Hi,
I hope you're all really well.
This post is a bit of a funny one, it's one really to get my feelings out in a way that makes me see that all emotions are perfectly logical and they're just a result of the situation you're in. I feel like writing a post whilst I'm feeling all the feelings living (and still having the loveliest time or trying to most of the time - I don't want to be doom and gloom) with my condition. I've already spoken about POTS and ME in some of my other posts so I really won't drone on again, I just want to talk about some of the emotions having a condition has given me, mainly selfishly to help myself vent but also maybe in the hope that any one else going through the same doesn't feel quite so alien and very much like there's loads of people going through the same (as unfortunately there is).
I'm a naturally happy person, I'm incredibly blessed to have never been really down or anxious prior to getting ill (apart from a bereavement or upheaval etc when it is normal to feel slightly shaken). I can say now (and I know I'm incredibly lucky to say it) I don't get down down, being ill makes me incredibly sad and I do have times when I'm ill for the second time that month where I let myself cry, but it is never to the point where I feel everything's useless, I never get that low, I see that it hurts now but it won't in a little while and to be able to realise this is a god send I know, as I know in conditions such as depression it's impossible to see past the clouds. But like I say of course I get sad. Because having a condition that falls upon you at the age of 14, it is never something I feel I'll ever be used to and so as I get better I am happy, but if I start getting ill and run down obviously I get more frustrated and sad until I get well again. I'll explain this, for example in my case anyway, I was born with a physical disability, and I must state that I have been INCREDIBLY LUCKY that even though it impacted my life it never did to an extreme, and so it's never bothered me. I say that in a way that having Cerebral Palsy never stunted my development, I attended mainstream school and was quite rightly never treated any different, but given amazing support when needed. Of course I may not feel so peaceful with a disability if it was more debilitating and I'm not shying away from that fact at all but I'm only meaning to explain that in my particular case I am at peace with my disability as I do not know any different. I've had it since birth and have never known not having a tight leg or a little bit iffy balance and it was never something that made me angry. However, when you become ill in your teens it will always be grieved (in my case anyway) because you know full well what you used to be able to do that you can't now and this self comparison is inevitable and probably one of the biggest contributors in making illness so hard to bear. Don't get me wrong, even if you had always felt ill, on the days your muscles absolutely sting in your arms or you feel a sort of fatigued that literally disables your ability to think and communicate, I don't think you need comparison to feel a mixture of every emotion that you feel with an illness and that I will go on to explain. Again, I want to stress, I aren't writing for sympathy at the end of the day every body has struggles, many of us have illnesses or conditions, I'm just writing as I think it's so easy to see someone who's ill, even hear what they have wrong, think "oh gosh that's awful" "how do they cope?" But acknowledge that you can't go any deeper than that and proceed with the rest of your day. And that is normal and so you should, but I think in this day and age more than ever it is good to be honest about physical and mental health and how both have a symbiotic relationship.
With my condition and I can't speak for anyone else's experiences, as everyone is so unique I can safely and whole heartedly say that I've felt every emotion or near enough that I see as physically possible. This is probably normal as if you actually think about living, nothing affects you so completely and submersively as being ill. I must state that my condition is not a terminal one in any means and is just (and I say just as I am so aware that more aggressive conditions such as cancer are completely different and I have no grounds to even contemplate how emense the physical battle against such awful illnesses may be) life impacting. But it definitely is life impacting.
It seems with each stage of illness different emotions arise and it is most definitely when you are in a better physical condition but not yet 'well' that the emotions are so hard to deal with. For example when I was first ill I was completely bed bound. In November 2011, I remember as I had just gone into year ten and had sat one of my maths GCSE papers, that after having flu like symptoms a couple of weeks before, I couldn't get out of bed one day. I can't physically explain how ill I felt, it is actually impossible but I'll try. I'd never ever ever ever felt like this in my whole life but it felt like I was being poisoned in some way. As I became aware of the feeling in my arms I realised it felt like bits of something we're actually sticking through them, but nothing was there. My head had the most pain in it I had ever felt and I phyiscally can't explain the exhaustion. The natural light coming into my room was too bright to process and I couldn't find the energy to say more to my mum than something along the lines of "Mum, I feel so ill. Something's different. Something's wrong."
Now, as far as emotions come into it, it is this point at my absolute weakest that you would presume you feel most sad/scared etc but you actually don't, the weird thing is you feel too ill to actually emotionally FEEL anything . It's the strangest concept, it's
like you're there, but you're not all there and you are aware you should feel the most petrified you've ever felt but you don't. You lie there and hope. I can remember it's all I did. I hoped for the pain to stop.
Even writing this now, I'm stuggling not to cry but now I'm on a different stage (thankfully a better one) and my tears now come easy. After going through the worst stage it is only when you start to get better that all the built up emotions come out and I was told it would be normal to grieve, I suppose similarly to a death, but that it emotions would come and go in the realisation that I'd "lost" myself in a way, or rather lost my abilities from before. After being bed bound and now up this included the ability to talk to people for ten minutes, study for more than ten minutes and part of my memory went (my short term memory, so often I wouldn't remember what I wanted to do as I was trying to do it). After being like this for a good year before my diagnosis of POTS which thankfully has treatment in the form of medication, my emotions came with each bit I got better. In this time it was really only my Mum, my Dad, Janet Sturland, Jude Amison, Ella Matthews, Rachel Hargreaves (Thank you, I love you) Ann Hurst (Thank you for absolutely everything) and my tuitor at the time who saw me like this. I must explain even other friends or family were lovely but when you are severely ill you are never actually seen by the outside world in the way that you think and so many are suffering right now in unimaginable ways but you will not actually see them until they are in a state that is well enough to leave the house. In this time I left the house to see doctors, occasionally see my Nana and Grandad (although I couldn't talk much when I got there), school if it was at the point where I was in a separate quiet room (but this was too draining and I soon was able to be home tuitored), and to get out my mum would take me on days I could manage it to drive to see horses. This is another feeling that I only felt when ill and that you can never un feel. When everything is taken away from you, your ability to go out etc, when it comes back you appreciate every single second. It also means you appreciate different aspects of life than you ever did before. If you haven't been out for weeks, you appreciate the way the clouds float across the sky or how fragile the leaves on the trees are. You find, having an illness means (and this is probably the scariest thing you have to realise) you are completely on your own you know. When I say this I don't mean I didn't have the most wonderful family and amazing friends, I did, these people were researching Doctor's when I was too ill to talk and driving me to consultants, but what I'm saying is, you realise you have loved ones that you love and support and they love and support you, always and it is life's greatest gift, but you are on your own. You realise as you lie there unable to talk or move, as your parents try desperately to hide the concern on their faces and comfort you in any way they can, we are all born and all die on our own. The main thing to remember is not to be scared of this, the love of other people around you is all that ever matters and makes you understand that the love of people is the only thing relevant. It also means that nothing can ever scare you really in the same way again (or not tempting fate, it would be hard to).
It is when I was getting better that one day it was like I woke up. It's so odd to write this down but this is why I want to. It was like one day, when my body was physically strong enough to be able to manage it it said "right you're going to feel". It was then that every possible emotion that I have ever felt started. When I first could "feel", as I was still quite ill, was so so so scared. Like petrified. I can't explain this as you'd think if I'd already been bed bound and was getting better there was no need to feel scared anymore, but everything from the past year obviously needed to get out and so the sheer fear of how debilitating, unfair, unjust, cold, calculating, hard, unbearable nature of illness started to hit me. It kept me almost as scared as if to shake if I thought about it for long enough, but luckily the body is clever as it stops you thinking if you get too tired to preserve energy and so it could never get too much, although I did have two instances of panic attacks. After this and during this phase came the anger. Now I can't explain how before I was ill I'd never really felt anger. I'd felt annoyance, frustration, sure, but not on a big scale and is honestly never felt anger like this in my whole entire life. I can't explain it but I only hope never to feel like it again. I never wanted to hurt anyone, im never a physically aggressive person anyway, it just isn't my way, no matter how angry I am, but I wanted to get it out vocally, to scream. It is difficult to explain the sensation except it was the angriest you can possibly imagine feeling and it excelled that (I had no idea you could feel this angry) at the time it just came on at random times. It was completely bizarre, I was find one minute and the next I'd have to turn music up really loud, or get my mum to take me for a drive, to stop me thinking, to stop me feeling to distract me, as obviously feeling in themselves tire you out phyiscally and if I wasn't careful it be a vicious circle of tired to angry. I can't remember exactly if I knew why I was angry but at the time it just seemed like everything that didn't need an answer. Questions like "why do people have to suffer?" "Is there a God?" "Why did it have to happen to me?" "What have I done to deserve this?" "Is there there any way I could of prevented this?" Crossed my mind. One day the anger calmed, and although anger is probably the emotion I feel most now through my illness, it's no where near the type of anger I had when I was first grieving. I felt sadness, but I feel it is only now , when I am 100 times stronger than I was, but still struggling a great deal, that I feel sad I would say. It's odd really. I am definitely sad that I am not me, that I am "me" but am unable to do all I am capable of (just at this present moment). I think it's because I only feel real sadness when I think there is no hope and there is ALWAYS hope. I can promise that more than I can be sure of anything really. I just know that out of the chance that I was born and exist, is the smallest of possibilities, yet I am here and I know that I will strive my whole life until I am better. I cry some days because I am just sad on that day and I have learnt it's ok. I only cry when I am ill, if I am well, well, then I'm lucky as I'm happy. When I cry it is because, at the time and I acknowledge it isn't forever, I am not at uni, or like at the moment, I've tried to study all year, but I keep getting infection and cold each month, I get sad that I can't revise as much as I want, that I can't attend classes, that I feel so ill, that others have to suffer too. That probably makes me the saddest of all.
But you also feel a little of every emotion with this illness, sometimes, on the day before you are becoming run down, even before you know you're run down you feel like everything is too much. This is weird for me as I've never in my life had energy and chosen not to go out and do something. I literally want to do everything. If I've got the energy, why wouldn't I?? Life is so short. There's also times when I can't relate to people my age and this can be very isolating at times. I think going through what I have means that I have a good perspective on things, yet I now can't relate to trivial things that other teenagers worry about but I sometimes feel myself pretending to as to not look patronising or pretentious. I by know means no everything, when I'm 80 I'll probably still be getting curved balls chucked at me that make me feel naive, but I can't understand people who moan about their parents (that is if they're just being supportive), or people that "can't be arsed" to do their work when that's all I want to do. But at the same time I understand that it's only because they've never been in a position where they are unable to. There are many times I wish more than anything I could relate to the trivial things, that I did not see things as seriously as I've had to, but that's just it I didn't choose to, I just was made to. I think it's so important when I am well enough and have tolerance to joke about everything though, I always have, so it's important not to let illness make me dull or cynical. There are other feelings too that have come alongside my illness. Anxiety strangely is one of them.
I'm naturally a laid back person, if anyone sees me well, I genuinely am, but when you are ill and studying, despite needing to be more laid back, the very nature of never knowing if you'll be well for deadlines/exams is quite stressful. Getting coursework may seem stressful in its own right but trying to do it with a third of the energy of your peers can seem a minefield. With me, there definitely is direct correlation with feeling physically ill and anxious though, as it is only when I am tired that I start to over think. This is true of anybody I think, it is in tiredness that you more easily feel down or anxious and I guess having an illness where you are fatigued extremely easily compounds this.
I just want to finish on a positive note as I want to reiterate again, this post wasn't to go I feel this blah, blah, blah, oh it's awful blah. Because there's no point in moaning, yes it's hard at times, but why would I moan? I've got the best friends and family anyone could wish for and I am extremely lucky, I may have dips but I'm in a much better position now than I was three years ago, this post was to vent, to inform others and really to raise awareness of how even if you don't suffer with mental illness, issues with mental illness arise as a natural part of physical illness and the grieving process.
Thank you for reading, I didn't intend for it to be this long at all ahaha.
Best Wishes,
Molly xxx
