I struggle to socialise because of my chronic illness?

Hello, It’s me, blogging again. Today I am blogging about socialising and how I struggle with it and making friends mostly due to my chronic illness and in part related to my mental illnesses.

So I have been chronically ill since I was 11. Which in short made me feel ill a lot of the time and made my friends back then get fed up because of me feeling ill all the time. I’m not going to go into all the details in this post as you can read about that in one of my previous blog posts.

This has lead to me A) Not knowing how to socialise and B) Struggling to make friends.

Lets address A first. The not knowing how to socialise. Being chronically ill for 8 years has meant I don’t know what to talk about in social situations. I genuinly have no idea how to start a conversation. I can normally manage to contribute when a conversation has been started to some extent but I do really struggle with not knowing what to say because I essentially missed out a lot with regards to social experiences from having friends who got sick of me being sick. And also because when something consumes your life for so long sometimes it is all you can think to talk about. I did notice that when I was recovering from anorexia the first time.

And then theres B the struggling to make friends as again it can be hard to figure out what to say to new people and also because it can be hard for people to get to know you when you’ve been chronically ill for 8 years. Purley because there is not much to know about you. Everyone else seems to have been on amazing adventures up until this point in life and I havn’t. I’ve binged watched criminal minds, grey’s anatomy, scandal, higher ground, brothers and sisters, alley mcbeal and various other shows. I’ve studied. But for the most part that really is it. Because I was too ill to want to do anything else a lot of the time. Hobbies I found enjoyable before stopped being enjoyable because they hurt me.

And then theres the issue that combines both of these. The way in which the chronic illness impacts on you day to day. Yesterday my friend thought I was getting bored of her or something and in reality I was in some moderate pain and I just didn’t want to stand up. But I couldn’t explain that to her. How would that work: “No I’m not bored of you but I’m starting to get period like cramps when I’m not on my period because my body a mess.” And then theres the fact that sometimes you just don’t want to hang out or you do want to go home early because of the pain. Or the fact that you can’t commit incase your having a bad day. It just causes so many problems.  The reality is I don’t feel comfortable telling them I am chronically ill right now for a number of reasons. One being because my symptoms arn’t that bad, not as bad as they were in terms of pain severity and not as bad as so many others experience. The second being the fact that I’m not officially diagnosed with anything and I think they’d thing I’m making it up for attention or being stupid because I have yet to see someone about my symptoms. I guess that’s one of the many ways in which my anxiety interefers with me. The third and final reason is because I’m scared I’ll lose them or they won’t want to live with me next year because of it… and I’d be back to square one of being a hermit again.

So yes that is that. I guess it is just something I will have to learn to navigate.

“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.

Endometriosis?

Today is one of my talking about something different blog posts. In all honesty, as I recover more from my eating disorder I don’t feel like talking or writing about it so much. The muse is just not there anymore. So today I am going to talk about endometriosis, which is a condition which I think I have but me being me is too scared to go to the doctor just to not be taken seriously.

What is endometriosis?

Endometriosis is a common condition where tissue that behaves like the lining of the womb (the endometrium) is found outside the womb.

These pieces of tissue can be found in many different areas of the body, including:

  • the ovaries and fallopian tubes
  • outside the womb
  • the lining of the inside of the abdomen
  • the bowel or bladder

http://www.nhs.uk/Conditions/Endometriosis/Pages/Introduction.aspx

Why do I think I have this condition?

Now before you expect some story about the number of ER (Or A&E in the UK here trips I’ve had or how much school I’ve missed. You’re not going to get that. Because I’ve ever missed school as if I was to tell my mum I had period pain, albeit really quite severe pain she would tell me to get a grip or harden up. And as for no A&E visits (Come on I’m not American guys I have to say it properly) There have been many occasions where I probably should have gone to A&E because of said pain but I didn’t want to be a burden on my parents so I always hid it from them as best as I could. Anyway, without further delay lets get started with the story.

I got my first period the day after my 11th birthday, December 4th 2008. I remember waking up and thinking I was sick because I was in pain, I thought I probably had some sort of stomach bug or something until I got out of bed and realised what it was. But I couldn’t stay off school because this was the day before the Christmas fair and I was playing a lead role in a segment of Nicholas Nickleby. I had to be present because as us actors say. The show must go on. (not that I would call myself an actor but that’s beside the point.) Anyway, I remember feeling really ill all day and in really quite a bit of pain. More than a stomach bug would bring and it was lower down than what a stomach bug would bring. In my experience anyway. I remember fighting through classes and rehearsals. I actually forgot to take my spoon on stage once because I was in so much pain presumably, seeing as I’ve never forgotten props before or after that occasion.

That was my first period and also around the point I started feeling sick all the time. Okay in reality not all the time, but it probably seemed like it from the teachers perspective with the amount I went to the medical room. This is also when I started getting pelvic pain right where you would if you had appendicitis and I was genuinely paranoid I had appendicitis until I’d researched it and realised I couldn’t have because this pain was an on and off pain that would last for maybe a week at a time? Or at least in those days.

My periods were light when they started, as they are now but even then, looking back I still remember pre-period nausea, diarrhoea I would get on the first 2-3 days, and the pain. All things I have continued to experience frequently up to this day.

With secondary school starting I learnt not to moan as much about feeling ill or being in pain, more so I was too anxious to tell teachers I wasn’t feeling well because I didn’t get on with my form at all. My friends did, however, know about this constant feeling sick, as they called it and I am well aware this is something that annoyed them greatly. Anyway, year 7 brought about the first time I really did think I had appendicitis. It was a day we had PE I remember because I asked to sit out as I was in so much pain and I felt so ill, but I wasn’t aloud as the teacher didn’t believe me. Back then I wasn’t a teacher’s pet but year 9 onwards I could basically sit out of PE whenever it suited me. A power I didn’t abuse because I loved PE but used when I absolutely could not handle standing, running, or sporting in any way due to this mysterious, as it was back then pain. I was actually really struggling to stand, let alone run so obviously I was “slacking.” As it probably appeared to everyone else. I remember next period we had textiles and the pain had intensified since PE. I was actually contemplating telling the teacher but this time, it was more the anxiety of possibly having to go to the hospital because of where the pain was that stopped me. Obviously, I eventually got better at some point after this moment, or at least marginally to not be in as much pain as I was on that occasion.

It was year 8 that my periods got heavy, and by heavy. I mean having to change my pad between periods, so every hour. They also became much more painful, I actually started sneaking painkillers from the cupboard in the kitchen, painkillers actually helped back then, or at least somewhat. That year there were two occasions where I thought I had appendicitis. (Common theme for me here) One towards the end of February and another in august. The time in February was the worst. I was in the most pain I’ve ever been in in my life and today I still agree with that statement. I have never been in more pain than I was that night, but guess who still didn’t go to A&E because they didn’t want to be a burden on their parents. Me of course. This was definitely in the middle of my cycle because year 8 was when I started to notice a pattern between when my various pains and nausea would act up. The one in August my friend actually thought I had appendicitis, a friend of ours had just had it. And she tried to drag me to the doctor, however, me being me refused.

By year 9 I would get period pain in my back and abdomen, I was popping the pills every 3 hours rather than every 4 when it was that time of the month and even then I didn’t get much relief. By year 9 I would feel ill for 3 weeks of every month and still had heavy and long, 8-9 day periods. It was in year 9 that my aunt was diagnosed with breast  cancer and I started to talk to her more, and I finally felt like I wasn’t so alone with my pain as she also experienced bad period pain and thinks she has endometriosis. It was year 9 that I went on the ski trip. February half term, I very, unfortunately, got my period a week early and I was actually in so much pelvic pain for a good half of this week that were occasions, when we were not skiing that I physically couldn’t stand. I also had no appetite the whole week and lost so much weight that my ski clothes, especially underlayers were too big  come the end of the week.

I guess this  leads us to the time when I  came across endometriosis and remember thinking I had it however at the same time having the feeling that I was over exaggerating and complaining about nothing.  I was actually watching Higher Ground and in that one of the characters has endometriosis. I was curious so I googled it and suddenly everything I had been experiencing made sense. I’m pretty sure I actually self-diagnosed with endometriosis for a while. But now I don’t say I have it I just say it’s a possibility because although I believe in self-diagnosis for SOME mental conditions. It just cannot be done with physical conditions.

Anyway. Year 10 came and by that point, I had, for the most part, given up on painkillers because they did nothing and just decided I would have to deal with the pain in whatever way I could. I did, fortunately, get some relief towards the end of year 10. For all of you who follow my blog you know I’m recovering from Anorexia and the end of year 10 is when I stopped getting periods due to this. Oh how my friends envied  me for those 6 months that I had no periods for.

So I got my period back in recovery from  anorexia and suddenly they were a lot lighter and since have remained that way. Apart from back when I was drinking a lot of soy milk strangely enough. I was still, however, getting 8-9 day periods. The other difference was for the first few periods they were nowhere near as painful. A More normal sort of painful if you get me.

But the relief could not last forever, and the pain came back with a vengeance. The only difference being not feeling so ill for so long every month. It settled down to 2 weeks a month. Just normal PMS really, or as I thought then. And that’s the way it was really until I relapsed into Anorexia, had periods if you could call them that, they were so light and short with no pain and then I recovered again, on a healthier diet than the one I was on before and I certainly had a lot less pain, I would say a bit more than normal pain on occasions but nothing like I’d experienced prior. Well, that was until the last month of fun I’ve had. And this month I made a link again between pain and my cycle.

Anyway, that’s that story done for now. I guess one day I may get the courage to see a doctor and gain answers. But on the other hand, I may not.

 

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.

 

 

Understanding Emetophobia

Today I’m making a blog post about something slightly different than usual but something I have experience with and something which only recently I have not felt so alone with.

Emetophobia is a fear of vomiting which in some cases can be debilitating and always intervines with “normal life.”

I don’t know how long I’ve had emetophobia for, I think since the age of 10-11. Thats around when my earliest memories are, and by my earliest memories I ean my parents telling me I’m a horrible person because when someone in the family gets a stomach virus i turn into exactly that. A horrible person. I struggle to be in the house, I usually hide away at my nans. I’m scared to go to the bathroom, I actually have to hold my breath while I pee incase somehow I get sick from the sick person that was in the bathroom just from breathing in there. When soeone in my family is sick I tell them I want to kill them and that I hate them. I don’t go into the same room as them. I won’t touch any food that has been in said room because what if it’s been into contact.  still struggle to eat atall when someone else is sick although since being n recovery from anorexia I have been able to rationalise that a lot more.

I can only go out to eat somewhere or get a takeout if the food hygeine ratng is 4-5. The reason I didn’t go to my friends party last year was mainly because of that. The food hygeine of the place was 2 and I’d read reviews on trip advisor about rats and food poisoning and even though some of them we’re fairly old I couldn’t bring myself to go because what if I to got sick. Especially at a sleepover when  didn’t know two of the people. As someone with social anxiety aswell every part of me was saying no. Yet at the same time I felt incredible guilt.

I used to not be able eat rice because of something my food tech teacher said about how it could give you food poisoning. I would never order chicken in a restaurent because thats just asking for trouble. I could never eat anything past t’s best before date, even if n reality it was perfectly fine. And even now I still get anxious if I do happen to eat something past it’s best before date.

I remember when there was the norovirus outbreak on cruise ships in 2012/2013 and it terrified me because we were going on a mini criuse that may. This also happened to be around the time my eating disorder turned into anorexia and i reember no wanting to go for on this before because I’d get sick. I spent the whole wee
kend being scared I’d get sick or get fat.

I worry about the future because of this disorder

. I worry about getting cancer because chemo, I’m never going to get prgenant because morning sickness and what if the kid gets sick? I don’t drink because what if I’m sick?

I’ve never had any support foc95ecdb096dab3c49222efffed8c0e76r this disorder. Only misunderstanding and hate. y own parents tell me “I need to be locked up” and that ” need to stop being so horrible.” They tell me “I won’t beable to cope at uni.” So much that going to uni and living in halls terrifies me so much it actually puts me off of going because people will get sick and what if I don’t get allocated to an ensuite room and I have to share toilets? No one understands that I have a disorder, instead they just think I’m being silly. Or lazy or diffcult. Or just plain horrible. As my family does with all of my mental illnesses.