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.

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.

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.

The reality of Anxiety

I feel like not many people understand anxiety. The havoc it can wreck on someones life. How it leave someone feeling trapped. With no way out. No way to grow or succeed.

People also believe that when people with anxiety have panic attacks it’s obvious and shows physical signs. But not all people with anxiety do that. Some just go into themselves even more and panic internally. Panic attacks are not always obvious to the naked eye. So when someone opens up to you about something making them anxious please don’t underestimate this or not believe them just because they’re not showing stereotypical outward signs.

People can also get anxious about a variety of different things. So don’t judge if what makes them anxious seems mundane or even irrational to you. A lot of us with anxiety know we’re being irrational, but that part within us that is anxious is stronger than that.

My anxiety effects me so that I struggle to call people or even answer the phone. This has got a lot better over the years but still really effects me. Especially if it is to do with solving a problem. Problems involving phone confrontation keep on cropping up in my life as well. I recently allowed myself to lose over £1000 that I should have been paid because I was too anxious to phone or even email and deal with the stress of sorting it out. My doctors lost my new phone number and I was too anxious to phone and sort it out.

Both of these situations have huge consequences for me, my financial security and my mental and physical health.

My anxiety also effects me in other ways. Like not being able to stay in contact with friends, because I’m scared I annoy them. Not even being able to apply for jobs/scholarships because they need a reference.

Wimping out of going to interviews at the last minute. Not sending formative assessments to be marked. Having to get to places ridiculously early incase your late. The list of ways my anxiety has effected me could go on.

Anxiety is real and it is debilitating, this is something that everyone needs to understand. It is something to be taken seriously and not just brushed aside. If you have a loved one with anxiety you need to help support them through it. Help them manage and overcome it so they can live a more fulfilling life.

We need support,and sometimes we need others to do things for us because we’re unable ourselves.

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.