigue easily, I have sometimes severe pain, I have nausea, bloating, diarrhoea, frequent and intense urges to urinate. Upon other symptoms. Obviously that limits me to some extent, fortunately not anywhere near as much to others who are chronically ill. And there were reasons why I didn’t work before hand, number one being it did not seem to matter however many jobs I applied for no one wanted me. I barley got any interviews. Secondly I was such a mess back then, mentally and also physically (I would say I was more physically ill then than I am now, in terms of how severe the symptoms were. They just weren’t as frequent.) I wouldn’t have lasted had a got a job. I was an anxious mess and then I was a depressed mess and then I had a flair up and my health really deteriorated and I relapsed into my eating disorder and decided I had to work on myself. At least until the ED related physical ill health was gone. And then exams came around and then no one wanted me for a summer job. So it’s not like I haven’t tried and not like had I not tried that I had no excuse. There were reasons.

But I still feel so bad about it, especially on days like the last few days where I’ve felt fairly healthy. Not totally healthy. But about the healthiest it gets for me right now and I feel like I could do everything, be some sort of superwoman and do it all… and then feel bad for not.

Does anyone else feel the same or has felt the same in the past? Or is it just me? With multiple mental illnesses that have still to be completely overcome along with an  chronic illness, not officially diagnosed, that makes this wonderful thing called life a very complex and confusing journey to say the least.

How Chronic illness changed me

Hello, today I want to make a  post about how my chronic illness (Most likely endo) changed me. Because that’s what it did. It changed me, a lot. In some ways good, and in most ways bad. Anyways let’s get started.

I guess the first change was that I went from being an active child to an inactive one. The year I got sick I played tag rugby and I remember having to sit out of some sessions because I felt so nauseous and I was in too much pain to play. I remember having pain when we played at the Hampshire games, but I had to play through it because I couldn’t let the team down or play on to my family that I was sick. I used to go to scouts and I quit that too. Because my periods gave me diarrhea and my cramps were so bad at that time of the month that the last thing I wanted was to do the runny around activities so my parents said they wouldn’t pay anymore because they thought I didn’t want to go anymore. I couldn’t tell them how ill my periods were making me feel, not my dad because he’s a man and not my mum because all she’d have said was “get over it.” I quit swimming because I couldn’t go once a month and I started finding that painful and made me nauseous throughout the month. It just stopped being a pleasant activity. Come year 9 I had quit horseriding because for years when I was having pain flares it made it worse and again, it just stopped being enjoyable because of that.

I became isolated and withdrawn. And while I was still young (age 11-14)I would moan to friends and go to the medical room a lot of the time. It annoyed people, people thought I was faking and doing it for attention. Even my own dad who found out because a friends parent phoned in concern. And then there were the constant thoughts I was just weak, and honestly,I still have to battle these on occasion. Why could I not deal with periods when everyone else could? I thought it was normal to feel so shitty all the time and I don’t think it helped that I had a couple of friends who shall not be named who were weak and did stay off school when they were on and got their parents to write notes out of PE  when I can guarantee they were in nowhere near as much pain as I was. These were friends who missed PE because they’d had their braces tightened. (Which yes it does hurt but not that much.) And friends who sat out and cried after being hit with a tennis ball. (Which again a pain that really does not warrant that.) I remember not being able to use tampons because getting them in was so painful and my mum said I had to deal with it. And then she said Bethany Hamilton can deal with her periods and so I should too?  (I was obsessed with Bethany Hamilton at the time) And again it made me feel weak. A couple of years later I forced tampons in regardless of the issues I had with them because I felt gross without them and thought other women would somehow judge me for still using pads at 15.

And obviously, this all had a huge impact on my mental health. Going from an active child to a teenager who can barely manage to focus during school and do homework does that. All I did was sit on my laptop and immerse myself in TV shows and that was my life. I became depressed because I could no longer do the things I loved and I was so confused as to why I was feeling the way I did. I became depressed because I confused over what was wrong yet feeling like I was just weak at the same time. I was going google crazy even at the age of 11 and nothing seemed to fit, not until I came across endo and even then sometimes I still find myself believing I’m weak because I don’t have an official diagnosis and I’ve never passed out because of the pain and only actually vomited once. (Only vomited once in the last 9 years mind you.) And quite frankly I was scared. Scared it was something serious yet not being able to summon up the words to say I need help.

This in turn lead to me becoming anorexic. (Well along with the random weight loss between year 9 and 10 of school) I was already restricting on and off from the age of 13 but I would say it was more disordered eating that eating disorer at the time. And yes the anorexia removed my pain for  a time  and it made my periods a lot lighter but that doesn’t make Anorexia a good thing. Anorexia made my relationship with my mum deteriorate even further, a relationship which still hasn’t been able to be fixed and probably never will.

Looking back you’d think I could go back in time and change it all. And yes there are things I had wished I’d done differently. I wish I’d opened up to my parents more. Seen doctors. Got tests. Answers. Gone to A&E on the occasions I thought I might have appendicitis. But I certainly do not wish this never happened to me in the first place. I feel like going through everything has made me one strong ass bitch. Someone who is able to continue on her life despite excruciating pain. Someone who has pushed through for the last 2 months because it’s either that or lay in bed and let myself become depressed again.Someone who is grateful for when she feels well.

It’s made me a better person. Someone who’s more understanding of people who can’t work. People who do experience chronic illnesses and people who suffer from mental illnesses. An understanding I am sure I would not have gained otherwise just due to my parents and certain other family members influences.

So I guess despite all the bad things I would say I’m grateful for everything I’ve been through because it’s made me a better person. Although I do hope my last couple of months pain and all other symptoms have just been flares and not a sign that it’s got worse or cancer because I’m going to uni in a week and I need a job because my parents will belittle me until I get one and not support me financially even if the reason I can’t manage work is due to actual physical pain.

I guess the one reason I wish I had a formal diagnosis and had seen doctors in the past is so that people may be more understanding of me.

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.