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.

Advertisements

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.

To people who have never experienced the hardship of mental/chronic illnesses…

Please be kind, we are incredibly fragile people. We break easily. Both literally and metaphorically speaking. We need treating with care. Please remember this before you say anything judgemental.

Please don’t say any of the below list:

  • Why don’t you just try? – We are trying. So much more than you can see. Unfortunately, us spoonies have to try so hard just to appear as a normal functioning human being, so on some occasions our work may appear to be lacking.
  • But quitting’s a bit stupid/There’s no point in just giving up – No it’s not and yes there is a point. We need to prioritise our health in whatever way possible. This  may mean quitting a job  because it’s harming our mental health so much. Or taking a year out of college because we’re too physically ill to cope with the demands.
  • It’s not that hard really – Maybe not to you but for us it is. Remember we are different people, have different experiences and handle things differently. Yes you may find it easy to lead a group or socialise but for others of us leading a large group puts us on the brink of a mental breakdown and you’re not helping this with the constant criticism
  • Maybe it’s not the job it’s you – Thanks, just more reassurance that I’m a useless piece of crap that deserves no place in this world. Thanks.
  • Any judgement on why we don’t work etc. – Again, not helpful. Maybe put yourself in my shoes for once. Try spending 9 years of your life terrified your dying of a serious illness with no one to confide in, only to find what you likely have is lifelong, life damaging and can only be diagnosed through surgery. Having depression and anxiety with minimal support. Try self recovering from anorexia. Then see how much time you can allocate to a job on top of your study demands.
  • Just get on with it – Really? I am in severe pain, have a whole host of other symptoms and a lot of mental crap going on in my head on a regular basis and you’re telling me to just get on with it? I’m doing the best I can, and that’s all that should ever matter.
  • Why don’t you… “Go vegan” “Try Yoga” “take x,y,z” “get out more.” etc. I’m sure we’ve all heard all of this before. However kind of a place in you’re heart that these suggestions come from they really don’t help. Trust me a lot of us have tried it all so we don’t need your stereotypical suggestions. Unfortunately for a lot of us these suggestions will never fix us and only ever provide minimal relief.
  • Are you okay? – I guess it depends on how you say it and who you are with this one  because sometimes it can be a blessing, but with some people this just really bugs me. Like of course I’m not okay but I’m not going to open up to you when I either barley know you or you speak in that condescending way. On top of that it’s been so long now that I have a standardised yes response to most people, even when I’m in severe pain and it feels like the whole world is crashing down.
  • You’re a burden – Or anything that could have that effect. A burden is the last thing that we want to be. Don’t tell us this, please. It hurts so much.
  • You’re just doing it for attention – No we are not. This is real. Telling us we’re doing this for attention isn’t at all helpful it makes us doubt ourselves even more than we probably already do.
  • You need a hobby – You know what I agree, a proper hobby would be nice. A sport maybe. But the reality is for some of us, working full time or studying full time can take so much away from us that things we once enjoyed are slowly taken away and slowly become less and less frequent things to enjoy. There’s a long list of things I did but have ended up now not doing regularly because it either hurt too much or was too exhausting to carry out after the days commitments have been completed.

I’m sure there are a million more things that people shouldn’t say but will keep it to this for now. Just please even if you can’t empathise at all try and be a little more understanding of peoples individual circumstances. You never know the full story so try not to pass such judgement on their character or work ethic.

Between Law and Theatre

So it must have been November time when i came up with the clever idea to change degrees, change the course of my life. And embark on the journey of considering, thinking and eventually applying for and getting an offer to study Theatre at the university I currently attend and study Law at. Now this was a long process, with a lot of careful thought and consideration before I made the application. It took me 5 months to finally get my act together and decide to make the application. Deciding that I would regret not taking the opportunity to study what I love. What I have a genuine interest in. So I did and within 24 hours I was invited to a selection day, which happened around a month and a half later.

During this month and a half I went through all the motions. Starting with my friend, or “friend” as she should be more aptly termed as to be in line with the current state of affairs. Anyway it started with her basically saying I couldn’t act, but in that nicey nice civil politically correct way which I oh so hate. That oh you have potential. In that awful tone of voice that says it all. You don’t have potential. Your rubbish. And then she said it all, dropping the nicey niceyness and saying I’m offputting on stage. Now if that didn’t hit my already incredibly low confidence hard. That statement I can never get out of my head. I’m off putting on stage. No not the statement the word. Offputting. This is why I have no friends, this is why I can’t get a job, this is why my family are the way they are towards me. This is why I can’t act. Why I never got the main role and was always shoved in the background, given some pathetically minor role that says “well done for trying, but you really don’t cut it, but obviously to be politically correct we have to give you a role, we can’t just leave you, this one person in the class, the year group, the extra curricular club out.” And then she went on to say she thinks I’m making a mistake. Great way to support a friend right? Telling her she’s making a mistake. Another thing I can’t get out of my head. What if I am making a mistake? What if this is all wrong and despite months of consideration this is a stupid path to embark upon. 

I got a C in GCSE Drama for god sake, off course I’m not equipped to study Theatre.

And second there’s the way people look at me when they find out I might be switching. Trying to be excited for me, pretending even. But not doing a very good job of it. You’re always able to see through it. See that they also think your making a mistake. Because lets face it. You’re the last person to succeed on a theatre degree, to fit in even. Your not confident, you don’t party, you can be highly introverted. Not to mention your A levels involved nothing even remotely creative. Oh and your off putting on stage. Which just adds to the idea that your making a mistake to anyone who’s ever seen you on stage. Because lets face it. Why would any one want to see me on stage? Why would anyone see me as a theatre student.

And thirdly and finally, there’s my parents. Who try to be supportive but you can tell they want me to stick with law. Which I 100% whole hardheartedly understand. What with Law seeming like a more practical degree in terms of future career options and the extra debt coming from the 4th year at university. And what if I hate it and want to drop out after first year and that’s just more debt with no gain in terms of career prospects at-least.

I guess all of this just exacerbates the fears I had and thought I’d reconciled with and justified before taking the plunge. The fears I’d not overcome but decided that they were fears that shouldn’t stop me. And now it’s all come back. And my guts telling me to do law but the thought of declining that offer. It makes me even more depressed than I have been feeling at times lately. It just feels like I’m sending myself into an Abyss of darkness and cluelessness. An Abyss of studying something I’m not passionate about with no end goal. No plan in life.

By declining that offer I feel I would be plunging myself into an abyss with no way out.

But I’m so terrified of theatre, even though it’s what I want. What I enjoy. What I have a genuine interest in. And the selection day, despite initial nerves ended up feeling so natural. A stark contrast to my law applicant day last year where I felt so out of my depth.

And at the end of the day right now, nothing seems like the right option. Nothing seems like my path in life, my destiny. Or even. This will make me happy. I think theatre will make me happy but will it? What if I can’t manage balancing the academic and practical requirements.What everyone in my year hates me? What if I fail? Or don’t get that 2:1 I oh so desperately want whatever degree I conclude. At the end of the day Law is the safe option. But it’s not what I want in life. But it’s an excuse to hide in the library rather than coming home to a house of so called friends. It’s the same to what I’ve been doing all these years. Revise for the exam, pass the exam. It’s just not what my heart is telling me…

So here I am. In a state of confusion. Unsure about what’s wrong or right. Unsure about my path in life. In a position in which a decision needs to be made but feeling paralysed as to my abilities in making that decision.

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.

Uni Anxiety Already?

Hello everyone, today I just need to get things out. And rather than talk them through because lets face it. I have no one to talk to. I’m going to write the through in the hope that someone may help reassure and calm me about what the rest of my life or the next 4 years atleast has to hold.

I’m supposedly going to uni in september. To study law. Either in east london or north london. Yes the big scary city. It is not so much the big city that is daunting me though. I love london.

It’s the indapendance. And the having to live with other people. Having to manage money.

First things first I have a phobia of vomiting. So what if I don’t get allocated an ensuite. I will be 100% a mess otherwise. And what if someone else gets sick? Even if I do have an ensuite I don’t know if I will beable to cope with that because what if I catch it? And I am so scared of vomiting… So so so scared…

And what if everyone hates me. My mum has sad it any times before. “Everyone will hate you at uni.” I’m so scared of being alone, I already am alone but I’m scared of being more alone than  already am and I don’t know if  will be able to handle being around other people all the time. People scare me. Especially people my own age because some of them are so horrible. I’ve never really fit in anywhere. What if I don’t fit in at university?

And then theres this money issue which effects my whole life. I’m scred of spending money to do things I want… I’m scared of spending money on anything other than food or to replace things that are broken. And thats actually going to prevent me from being able to make friends at university. I’m also scared I won’t be able to get a job, baring in mind i seem to be completely unemployable given the jobs I’ve applied for in the last year… What if I don’t have enough money? And my mparents won’t help because “I need to get a job.” I can’t help that no where wants to employ me. I can’t help that I may be too crippled with anxiety to even consider gettng a Job…

Anyway. I think that explains it all…

Honestly. I’m considering moving to thailand and just figuring this mess of life out from there. But ob course with my vomiting phobia which also extends to diarrhea the water issue and long flight also causes issues.