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.

I stopped exercising for 3 weeks and…

Hello beautiful angels who read my blog post. So the title gives this one away a little. My writings today will be about me stopping exercise for 3 weeks and the effects of that.

Now. Nothing drastic happened. I don’t think I’ve gained any weight and if I have my clothes still fit so who cares really. Basically I haven’t ballooned into some obese monstrosity, so if any of you feel you need a break from exercise for one reason or another please take it. It won’t kill you.

But onto the more negative stuff.

I ached A LOT! From head to toe all the time. As someone with a chronic illness I’m used to pain. I’m used to things hurting and as someone who has been stupid and overexercised in the past I’m used to the little niggling recurring injuries. But this was different. I feel like my body may have been punishing me for physically not having the time or spoons to exercise. Everything was also a lot tighter than usual. And I’m not saying I’m a flexible person. I’m far from it. But everything was noticeably tight.

Then I started exercising again because I had nothing else to do, so it was worth the spoons it takes and things started aching a lot less and feeling a lot less tight.

So I guess the point is that it’s always important to make time and spoons for exercise. i.e prioritising it over other things. I’m not talking about anything crazy intense here or anything that has to take up more than 10 minutes of your commitment 3-4 times a week. But apparently exercise really does help keep us as healthy as possible.

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.

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.