(Probably the most personal post I will ever write) Feelings that no one tells you about when you're ill for a long period

Hello,





Tonight I want to write whilst I'm still feeling pretty raw. Partly because it'll help right now to get how I feel down and partly because this way it'll be as up front as possible and I want to be completely honest, or else to me, there is no point writing at all.




Right now I'm not feeling really really down when I say "raw", as I've mentioned before I never am, I'm extremely lucky to never really struggle in that way, but just tonight, right now I am sad. Sad because I miss things being simpler. But I can also see that it is normal to feel this way in what I'm about to explain. Again, I'm not apologising for writing about personal things, but I'm not writing at all for attention; whether people know you're ill or not it doesn't make you better. I just really hope in being truthful, that even if just one person out there has felt the same and has never heard that someone else feels this way, that they find some comfort or even hope that I feel this too.



I want to write about the feelings that come with having my illness which is not life shortening but life impacting. I feel incredibly lucky to have any life, when life is taken from people every day. I'm blessed every day that I can at least get up that I can live and laugh, but I want to just write down the feelings that maybe people without my condition, may not understand. Right now, catching me at my rawest, I am most certainly sick of being the girl who is ill, the girl who gets chest infections so easily or dance for too long as my heart will go fast, or book tickets to festivals without often losing most of my money as I'm ill on the day.



I know I am venting, I know I'm going on, but I am being honest. You don't have to read it, but like I said if another person with any long term illness has felt this anger and frustration too, and wants to scream at the page "YES" then it's worth it.



There are many feelings people have when they are ill, and many when they are well. But what about the in-betweens? I want to try and explain these because they seem so specific to, we'll definitely my journey anyway.





I feel sad tonight because I feel old. That may sound strange and that's exactly why I write it. I once said this to my group of friends in all seriousness, and in watching their reaction, they at first looked confused, then sort of blank like they couldn't comprehend it, and then laughed - not in an offensive way, it wasn't personal, more in the way they hadn't taken in what I'd said to be factual. That's when I thought I need to write down all these feelings, feelings that a well me would have never understood either.




When I say I feel old, it is because my body gets so tired. When I say "tired" I don't mean the nice sort of sleepy drowsy Sunday afternoon tired (I had actually forgotten when people say "tired" they mean this tired) I mean achy tired, an ill tired. It's such a hard one to explain as I can't physically show people but I know that I'd never felt this sort of tired in my whole life before I was 14. It's more a fatigue you feel. It feels so deep the muscles all the way down my arms ache and all I can think to do is lie down.




I once had the flu when I was much younger, and if you've ever had that - you know the exhaustion you feel with that? - Almost as if there's so much pressure on your body fighting the bug that it's using all the energy you've got? If you know what I mean, then that's the tired. Except with my body, it so easily now slips into this at various points in the day, if I'm relatively well with my POTS. For example I wake up, a little refreshed, but not always, depending on if I have done activity the day before. This activity might only be seeing friends, going on a short walk and studying, and sometimes this activity means I wake up the next day already with this fatigue. If not though, I wake up, fairly ok, but after having a wash, brushing my teeth, making breakfast, dressing, and maybe walking to get my prescription (a 30 minute outing) I will already feel the start of this flu type of tired and then I will rest until I feel the energy come back again. If say I have a cold, I will not be like this at all. If I have any cold I struggle getting physically out of bed and my Mum will often have to help me wash and dress (I hate feeling unclean even when I feel too weak to have a conversation) and then I will get back into bed.


 A person may have a normal cold but still be able to go to work, and although feel they feel very tired, may recover in a 5 days to a week. I will have for around 2 weeks. For the first four days I'm usually in bed unable to move much at all, when I start to get up this is usually to move to the sofa downstairs for a few days, my parents cook my food and clean for me, I am physically too tired to do this if I'm poorly, sometimes I won't be able to stand up and walk across the room for the tv remote or my head will hurt too much to have the tv on at all (again not relaying this for sympathy although I'm so grateful for everyone's support and kindness, I am saying it because I realise so many people do not understand when a person with a chronic condition says they feel ill or "tired", how different their ill or tired may be.)




If a well person maybe gets a cold, you perhaps can still read, write and have conversations even in the middle of the virus, I can usually only speak in short sentences and struggle to sit up. Again I want to keep reaffirming I'm not writing to make people sad, I am writing in factual terms. This is what my condition means and again I want to say that I am still grateful, it is not always this bad. On good days I can do more things, I just can't do as much.



Part of this feeling "old" is a strange and rather vain feeling but one I will write down in the object of truth really, is that I don't feel young and I never feel physically attractive anymore. It sounds so silly to say it and I'm embarrassed. It shouldn't matter how you look at all, and it doesn't, I never judge others on how they look, but feeling ill definitely makes you not see yourself in the same way. I don't mean this like I don't care how I look, that is the aggravating thing, I want to put on my makeup, but sometimes I don't have the energy. I want to swim, something I've always loved and makes me feel healthy and happy in myself. When you are unable to look after yourself in this way you feel sad anyway, but when you are sweaty through your heart beating fast, your muscles ache, your head hurts like crazy and you struggle to speak, the last thing you feel is "pretty" or nice in any way. In fact it is so hard to see yourself as anything other than old or tired. I want to state that it doesn't matter at all how a person looks, and even at the time I know that, I simply mean the illness draws everything from you and at the time I may as well be eighty. This is honestly how I feel, yet I have seen eighty year olds who physically can do more than I can on one of my bad days.





When I don't feel as ill I don't feel so badly about myself, I don't think I'm amazing, but likewise I just feel my normal happy self, just Mol and I don't really care how I look to other people as long as I'm tidy and smart. But as soon as I get ill, I may as well be a hermit with no chance of marriage as I am so far away from even myself, never mind anybody else as my body struggles to repair itself.





Something else different from that I would've ever had to think about at 14 is, say I want to do an activity. Having limited energy means I can only do that particular activity on one day and then chose another for another day as I only have a certain amount of energy to use on it. For example, I love to read, but I knew when I started A Levels (and believe me I am forever unbelievably blessed to actually be doing them, I never thought I would one day have the energy to), that I couldn't really read for fun, or swim in my spare time - that is because with any energy I had I wanted to spend time (maybe a few hours a week) seeing my best friends. My friends mean everything to me. This I know was the right decision, but of course I wish I could be like normal people and socialise, hopefully one day be able to meet someone understanding and have a relationship, be able to regularly swim, study, read and maybe plan holidays on top of that with spontaneous gigs and days out like people ordinary people do. For now, I am happy if I am able to manage one or two of these activities a day and then alternate. So, if I see a friend tomorrow, I may be able to listen to music after but I may not have the energy to read. After living like this and thankfully gradually improving for six years, I know precisely when I can push my body to do a little more, or listen when it tells me to stop.





I of course feel sad for the obvious, that some things are completely off-limits even with assistance, although thankfully there are many ways of pacing most activities. An example of one of these activities though would be to go to a place like Alton Towers. When I was younger a big treat would be to go to a theme park. Now though, aside from not being able to walk far (a wheelchair would enable mobility), the very adrenaline from the ride itself, as well as the increased heart rate would make me ill quickly. Again, I'm not moaning, some people are stuck in bed as I write, I know how lucky I am to even have the energy to get this angry. It's just sometimes something needs to be said about all of these conditions that people don't see and are too ill most of the time to discuss.


 My aim is to become a journalist no matter what happens, and discussing things is at the very heart of this career. If all I can do to raise awareness and a greater understanding is discuss, then I want to; implicitly.





I get sad also that I can't express myself in the way I would like and this may mean potentially new friends don't see 'me'. This is definitely something that upsets me a great deal about my illness.


When I was younger, I loved making friends and for some reason unbeknown to me, it was something I found very easy. Now because of being too tired to talk or explain at times, I feel most people don't really get to know 'me'.


 So for example, if I am at college doing work, I don't have the energy to make many friends. It is never that I don't want to, anyone who got to know me when I had unlimited energy knows how chatty I used to be and fairly confident and although I am still these things, it makes me sad to think in the very situations, like college or work where there is potential to make friends, that I cannot because I need to focus on the work in hand (I really hope this is making sense!). When I was at school I loved socialising as much and probably more than studying (and I love studying!), but now if I study I can't socialise and visa versa. You cannot imagine how isolating this can be. You not only don't feel yourself within yourself, but tired, irritable and this blurs your judgement and impedes your memory (especially short term). It becomes harder to put yourself across to other people your age.





A big isolating factor is the fact that people my age may not have to think about health at all, but this means that if somebody has a normal cold for example, they do not understand how ill something like this would make someone with my body feel, and so don't think to stay further away to avoid infecting me. They will not do this to be mean, but because they may not have felt ill so deeply or not for more than a few days, they won't understand how easily I can catch something, or how when I have it results in the loss of two weeks of my life, one or two courses of antibiotics, and a mix of steroids, all for that one half-hour meeting with a friend.
 I understand you cannot live in a bubble and considering how tired I feel I think I do far more than some would in my condition, but likewise, there is only so much illness a body can take before the antibiotics that usually work, stop working etc...




There are also other isolating sides to becoming ill quite young, that are both embarrassing and sad. For example, never having really had a proper relationship at the age of twenty. I had small childhood relationships before I got ill, but at 14, when everyone is learning about boyfriends/girlfriends, I was too ill to get out of bed. I didn't leave the house much at all until I felt a bit better at 17, when I attended a short course where I met some lovely, wonderful people, but I didn't meet many my age that shared the same things or had the same interests. I then moved onto A Levels where I have been far too tired to make friends, never mind meet potential boyfriends. For me, I'd really love to have a boyfriend, a best friend to be there through the bad but hopefully through the good which makes up much more of my life now, but if I have to choose between a degree and boyfriend, the latter will have to wait.




Living in a small town where everyone grows up together and the few you didn't know to begin with are now at Uni, it is so hard to meet anyone new. I think it'll only be in the next few years when I take gap years that I'll actually have the energy to get to know new people on any level - be it friendship or more - anyway! The fact that I've missed this part of growing up definitely saddens me too, it's so strange, I was one of the first people to get a boyfriend and now I feel so left behind at times just because my path has been different. This in-turn creates other trivial anxieties that I never even questioned before. Questions like "Is it because I'm ugly, other people have boyfriends and I do not?" or "Is it something I'm doing wrong?" yet I know how superficial it is to think like this. My aim now is to be myself, and whether I meet someone or not, those kind of negative thoughts don't help anyone and I have to rationalise and stop being so self-centred to even waste my time thinking in that way.






All of the things written above, to state again, are not to be sad, they are simply factual and I am certainly not saying that my life is bad. In many ways I have so much more appreciation for things and for life that I would not have come close to having before I was poorly. So I think after listing some of the main negative feelings gained with a long-term condition that no-one ever seems to talk about, I want to finish by writing some of the million and one good things having my condition has brought to my life.






I have friends that I know are actual friends - the kind who sit at the end of my bed, the kind who give me piggyback's when I'm too tired to walk, or carry my bags if it means I can go away with them, or get me chairs to sit on in nightclubs and all the million and one things they do for me. I'm always grateful to not only have one or two people like this, but a whole group of people who I trust enough to see me ill, or quiet, or irritable. They are the people who see me dance, who see me run into the sea at midnight or have arm wrestles on pub tables. They see the worst but also the very best of me, because they are ones who deserve it. They are the ones I can laugh with about my feet turning blue so I "look like I should be in a morgue" or when some muppet on the bus decides I must not need a seat as I'm young and so I can't be tired and my personal body guards just glare at them *cough - Rachel Turner*.






I have the best family I could ever dream of - I do not mean that lightly. My Mum and Dad are possibly the best parents I could've wished for. They have been there through the sickness and the silence (that is sometimes just as bad), through the screaming in anger or the sobbing in despair and pain, they have endured all I have really even if they can't feel the illness itself, and they have felt everything else.
 They have never questioned or doubted my pain, they have always strived to seek doctors and answers. Without my Mum joining various groups, attending seminars and talks all over the country raising awareness of ME or POTS - my main condition, a fairly new one that GP's fail to recognise or even if they do don't have the ability to diagnose, I would not be doing A Levels. It is as simple as that, without my Mum not listening when the Doctor's stood baffled or informed us "There was nothing they could do, take a holiday", I would've never been given answers to what was wrong with me or the medication that is helping me so much.
 Without my Mum, I would not be writing this, I would not have the energy, without her leaving her job to look after me (I am very aware not all families have the means to be able to do this), I would've been forced to be in on my own and at times unable to shower, eat properly or look after myself.
 Luckily, as my Dad works, my Mum could afford to look after me, but this is not the case for everyone with ill children, especially in single parent families. I am so grateful that she could but I am also so grateful that she still helps me whenever and if ever I need it, because leaving a routine and a thing you take pride in that gives structure to your life can be so isolating in itself, yet she did it without question for me.
 My Mum and Dad have travelled to over 22 Doctors from Newcastle-upon-Tyne to London, From Sheffield to the Oxford in search of answers and I owe them everything.




I also have been given so many other gifts. I now appreciate every single second I don't feel ill in the slightest, it's such a light happy feeling full of possibilities that just passed me by when I was used to it. I appreciate the way the sun sets so much more, or the way the leaves look, or sunshine dappling on a lake. I appreciate the calmness and understanding of animals at times when humans fail to understand.




I appreciate that the only thing that matters in life is what you chose to do with it, or to better it as much as you possibly can. The only thing to hold onto is kindness and hope, and whilst other attributes such as intelligence and stamina are to be admired and of course are crucial in development (without intelligence there would be no medicine, and no hope for any of us), they are given simply by luck and the best thing we can do is help each other, even in the smallest of ways.




Moreover, even in spite of everything listed above I am happy, because I know the feeling of losing what feels like everything. Every day to me is a blessing and that is the honest truth. Yes, I started this post because I was sad, but everyone is entitled to feel that way, it makes us human. After writing, as is usual I feel so much better.






Thank you always for reading and taking the time to get to the end.





I wish you all the health and happiness in the world and if you take anything from this, don't feel sad, feel happy for what you have and appreciate it, if we all do that then we'll all be happy anyway :)




Love,
Molly xxx