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.

The reality of Anxiety

I feel like not many people understand anxiety. The havoc it can wreck on someones life. How it leave someone feeling trapped. With no way out. No way to grow or succeed.

People also believe that when people with anxiety have panic attacks it’s obvious and shows physical signs. But not all people with anxiety do that. Some just go into themselves even more and panic internally. Panic attacks are not always obvious to the naked eye. So when someone opens up to you about something making them anxious please don’t underestimate this or not believe them just because they’re not showing stereotypical outward signs.

People can also get anxious about a variety of different things. So don’t judge if what makes them anxious seems mundane or even irrational to you. A lot of us with anxiety know we’re being irrational, but that part within us that is anxious is stronger than that.

My anxiety effects me so that I struggle to call people or even answer the phone. This has got a lot better over the years but still really effects me. Especially if it is to do with solving a problem. Problems involving phone confrontation keep on cropping up in my life as well. I recently allowed myself to lose over £1000 that I should have been paid because I was too anxious to phone or even email and deal with the stress of sorting it out. My doctors lost my new phone number and I was too anxious to phone and sort it out.

Both of these situations have huge consequences for me, my financial security and my mental and physical health.

My anxiety also effects me in other ways. Like not being able to stay in contact with friends, because I’m scared I annoy them. Not even being able to apply for jobs/scholarships because they need a reference.

Wimping out of going to interviews at the last minute. Not sending formative assessments to be marked. Having to get to places ridiculously early incase your late. The list of ways my anxiety has effected me could go on.

Anxiety is real and it is debilitating, this is something that everyone needs to understand. It is something to be taken seriously and not just brushed aside. If you have a loved one with anxiety you need to help support them through it. Help them manage and overcome it so they can live a more fulfilling life.

We need support,and sometimes we need others to do things for us because we’re unable ourselves.

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!

Binging again?

Guess who’s back, back again.

Me of course. I always come back in the end.

Anyway today I want to write about binging, and more specifically the fact that I am binging again and what it is like to relapse into behaviours after recovery.

So over the summer I had a chronic illness flare up and lost weight. To below my set point and so of course my body is reacting. Leading to be now reactive eating/binging. Whatever you want to call it it is not pleasent and it does mess with my mood and make me even more bloated than usual. Which yes is possible. I’ve tried not having junk food around and turns out I then move towards binging on healthy food which makes me feel horrendously sicky the next day. Not ideal. And of course it’s cheaper to binge on bourbons than it is on Dates, Nakd bars and PB.

Binging was never a main eating disorder behaviour of mine. I did binge. When I was gaining weight in recovery an when I was really overexercisisng. But it’s never something I’ve turned to for emotional reasons or boredam. Or atleast I don’t think so. And that aspect of it I think is even worse and makes this whole fiasco more confusing. I’m engaging in an unhealthy behaviour, I have no control over myself with regards to food in the evenings and I have no idea why. There’s no reason for me to do it so why do I do it?

That’s the question that plays in my head every night after I’ve binged. Why? My life is better than it’s ever been. I have friends, I have drama, I have inapendence. The only hang ups I have with life right now are the fact that I’m doing a degree I don’t love and the need for a job or volenteering or something but being so anxious that these things are prevented in a variety of ways.

I have no reason to binge so why? And why can’t I stop myself or control myself? Sometimes it’s like there’s a devil on y shoulder egging me on. Telling me to carry on. Most of the time there’s nothing, no conflic between the rational me and that devil on my shoulder. I just do it because I’m fixated on food and I can’t control myself. I can’t help myself. I need to do something, but I don’t know what. I need to stop it because it’s a problem. It doesn’t make me feel good. Mentally or physically in so many ways.

The question is what? I am in a situation I have never really had to deal with to a large extent before and I’m stuck and desperate to change this.

 

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.