6 weeks of 2nd year

Hello again readers of my blog. Today I am coming to you after 6 weeks of second year. Well six weeks of lectures. 7 if you count freshers week and 8 if you consider the fact that reading week is almost over.

The last 6 weeks have been hard. I started out trying to do it all. climbing, model UN, my two committee responsibilities and of course that all important degree. Swiftly realised trying to do it all wasn’t going to happen. It’s not good for my health. And after a 2 and a half week migraine I’ve learnt I need to start taking it easy and listening to my body. Which means sacrificing things I love to prioritise my health and that all important Law Degree.

It also meant learning to say no because lets face it if I haven’t been able to get out of bed, or even lay in bed and watch TV all day, let alone do any uni work. I shouldn’t be leaving the house to go to something extra curricula. Even if it is one of my committee responsibilities.

Saying no is really hard. Not being able to do what your body should be able to do. Not even being able to push through anymore it really frustrating. Especially if your someone like me who likes being busy. When you physically can’t it hurts and it’s an adjustment process.

Over the last couple of months I’ve pushed myself well beyond what I feel healthy enough to do on a daily basis. I’ve got behind on uni work and somewhat caught up again. And all I can say is I’m proud of myself for what I’ve managed. I’m proud of my strength in dealing with all of this and still committing myself to my uni work 100%. Not using “I’m not really feeling well.” as an excuse to slack off and skip all my lectures or not put the effort I know I can into my seminar preps or coursework assignments because I can’t really be bothered.

At least now I know. I’m doing the best I can and no matter what comes from it, at this time in my life I can’t do any better. Not without sacrificing my health even more than I probably already am.

It’s like being more ill has made be more motivated to do my uni work because feeling too ill to do things a significant amount of time leads to a lot of boredom if you don’t at-least try to push through some of the time.

Over the last few weeks I’ve been pushing for diagnoses. Having blood tests, pelvic ultrasounds and going to physiotherapy appointments. All of which are enough to exhaust me. I’ve also learnt how much love and support I have around me. I couldn’t be more thankful for it. It’s funny actually how much support you get when you start opening up about your issues and trying to be honest about what is going on.

But yes, after the last few weeks I can tell you that anything is possible. Well not anything. You have to choose your priorities, but once you set your heart on something you will manage it. You may just have to take it at a slower pace than others do.

I can tell you that studying full time on a highly demanding course whilst being chronically ill is hard and sometimes it feels impossible. But I can also say that if you want it enough you will get through it, somehow. It may take you 4 years instead of 3. It may mean you can’t indulge in the typical “uni life” as much. But you can do it.

I am going to take that “I can do it.” Forward into the next few months and final year of my degree. Because unless I get so ill that I’m forced to drop out then I can do it.

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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.

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.

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.

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.