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.

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.

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.

That Little Thing Called Denial

Hello and welcome, readers of my blog.

Today I’m writing about that thing called denial. And how that thing called denial has come back into my life. With a vengence, if I may suggest. Just because I’ve learnt to control some of my symptoms and minimise them. As if the fact that the nausea,  diarrhoea and bloating have lessened somehow means I’m not chronically ill at all. Because the pain isn’t as constant as last month. There’s nothing wrong.

And of course that’s ridiculous. I know it is. Its not normal to be in the amount of pain I find myself in on an all too frequent basis. It’s not normal to not be able to eat before 9:30am at the earliest without risking feeling horrifically nauseous or possible diarrhoea. It’s not normal to bloat like I do. And urinating should not be painful atall, especially not to the extent it was this morning. Neither should having a bowel movement cause pain. Even down to being as fatigued as I am, and having the irregular periods I still have, despite having menstruated for over 8 years now.

So why so I do it? Why do I find myself denying that there is something wrong with me. Maybe it has something to do with how this has been my life for over 8 years now. To me this is normal. And yes certain things may or may not have got worse in that time, but I’ve got used to pain. I’ve got used to nausea, fatigue, bloating. The works. So for me that is normal. Which leads me to feel like I am now just moaning about nothing…

Or maybe because the condition I think I most probably have is endometriosis and maybe the fact that initially symptoms only presented themselves at a certain time of the month makes me again feel this is normal. This is just womans troubles which I cannot deal with… especially considering I’ve always had friends who have had cramps and nausea.

An alternate reason because there are a lot of people with chronic illness who are a lot more ill than me, and my brain seems to focus on that, rather than all the people who may have chronic illnesses and not be as ill as me.

Or maybe it’s a combination. And my brain. Being the mess it is seems to focus on why I may not be ill than all the many reasons as to why I certainly am ill and why I certainly need to fix it.

It’s one of those things I’ve got a lot better at ignoring and recognising when I’m doing it but it’s still hard not to feel that way atall.

 

 

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.

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.