I’m Not Okay

As open as I am, I hate admitting to not being okay, to being worse at any point. I always put it off and tell as few people as possible in the vain hope that it might just go away if I don’t think or talk about it. This is a ridiculous way of thinking and behaving and yet, it’s what I do every single time. It’s not working though, it never works, and it means I have to struggle and deal with it all on my own rather than with help or understanding from those around me. So here I am, again, sadly having to say that I’m worse, that I’m not okay. You might be wondering why so many of my posts seem to be about deterioration and why so few are about me getting a bit better, I wonder this sometimes too, I think it’s because the better bits are still so challenging that it doesn’t often feel like an improvement, just a bit less bad (I know that sounds pessimistic but that’s how it feels, owing just £1000 instead of £1050 still means that you’re in debt!). I think it’s also because I’m busier and happier when I’m not as ill and I don’t immediately think to blog about that stuff, I just make the most of the things I’m finding a bit easier or become able to do because I’ve very much learnt the lesson that it may not last and that it may get taken away again.

So yes, I’m currently not okay. I deteriorated at the beginning of May and didn’t get back on track after that and then last week I got a lot worse again and am now struggling with any type of commitment or decision-making, even deciding what or when to eat is really hard now. I feel on edge almost constantly and just feel like I can’t cope. With what? I don’t know. There’s just an overwhelming feeling of not being able to cope. My IBS has also got a lot worse recently. I’ve mentioned before that it got worse at New Year, specifically the morning of any visits or trips I was making, this then got loads better for over 2 months and now it’s back with a vengeance! I’m in pain every day, whether I eat, don’t eat, or have something small, I’m in a lot of pain, suffering from terrible bloating, getting random attacks and severe toilet urgency. This then makes my anxiety worse because I worry about getting attacks, about being unable to do things and about having attacks outside my home. For those of you who don’t have IBS, you might not understand why this would be an issue but with toilet urgency I’ll have no idea I need the loo and then suddenly have a very urgent need to go and if I don’t get to a toilet within a few minutes then I’ll likely have an accident so when I’m feeling like this I’m very limited in where I can go out to and even panic about people using my shower for too long as we only have one toilet in our flat.

Unfortunately, this deterioration has also caused a bit of a confidence crisis in me. I get these every now and again and they’re really difficult to deal with, especially when the anxiety is bad because they feed each other. This deterioration has happened so suddenly and so out of the blue that it’s really had me questioning what the cause is and how and if I’ll ever get better. I’m very good at coping day to day, I plan short term and I focus on getting through today and tomorrow and this week or fortnight if I’m well enough to think that far ahead. But when the rug is pulled out from under you and you’ve got no idea why, or when it might be given back, it’s difficult not to start panicking about the future and wondering if you’ll ever be free from this. The randomness of these episodes is a constant reminder that I’m not in control, not of my condition, or of my life, that I’m at the mercy of my anxiety and the environment around me and that’s a really scary thing because if I can’t control this then who’s to say it’ll go away? Who’s to say that I’ll ever get better, ever be free of this, ever be “normal”? I mostly get through each day because I “know” that I’ll get better, I “know” that one day this won’t be my whole life, anxiousness won’t be my first thought, but during times like this I’m left wondering if that’s just denial or wishful thinking, if it’s all just my imagination and actually this is the best I can hope for. This is why I keep so busy all the time, why I’ve always got multiple activities on the go and I don’t stop, it’s why I always have the TV on, multiple social media accounts open, my phone next to me and heaps of colouring books started, because I have to move from one activity to another, to another, because otherwise my thoughts catch up with me and I just can’t let them. I can’t keep wondering if this is it because it leads me to really dark places, really quickly. If this is it then I can tell you now, I’m not ok with that, I don’t want to live like this long-term. I keep trying to kid myself that 3 years is temporary, it’s not forever, it won’t be like this always, I steer clear of listening to the voice inside my head that whispers each time “but what if it is?” because I don’t have a solution. I felt suicidal for 3 years in my teens and spent every day thinking up all sorts of horrible ways to end it all, I’ve realised since that I don’t have it in me to act on it. Many of you will think this is a good thing, I know my family are hugely relieved when I tell them this, but it’s very hard having that option taken away. Most people I know who are mentally ill have thought at some time that if it ever got bad enough, if it got just that little bit worse and even less bearable, that they’d end it all. Can you imagine what it feels like to know that you couldn’t do that? That you don’t have a way out? That you’re at the mercy of whatever happens to you because you can’t take that ultimate step to take control and take yourself out of the situation? For religious people they almost have a safety net, they believe that God will never give them more than they can handle, that they’ll never be alone, but for those of us who aren’t religious, who don’t have faith in a higher power, you can’t feel more isolated or scared than when you realise that you can’t and won’t end your own life. Those who say it’s the coward’s way out or that it’s easy couldn’t be more wrong, if it were easy I’d have done it, years ago, I wouldn’t have kept going and gone through all the things I’ve had to. I’m glad I haven’t, I’m glad I’m still here, but I’m not glad that my way out has been taken away, that I’m at the mercy of my conditions and that no matter what they throw at me, I’ll have to keep living through it.

Trying to get through each day currently is a real challenge. I don’t even want to get out of bed because it means I have to face things I don’t want to or feel able to face. I don’t want to have to see people or make phonecalls, I don’t want to deal with messages or emails. Decisions are an absolute nightmare, from when to shower, what to eat, which book to review next, to whether I should phone the doctor, go out, or visit family. My head feels so full, like it’s about to explode. I’ve had vivid, bad dreams every night for at least three weeks, I go to bed too late every night because I’m scared of shutting my eyes because I don’t want to have to live through these horrible dreams for another night. I stay up watching TV on my own, trying to tire myself out, trying to distract myself enough that maybe tonight will be different and I won’t dream that my boyfriend’s left me or that my brother’s been in an accident or that I’ve been in multiple arguments with people. I’m so terrified of failing, of letting people down, that I’m now managing to actually do those things, the anxiety is so bad that I’m unable to do things I’ve signed up to do, I’m having to cancel last minute because I’m feeling so close to vomiting or I’m rooted to the spot because I feel like I’ll collapse. I can’t cope with any pressure or demands because it just reminds me that I “have” to do things and the voice in my head screams that I can’t, that I can’t cope and then makes damn sure that I won’t be well enough to even try. It’s getting so bad that I’m considering multiple times a day just cancelling everything, refusing any more books to review, saying no to all visits or trips, and logging out of all methods of communication so that I’m not feeling bombarded by demands. But I know I can’t.

The last appointment I had with my psychiatrist has stuck so firmly with me, he said that avoidance was the worst thing I could do and would only make me worse. I know this. I know that on paper this is true, I know that avoiding just reinforces that I “can’t” do these things and will then make me question even smaller tasks but I also know that the things I’m told about how to get better just aren’t working for me. I was told that going out would get easier, it randomly does, and then for no reason it gets harder again with no pattern to it at all. I was told that after doing something once it gets easier, I can’t think of a single time this has happened. I was told that if I tell myself I can do it and that if I have positive experiences that I’ll regain functioning in that area. From day 1, I’ve pushed myself to go out, I’ve forced myself out of my ever-decreasing comfort zone, I make myself see people, make phonecalls, send scary emails, I can honestly say that almost none of it gets consistently easier. There is so little that I can do now that I couldn’t do 3 years ago. Even the photography isn’t helping as much as it was, though I’m very hopeful that once I’m a bit calmer and better able to focus I’ll be right back into it again, but even the thought of all the things I could photograph didn’t stop me being paralysed by fear this weekend and having to cancel plans for my boyfriend and mum’s birthdays. I know that part of why I’m worse is because I’ve put so much pressure on myself to be ok, to not affect other people’s plans and to be able to participate because I’m sick of things being altered for me but this time I pushed myself way too hard and didn’t manage to do any of it. I’m trying to give myself a break, to not give in to the screaming thoughts that I failed, that I ruined their birthdays (I know they’ll be furious that I’m even suggesting thinking that way), that I should have been able to do it and should have just tried a bit harder. I know that the truth is that I couldn’t have tried any harder, I’m burnt out, I feel completely crushed inside, I don’t have any energy left to fight any harder at the moment and almost all of that energy is going into just keeping swimming, keeping my head above the surface and not falling into the abyss, not giving in to the incessant worry and anxiety, not giving up altogether and just cancelling everything because I know I’ll just feel even worse, even more of a failure if I do.

You can probably see why I don’t tell people about this stuff often, because it’s scary and it’s depressing. It’s not just one deterioration, it’s not got a proper reason, it doesn’t have a time limit, and my worries aren’t limited to just this period of being worse, they drastically expand so that I’m then worrying about the future, about the rest of my life, about whether my boyfriend or indeed I can possibly cope with this for whatever length it lasts. It probably sounds like I’m feeling really sorry for myself and having a pity party and in many ways I am but I’m not seeking sympathy, I don’t want people to feel sorry for me, I just want to stop feeling scared, to stop deteriorating for no reason, and to be able to cope with normal, everyday things without wanting to just scream at everyone to leave me alone and stop putting pressure on me. I feel like a child at the moment, I’m scared of everything, unsure of myself and feel unable to commit to anything or deal with any stress or pressure. I’m trying to take pressure off myself, not give myself deadlines, have a break and get more sleep, I’ve gone back to taking my beta-blockers regularly instead of as and when I need them, I’m trying to up my fluid intake and am now taking a multi-vitamin in the hopes it might help me as I’m almost certainly deficient in things with my digestion being so poor at the moment. I’m even considering starting Yoga or Pilates videos in the hopes that it might help calm me down, get out some of my nervous energy and maybe even help my sleep. I’m doing everything I can think of to help myself, but right now I’m scared because this might go away tomorrow and I might be back to my “usual” level of functioning, or it might take weeks or even months for me to get better again, I could even get worse. I’m doing my best to stay positive, to stay busy and not to think too deeply or often about this, I’m trying to talk about it so that people around me know what’s going on and what will and won’t help but even when this deterioration passes and I go back to my “usual” level of functioning, I don’t get to just make the most of that, I’ll still be anxious every day, I’ll still struggle to go outside, to do anything remotely normal, and I’ll still have the threat of deterioration hanging over me every day because I’ve still not worked out what causes or triggers these dips and therefore still have no idea how to ward them off or even see them coming.

I feel so utterly overwhelmed, so consumed with fear and worry. I wonder when I’ll ever be okay. I wonder if I’ll ever be okay. Most of the time I can’t even explain all of this, or any of the other stuff swirling around my head, I can’t explain what or why, what the reasons are that I don’t feel able to cope, why today is different from other days and I’m rooted to the spot when I normally fight my way through. I can’t express how tired I am, how much my body aches, how uncomfortable it is to be able to feel your intestines wrenching in every direction, how it feels to be in my head and feel like your thoughts have been hijacked, like you’re no longer in control or have any say over your life. I don’t want to express how tired I am of fighting, how angry I am that every day is a struggle, that I can’t change the world like I want to or make the difference I feel I was born to make. I just hate having to face up to the fact that I’m worse, that this has happened again and that three little words are so capable of instilling fear and feelings of failure in me – I’m Not Okay.

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5 comments

  1. Hi you wonderful lady thank-you for sharing your pain. I don’t feel sorry for you I understand. I have suffered with most of what you are going through at different times of my life. You are so brave talking about it and don’t feel ashamed talking is good. You will get better it will go away. One step at a time. Find what works for you it may not be medical intervention seems to be the only step drs know. I found group therapy, acupuncture and talking about it and not feeling guilty or embarrassed was the best cure for me. You must also learn to say NO and nit feel guilty about it. I wish you well and all the best. Your awesome for being honest and sharing. Please let me send you one if my colouring books ‘crafty colouring ‘ and I totally understand if the answer is NO but it would make me happy to know it may have helped you and given you enjoyment just for a moment. Although it would be awesome to have it reviewed I would also love the fact it was a some help it getting you it to a bettet place. Sending you my heart felt regards Claire Dadswell

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    1. Thank you so much for such a lovely response! I’ve certainly realised that medical options don’t work for me but finding what does is proving a struggle. I have lot of coping strategies for the better days but as yet, most of those don’t touch the bad days. Yes, learning to say no is not coming easily to me at all, I’m really bad at it and I only say it as the very last resort and then feel awful about it. It’s something I’m trying to work on. I’d love a copy of your book, that’s so kind of you to offer. I’ll review it if I get a chance but everything is taking much longer than usual at the moment as my head feels so constantly full so I can’t even guess how long it might take, I’ve got books here that I’ve had for far too many months that still need reviewing, another source of guilt and stress! I’ll email you in a minute, thanks for being lovely! xxx

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  2. “I feel on edge almost constantly and just feel like I can’t cope. With what? I don’t know. There’s just an overwhelming feeling of not being able to cope.”

    This is exactly how I was for those few days before I had my meds upped. It came completely out of the blue with no exacerbating circumstances to cause it, after years of plateauing at a “functioning level”. I’m so sorry you’re feeling like this over a longer time because I really didn’t know how to cope when it was just those couple of days.

    “I’m very limited in where I can go out to and even panic about people using my shower for too long as we only have one toilet in our flat.”

    This is exactly how I used to be when we lived in a house with one toilet. It would get to the stage where as soon as someone went for a bath you could guarantee I’d need the loo- actually physically need the loo, not just psychologically (though that obviously played its part). I decided in the end that if it came to it and I had to shit behind a bush in the garden then so be it. I know you live in a flat so that’s not an option, but I’m sure you have a spare bucket or washing up bowl! The point is that once I started taking the embarrassment/pressure off myself, knowing I had an alternative if I absolutely needed it, and that it wouldn’t matter in the grand scheme of things even if I shit myself, I didn’t feel such an instant need & constant worry about needing the loo if someone was occupying it.

    “It’s difficult not to start panicking about the future and wondering if you’ll ever be free from this.”

    Yup. This thought goes through my mind every single day. All we can do is plough on and hope that the old adage “nothing ever stays the same” will apply to our lives & maybe these ebbs & flows, peaks & troughs, are just what we have to accept our lives are going to be like. I’m bad for comparing myself to others. How do these singers/actors get up at stupid o clock every morning, perform all day, have a social life & family, go to awards shows, and not feel completely sick/tired/collapsing/weak/mentally unstable/nauseous/gut explosions etc. etc. Why can some people live a normal life & I can’t?

    “This is why I keep so busy all the time, why I’ve always got multiple activities on the go and I don’t stop, it’s why I always have the TV on, multiple social media accounts open, my phone next to me and heaps of colouring books started, because I have to move from one activity to another, to another, because otherwise my thoughts catch up with me and I just can’t let them. I can’t keep wondering if this is it because it leads me to really dark places, really quickly.”

    So a while back I was conscious that I’m on my phone A LOT, and if not that then watching TV, or colouring, or on the computer, or reading, or ANYTHING. I know how it looks to others. “God you’re never off that phone” “Why are you always sat colouring, so lazy” etc. I talked to Jack about it as I didn’t want that to be how he saw me (it wasn’t, I just felt that way). I explained to him that I need to keep my mind occupied CONSTANTLY, with literally anything that will hold my attention enough to stop the continual stream of thoughts developing into full-on depressive/anxious episodes. When I have a panic attack, I feel like my bubble has burst and I’m completely in reality in that moment, which scares me to death. The rest of the time I’m in this constant state of distraction so that I can get through the day.

    “My head feels so full, like it’s about to explode.”

    I feel like this pretty much 100% of the time. Sometimes I can’t have anything noisy on, I can’t bear to sit near conversations or anything that further adds to/exacerbates the ginormous pile of crap mulching around my brain on a constant basis.

    I can’t cope with any pressure or demands because it just reminds me that I “have” to do things and the voice in my head screams that I can’t, that I can’t cope and then makes damn sure that I won’t be well enough to even try.

    Oh yes. I often describe my anxiety as “someone else but still within me”, as if a part of me is dead set against me having any kind of life or happiness. I feel like this someone at absolutely hate me and is able to overpower & put a stop to anything I wish I could do. The pressure of “having to do” something is only second to feeling that you *should* do something. Knowing you *should* but can’t makes not being able to 1,000,000 times worse, because you will look/sound/seem stupid/weak/not trying hard enough/annoying to everyone else. Any by the time you’ve got to that stage there’s no chance of being able to do it, because this “other someone” has convinced you that you definitely can’t and because you can’t you’re a worthless failure.

    “…just keeping swimming, keeping my head above the surface and not falling into the abyss.”

    How I feel in my normal daily life. My meds keep my head above water- just. That’s why I was so worried when I started feeling so awful again because I thought I had it under some semblance of control, or at least I knew what to expect of my life & I could plan accordingly. I’m terrified one day the meds will stop working, or I’ll need a higher dose until there is no higher dose, or the doctor will decide I’ve been on them long enough & it’s time to come off them. I know that then, I’ll sink & drown.

    Anyway all this was just to say that yet again, I completely understand how you’re feeling & where you’re coming from, and that if you ever need to chat/blow off steam/rage about the fucked up, unfair nature of this bastard we live with- just message me or we can Skype. I’m here for you xx

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  3. I’m so sorry you’re having such a rough time, Lucy. I can’t offer much by way of advice, and I don’t know if you particularly want any either, but seeing what you said about deciding what to eat being a struggle, I just wanted to offer something that helps me when I’m having an anxious, indecisive kind of time of it… if you google ‘wheeldecide’ you’ll find a site where you can plug in a bunch of choices and it makes a Wheel of Fortune type setup for you. So you could put in, say “ham sandwich, order pizza, cake” or whatever and it’ll spin for a bit and spit you out an answer. Even if all it does is make you realise that although it’s landed on pizza, you don’t fancy it, it can be helpful – at least for me – to take the decision off yourself and leave it to fate or whatever. Then you can’t go worrying about whether you’re making the ‘wrong’ decision (because anxiety makes no sense) and you have an answer!

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    1. Bless you, thanks so much for taking the time to comment and that’s a great idea, I’m not sure how much it’ll help me with food choices as we cook from scratch and I really struggle to even know what to do with ingredients when I’m like this but it could definitely help with other choices so thank you very much! Luckily, today and tomorrow my dinner is already decided and it’s stuff I really like so I’ve just got to actually make it. I’ve not eaten much today so I’m looking forward to dinner! xxx

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