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.

Facing reality

So vegans who think everyone can be vegan please leave now. And yes for the record I am still vegan. But I have been questioning that a lot over the last 24 hours. Not that I shouldn’t still be vegan and not that ethically my views have changed. But that if it came to me having to eat meat. Would I? Answer is yes. If I had to. It would be incredibly hard… and painful and I’d hate it and hate myself but if I really had to I would. Because if it comes to it. Me and my health is far more important than that of any animals. I can’t go round helping the animals if I myself am not well.

I guess people are questioning why only now I am questioning this. When veganism is quite solidly embedded into my diet atleast. That’s because I have recently been diagnosed with Iron deficiency. Possibly Anemia? (Yay for two different voicemails from the receptionists at the doctors leading to slight confusion.)

But the point is I am a deficient vegan. Which honestly I never thought would happen to me. Well maybe with Calcium… but even pre vegan me never consumed enough of that. But never with Iron. I’m careful to get enough Iron in my diet. I eat dark leafy greens, Beans, pumpkin seeds, fortified foods etc and these are mostly paired with some form of vitamin C to help absorption. Feel like I deserve a god star right now. Yet I still ended up Iron deficient. So obviously I’m now taking supplements before exploring the eating a steak road. But the question is what if the supplements don’t help my levels rise (and yes I am drinking orange juice with them, so they better) What if I have some sort or non-heom iron absorption issue?

Lets hope I don’t. And this is more to do with the digestive issues I had up until a couple of months ago which got as bad as frequent bouts of bloody diarrhoea before my digestion spontaneously healed and this is all one big consequence of that. Or it could have something to do with the possible endometriosis. Or both.

But if it came to it and whenever I make the executive decision to go back down to the medical centre and ask for a re test (Think I live there right now…) everything will be up and I won’t even need to think about the meat issue. Because honestly meat is so ethically wrong to me. It’s a decision I would take very heavily.

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.

Insomnia, sleep, sleep as a spoonie

Sleep issues are something I’ve suffered with for years. More predominantly since I was around college age and stress got to me which added an extra layer to my sleep issues. When before it was just chronic pain and nausea affecting me.

I know sleep issues are something many adults suffer with, many adults moan about. Say “they haven’t been sleeping.” or “There’s not enough time.” or “They couldn’t get to sleep.” It is somewhat an epidemic. Quite possibly due to modern society. Modern technology and the expectation in some career paths to be 100% totally dedicated to your work and nothing else.

But sleep is essential for everything. And something that should be prioritised whenever possible. It can be frustrating when we can’t get to sleep and only have a maximum number of hours we could possibly get anyway. Especially for us spoonie’s who often suffer from fatigue regardless of getting enough sleep, yet also have the issue of not being able to sleep due to symptoms of our illnesses. It’s quite a difficult situation to be in.

I’m someone who has tried everything and found that although it doesn’t always work a must for me is to have some sort of sleep music or hypnosis to send me off. If not the slightest noise will disrupt and disturb me. And there can be a lot of noise at uni residences.

I’ve also found atleast a basic routine helps, trying to go to sleep not too early or not too late and if I end up being up a lot with a pain flair trying to get my sleep pattern back as soon as possible in order to catch up again is most sensible to reduce the effects of sleep deprivation which generally make me feel like I’ve been hit by a truck, or with some awful flu. Even if it’s 5-6 hours rather than 7-9.

I guess most non spoonies wouldn’t understand that. They may feel 5-6 hours is acceptable sleep, although not enough for optimal human health they can manage on that. Yet us spoonies have out bodies fighting against us anyway and often struggle to one extend or another with energy, especially if we try to live busy normal lives despite out illness so we need a minimum of enough sleep to manage well.

“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.