The Difference between being Well and Chronically sick.

One of the biggest problems us Chronically ill face is the lack of understanding from those who don’t suffer the same afflictions. Which, I get it. You can’t understand something like this. Something that you’ve never been experienced before and sounds so alien from your healthy person life.

I feel one of the best ways to describe it is through Christine Miserandino’s Spoon theory. Unlike the average human being us chronically ill have a limited number of energy reserves or symptom tolerance in a day. And yes technically we can go over those in a day, but if we were to do that then it would leave us with less spoons for the next day or more. Until we were to just completely stop.

Image result for spoons

Now imagine each daily activity takes away a certain number of these spoons. Even the most simplest of them.

Lets start with getting out of bed. Yes even that takes spoons from us. Now lets think of taking a shower, that can also take a lot of spoons from the Chronically sick. Even more if we were to wash our hair, or shave at the same time.

Now you’ve got the gist of things you can see that even after completing tasks that are mindless or even refreshing to the average person we end up severely compromised.

When you have a chronic illness you are constantly fighting. Constantly pushing through relentless pain and fatigue. Not to mention the whole host of other symptoms that we can sometimes face with a chronic illness.

Yet most of us look perfectly healthy and able on the outside but please understand that this is not the case. Our body is fighting a war on the inside which is invisible to everyone looking from the outside.

This is why we may not want to socialise. It’s not even that we don’t want to. Mentally we probably do. Mentally we are probably bored of feeling physically capable of nothing. But physically we can’t do it and if we do it will just continue and heighten our daily suffering.

And we don’t want that. We don’t want to end up back at our worst for weeks or even months on end when we can prevent it. Most things in life are not worth that. Not atall. Related image

So please try to gain a little understanding before you judge us or frown upon out attitudes or work ethic. If we say no. Please don’t take it personally. It’s not you. It’s that our bodies are fighting a war that you could never understand.

We just don’t have the same unlimited number of spoons that the average healthy person has. We have a limited number.

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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.

Living in a World of Fear and Confusion

I guess the title of this blog sums up what it’s like to have an undiagnosed illness, especially one that is chronic in nature. One whereby one day you get sick and  then you never get better. Bonus points for having an illness that hits when your young and lost and there are many other things also going in in your life and bam. It’s a recipe for depression to be totally honest.

I had very much managed to put the fact that I was ill to the back of my mind for a while, it was very much just  “I’m hurting because I’m about to get my period.” or “I’m nauseous because I’m about to get my period.” However much when my symptoms first started I knew something was wrong I guess I had managed to kid myself that nothing was and I was able to be happy and not live in the world of fear and confusion. The world that I spent a good few years of my life in.

And even now when part of me very well knows something is wrong I can be happy despite the fear, and the confusion. I can be happy by being busy, by being distracted. My hanging out with friends and family. Or just my appreciating the little and simple things in life, such as the sun setting or the weather.

That fear and confusion does still get to me though. It gets to me when my mind isn’t occupied or when the pain cannot be ignored even with use of pain meds. On the nights I lie awake in pain, or the days of never ending nausea or seemingly permanent bloat. When my friends start talking about when they want to have kids and how many and names and you realise you might not even be capable.  When other people online moan about their pain and it seems way worse than yours and you end up comparing yourself. Questioning whether how you feel is just normal and your just weak. Because you can’t possibly have endometrosis, PCOS or any other condition because the pain isn’t that bad. The nausea isn’t that bad. The bloating isn’t that bad. And overidingly because you do have good days, Days where you actually feel like an energetic, healthy, functioning member of society.

Lots of concerns and lots of questions come into my mind on these times. When I was younger it was a lot of “What if I’m dying?” “What if I have cancer?” What the hell is wrong with me?” Now it’s a lot of “What if I can’t have a kid?” “What if there is nothing wrong with me?” What if it turns out that I’m just weak?” “Why can I not just deal with this already?” “What if it impacts my career aspirations, my chances of being a well functioning member of society?” “What if I end up on benefits and looked down upon?” “What if everyone hate me because I moan and I’m ill and that’s all there is to me?”

It’s that sort of thing that really gets me down. The fear that there is nothing wrong, that everyone will hate me, that I won’t be successful in life, that I won’t have kids. Along with the confusion over what is wrong. Is there anything atall. And yes I have been to a doctor since I last wrote about being chronically ill. But I had no medical tests. I was prescribed pain meds ever so slightly stronger than ibuprofen and told to see how that goes.

Fact of the matter is that they barley work. And seeing as I’m going to have to pay for my next prescription there’s no point taking it. They are not worth £8.40 or however much a prescription costs these days.

And then there’s the knowing that I need to go back once term starts again but the fear kicks in again. Students can’t book appointments so there’s the going down to walk in having to possibly see a different doctor, explain the scenario again. And then there’s the fact that this doctor may not believe it’s endo. At least the one I initially saw did. And preceded to look at me as if I had cancer. And they may just say it’s IBS or in my head. There’s the knowing I need to be pushy. Ask for referals and ultrasounds but not knowing how to. Being scared to….

And it leaves me pretty stuck to be frankly honest. Being chronically ill is hard but there is a life outside it. There is happiness outside it but sometimes the illness gets me down.

 

 

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.