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.

Advertisements

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.