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.

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.

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.

 

 

Insomnia, sleep, sleep as a spoonie

Sleep issues are something I’ve suffered with for years. More predominantly since I was around college age and stress got to me which added an extra layer to my sleep issues. When before it was just chronic pain and nausea affecting me.

I know sleep issues are something many adults suffer with, many adults moan about. Say “they haven’t been sleeping.” or “There’s not enough time.” or “They couldn’t get to sleep.” It is somewhat an epidemic. Quite possibly due to modern society. Modern technology and the expectation in some career paths to be 100% totally dedicated to your work and nothing else.

But sleep is essential for everything. And something that should be prioritised whenever possible. It can be frustrating when we can’t get to sleep and only have a maximum number of hours we could possibly get anyway. Especially for us spoonie’s who often suffer from fatigue regardless of getting enough sleep, yet also have the issue of not being able to sleep due to symptoms of our illnesses. It’s quite a difficult situation to be in.

I’m someone who has tried everything and found that although it doesn’t always work a must for me is to have some sort of sleep music or hypnosis to send me off. If not the slightest noise will disrupt and disturb me. And there can be a lot of noise at uni residences.

I’ve also found atleast a basic routine helps, trying to go to sleep not too early or not too late and if I end up being up a lot with a pain flair trying to get my sleep pattern back as soon as possible in order to catch up again is most sensible to reduce the effects of sleep deprivation which generally make me feel like I’ve been hit by a truck, or with some awful flu. Even if it’s 5-6 hours rather than 7-9.

I guess most non spoonies wouldn’t understand that. They may feel 5-6 hours is acceptable sleep, although not enough for optimal human health they can manage on that. Yet us spoonies have out bodies fighting against us anyway and often struggle to one extend or another with energy, especially if we try to live busy normal lives despite out illness so we need a minimum of enough sleep to manage well.