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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What it really feels like to be Chronically Fatigued.

It’s the worst thing when you open up to something about your chronic fatigue when there response is “I get tired too.”

“I get tired too.” Is nothing compared to what we feel.

Chronic fatigue is this relentless exhaustion. Like nothing you’ve ever felt before. It’s sleeping 9+ hours a night and still struggling to even complete basic tasks, like showering on the worst days. It’s being so fatigued that sitting up can feel like running a marathon and even watching the simplest of TV shows can be impossible to follow.

It’s struggling to walk even 10 minutes down the road without your legs feeling heavy, without feeling like you may just collapse from exhaustion right there in the middle of the street.

Breaks from chronic fatigue are short lived. You may feel good for a couple of hours, not even good. But better. Functional is more the term to use. And then you will be overwhelmed by it, excited by it and end up overdoing it. That overdoing it throws you straight back into that horrendous fatigue where it feels like you can’t even accomplish getting out of bed.

The worst part is the mental side. Mentally you want to do things, be productive. You have the drive but your body will just refuse to function to the capacity you want it to. There’s only so much pushing through that one person can do. Then there’s the guilt and the shame because everyone else around you is moving on. Making things of their lives. While your mostly stuck in bed, struggling through basic tasks. The shame hits you more on the good days, though. Despite the fact that one good day means nothing.

Being chronically fatigued is hard to manage. It can’t just be fixed by drinking coffee, exercising, eating right or getting adequate sleep. Managing chronic fatigue involves finding the right formula of treatments that work for you. That reduce your symptoms just that bit more for your life to become more normal again.

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.

To people who have never experienced the hardship of mental/chronic illnesses…

Please be kind, we are incredibly fragile people. We break easily. Both literally and metaphorically speaking. We need treating with care. Please remember this before you say anything judgemental.

Please don’t say any of the below list:

  • Why don’t you just try? – We are trying. So much more than you can see. Unfortunately, us spoonies have to try so hard just to appear as a normal functioning human being, so on some occasions our work may appear to be lacking.
  • But quitting’s a bit stupid/There’s no point in just giving up – No it’s not and yes there is a point. We need to prioritise our health in whatever way possible. This  may mean quitting a job  because it’s harming our mental health so much. Or taking a year out of college because we’re too physically ill to cope with the demands.
  • It’s not that hard really – Maybe not to you but for us it is. Remember we are different people, have different experiences and handle things differently. Yes you may find it easy to lead a group or socialise but for others of us leading a large group puts us on the brink of a mental breakdown and you’re not helping this with the constant criticism
  • Maybe it’s not the job it’s you – Thanks, just more reassurance that I’m a useless piece of crap that deserves no place in this world. Thanks.
  • Any judgement on why we don’t work etc. – Again, not helpful. Maybe put yourself in my shoes for once. Try spending 9 years of your life terrified your dying of a serious illness with no one to confide in, only to find what you likely have is lifelong, life damaging and can only be diagnosed through surgery. Having depression and anxiety with minimal support. Try self recovering from anorexia. Then see how much time you can allocate to a job on top of your study demands.
  • Just get on with it – Really? I am in severe pain, have a whole host of other symptoms and a lot of mental crap going on in my head on a regular basis and you’re telling me to just get on with it? I’m doing the best I can, and that’s all that should ever matter.
  • Why don’t you… “Go vegan” “Try Yoga” “take x,y,z” “get out more.” etc. I’m sure we’ve all heard all of this before. However kind of a place in you’re heart that these suggestions come from they really don’t help. Trust me a lot of us have tried it all so we don’t need your stereotypical suggestions. Unfortunately for a lot of us these suggestions will never fix us and only ever provide minimal relief.
  • Are you okay? – I guess it depends on how you say it and who you are with this one  because sometimes it can be a blessing, but with some people this just really bugs me. Like of course I’m not okay but I’m not going to open up to you when I either barley know you or you speak in that condescending way. On top of that it’s been so long now that I have a standardised yes response to most people, even when I’m in severe pain and it feels like the whole world is crashing down.
  • You’re a burden – Or anything that could have that effect. A burden is the last thing that we want to be. Don’t tell us this, please. It hurts so much.
  • You’re just doing it for attention – No we are not. This is real. Telling us we’re doing this for attention isn’t at all helpful it makes us doubt ourselves even more than we probably already do.
  • You need a hobby – You know what I agree, a proper hobby would be nice. A sport maybe. But the reality is for some of us, working full time or studying full time can take so much away from us that things we once enjoyed are slowly taken away and slowly become less and less frequent things to enjoy. There’s a long list of things I did but have ended up now not doing regularly because it either hurt too much or was too exhausting to carry out after the days commitments have been completed.

I’m sure there are a million more things that people shouldn’t say but will keep it to this for now. Just please even if you can’t empathise at all try and be a little more understanding of peoples individual circumstances. You never know the full story so try not to pass such judgement on their character or work ethic.

8 reasons why I’m thankful for my illness

This probably seems somewhat strange to some people. Why would anyone be thankful for their body hating them. Limiting their ability to enjoy life, live life and keep up with their peers in all aspects of life. But I am, however awful it may be sometimes and however much I hate my body at times and long to just be normal.

I am thankful.

In this post I will state the reasons why.

  1. Helped me gain perspective – since realising that what has been wrong with me in the last 9 years or so is actually a chronic illness of some type has helped me gain perspective on life. Life isn’t just about getting the best grades, all the work experience  possible at the best law firms or chambers, or career related equivalent to anyone reading this. Health and happiness are far more important than those things. Yes grades can be important, and yes work experience is useful but it’s not the be all and end all. Health on the other hand is. And I’m referring to both mental and physical in such a context.
  2. More tolerant and understanding – Since recognising I’m chronically ill myself I understand more that sometimes you just can’t manage to go on with your normal daily life anymore. Yes I still get very wound up at people who have no excuse and can’t be bothered, especially when you’re reliant on them for the end goal. (Be that a performance or group project). But I’m a lot less angry about peoples commitment issues than I used to be because although some may be lacking because they are making excuses. You never know what’s going on in someones life completely and other people may have too much going on, or be suffering from sometimes debilitating mental or physical illnesses.
  3. Being physically ill helped me recover from my eating disorder – Sounds a little weird I know but while I was a fairly symptom free human being for a few months I ended up exercise addicted and healthy food obsessed as an alternative to anorexia. My symptoms getting worse helped me find a better relationship with exercise purely because it hurt too much for me to continue burning 1000+ calories a day. And I stopped being so obsessed with eating healthy because of the extreme fatigue. Sometimes cooking up a healthy meal was just too much effort.
  4. Stops me from going full on work-a-holic – I have this tendency to me. But being chronically ill helps me at-least try and be a little gentle on myself. And even during stressful busy times reminds me I need to make enough time for sleep and some time for rest.
  5. More admiration for people dealing with chronic illnesses – I think before recognising that I most likely have endometriosis, upon finding out Stephanie March, Halsey, Marilyn Monroe, Lena Dunham and any of the other many woman had endometriosis I wouldn’t have cared all that much. But now, knowing the pain and as someone who likes to act, sing and dance myself I have much more admiration for these people. You have no idea how hard it is to maintain a character with chronic pain of any amount that is more than what can be ignored, let alone when you can barley walk and stand straight with the pain until you try.
  6. Allowed me to connect with people I never would have otherwise – This one is fairly self explanatory. Social media is a wonderful tool but never would I have found and connected with other ill people had I not been ill myself. Purely because I would have just lacked the ability to understand and empathise with what they were going through.
  7. Being able to raise awareness and help others – I guess in a way being chronically ill has given me an opportunity. An opportunity to tailor my career to go into medical or employment law if I so choose.  An opportunity to share information online and forever increase my own knowledge of not only my illness but also those of others.
  8. Able to see when others are suffering – I’m sure this seems a little odd but I seem to have developed some sort of a sixth sense with some people. I can see when there’s something wrong when they’re suffering. Even if no one else would pick up on that. Be that light touches to they’re lower abdomen, or stance. It may even be a change in attitude or noticing how tired they look. Sometimes there isn’t even an explainable tell and I just have a hunch.

So yes, these are the reasons why I am thankful. The lesson here is there is good in everything. Even if it doesn’t seem good.

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.