So on the 18th of March I was struggling to deal with the pain I was in. I made the first step towards something that I had been thinking about doing for a long time: writing The Pain Diaries. This is a day-by-day summary of my pain and emotions. There are a lot of lessons I have learnt in here but I am mostly trying to share exactly how I feel everyday having to live in pain. There is some real deep shit in here! Also there is swearing. Take from it what you will just know that throughout all of this I am living as much of a healthy and happy life as I can and I would like to thank all of the people that make it so. Enjoy!
I’m listening to a remix of “Kids with Guns” by the Gorrilaz. I’m drifting in and out of focus as a cocktail of pain and accompanying fatigue get the better of me but the lyrics “turning us into monsters” is ringing clear in my head. Fuck you pain, turning me into a monster.
I don’t really know why I’m writing this. It might be to make myself feel better, maybe to help people, or it might be as an apology to those that know what is wrong with me and care for me. It could also be as a procrastination against the pile of teacher-work I have (un/fortunately my illness doesn’t excuse me from trying to live a normal life, work, bills, food, proper adult bollocks). It’s probably all those things really.
As someone that lives in pain it’s not uncommon for my mood to change quite rapidly. Frustration, fatigue, being a West Ham fan…all things that cause this to happen and it is the people that actually know me that have to deal with me when I’m being angry, sad or just generally bathing in my pool of self-pity. My girlfriend is a saint. She puts up with all of it and still wants cuddles when we get into bed at the end of the day. We met before I had chronic pain and I was probably a lot more fun to be around.
When I don’t have to work on a Sunday it’s easily my favourite day. I spend the day with my partner and if pain comes it does so where I feel safe, with someone I feel safe with, and without any expectations for me to try and fight it. I didn’t really start living well until I started accepting the pain was there and that fighting it only causes more suffering. This is much easier said than done and some days it does feel like a fight when I have to get up and continue the day like everyone else, hear about all of their troubles and try and empathise with them.
It’s not fair to think that I am the only person with problems, I know people who are a lot worse off than me, however some people really do complain about anything and everything without a second thought about what is going on in other people’s lives. Everyone is a wanker. That was my old motto. It landed me in a lot of trouble with an ex who couldn’t see past me only referring to her as a wanker. My girlfriend understands this even though she’s the reason that I changed my motto, because believe it or not she’s the exception to the rule. My new one is: everyone wants to be happy. Maybe I’ll explain that more in a later entry. Just think about it until then. Everyone wants to be happy.
I think the point I’m trying to make here is be with people that make you happy, that take away your pain and make you want to be well. Even though sometimes it’s hard to do, when I’m around her I want to be the best person I can be. Not changed and warped by pain, but a version of me that is relaxed and accepts that amongst all this shit there is good and there is happiness. You can’t polish a turd, but you can roll it in glitter.
Today was mostly shit. The pain can sometimes completely dissociate me from my work which isn’t exactly ideal as a teacher but the kids don’t seem to notice. To be honest most of my colleagues don’t notice either. I feel like I’m floating above myself and like the day is just kind of drifting by; it’s not dissimilar to the Tramadol highs I used to experience, maybe it’s an association thing I have when I’m back in a lot of pain? Who knows? I haven’t used Tramadol for well over a year, not since the whole counselling and Buddhism shindig but that’s a story for another time.
There are a few people that can get me through the day and help me in ways that not even they realise. To the few people that actually know what is wrong with me, I put a lot of trust. Today one of them people got me through the day without even realising she had. In fact I helped her with organising a class and marking work so maybe I’m the hero of the day… either way she didn’t bat an eyelid in inviting me into her class and having me hang around. Sometimes the help I need is as simple as that. Not a new ankle. Not a shit-ton of pain meds. Just support and someone to make you feel normal.
Being in pain is shit but as soon as you start to think that you are alone or special in any sort of negative way it becomes very difficult to get through anything. The truth is we are all broken, whether we are in pain, have illness that effect the way we live or have had to deal with things such as mental illness or grievances, everyone has been through tough times. Those that dwell on these tough times, relive them every day and live as if the worst is now will always struggle, the rest live happy, “normal” lives…what ever that means.
The Dali Lama has spoken about how seeing yourself as different, in whatever capacity, better than or worse than others, will isolate you and force you to become a prisoner in your own mind. As someone who suffers everyday, feeling normal and not disconnected from other people is something that helps me massively. I don’t want to feel isolated. I don’t want to seem different. So I don’t let myself believe that I am better or worse than others.
I spoke with a friend today about her issues. Listening to her problems I found it hard to comprehend what she was going through but at the same time she thought my problems were worse that hers. It wasn’t a competition but it probably could have been. What we both got out of the conversation was something that plagues many of the people around me that find out about my pain: you can’t and won’t be able to understand someone else’s pain. And that’s fine. No matter how similar the problem, no one can ever feel what I’m going through. That realisation came to my mum recently and my girlfriend started to understand it after my counselling.
I don’t really want sympathy or empathy, the best thing that anyone can say to be when I tell them my issues is “okay, let me know if you need me”. If someone comes to you with an issue, I plead you to say that. Don’t apologise (unless it’s your fault of course) and definitely don’t start pointing out what they have that is good, sometimes it may seem like you’re putting their problem into perspective but actually it’s just suppressing the problem that needs to be considered head on. I filled my life with distractions and denial for years, constantly thinking that it could be worse and I should be grateful for what I have. It made me feel weak. It made me more insecure about not being able to deal with my problem the way I thought I should and this led to anxiety. Don’t do it.
I’m aware that this is mainly the ramblings of a mad man but amongst all the bollocks is how I am dealing with my issues. One day at a time.
Sometimes I think things can be unfair. I’m the healthiest person I know, my diet is near immaculate, I exercise regularly and I don’t smoke or drink alcohol (which is apparently a big deal for a Murphy). I’m 5 ft 10 (5ft 11 with my hair), weigh 10 stone and am a black belt in jujitsu. It doesn’t seem right that I’m tired all of the time, struggle getting out of bed and regularly need to take timeout of the day to myself to stop chronic pain from getting the better of me.
Your physical health is something that too many people take for granted. Rising obesity rates and the type 2 diabetes pandemic are a disgrace to us as a race because if people realised how blissful their bodies really were, these wouldn’t be an issue. I mean, I love garlic bread as much as the next person and I would eat cake and chocolate all day everyday if I could but I struggle waking up as it is! The reason I live such a healthy lifestyle is because I would like to keep hold of every little ounce of health I have left and if any other changes to that were self-inflicted then I would beat myself up every day.
I can sometimes put too much pressure on myself when it comes to exercise. Last May I ran 27 miles cross-country. I would not recommend it to anyone. I’ve ran half marathons, I do exercise DVDs and I both train and teach self-defence. I know my limitations, though my condition is mainly mental, yet this still bothers me. I get upset and frustrated when I can’t do certain exercises and it takes me a little while to come around to the fact that doing any exercise at all is a big achievement, especially after teaching all day with chronic pain. I think this may be from have a background in Martial Arts. I think of myself as a warrior, the Miyamoto Musashi of chronic pain. I think that I should have the mentality and physicality to do anything but the hard truth is I don’t. But that’s okay.
I was exercising earlier and I didn’t think I would get through my workout. As I felt myself deflate I thought of this. I take my TENS machine off when I get in from work and put my shorts and trainers on. I try and do up to an hour of exercise if I’m up to it and there I was, with 18 minutes left as saggy balloon laying on the floor of my living room. I had already done so much hard work. “Fuck you, pain” I said out loud and carried on exercise. I didn’t beat pain. It’s not a battle. It’s certainly not a competition. It’s just sometime I live with. Sometimes I fell like I’m Pain’s bitch, but sometimes I can make Pain my bitch.
The biggest hurdle I face everyday is waking up and getting out of bed. It would be so much easier to lay there and let the pain consume me but I don’t. Sometimes I need to remember to tell myself that I’ve already accomplished so much just by getting up. The rest of the day is easy compared to that first step.
Today was my final day at the school I had been working at. The impact I had left on many people there was really apparent when I was called up in assembly. It was a lovely reminder of how living my life selflessly and not letting my pain dominate my personality can have a positive effect on others. My mentor at the school commented on how it had been really nice having someone around who was so happy and positive, those with the most pain tend to smile the most.
I wear a TENS machine under my suit, the unit itself looks like an MP3 player and the wire runs down my trouser leg and attaches to my ankle. It is very discrete. I’m not trying to hide my issues because I’m embarrassed, I just don’t think it concerns the majority of people in my life. Sometimes it is important for people to know what is wrong with me but not to the full extent and that’s how I like it. I don’t want people worrying about me, worry is an unnecessary state of mind. I just smile and get on with each day, some are much more difficult that others but I always get to the end of them. When you have a day like I had today you smile because you know that you are doing the right thing. For everyone around you. Sometimes making others happy is the only way to make yourself happy.
I ordered another Buddha pendant which also arrived today. I had worn my previous one everyday for a year and a half. When I need reminding that I can do this whole “life” business I rub his little belly and try to change my state of mind to something more positive. My previous one I had given away to someone who may have needed it more than me. I’ve come a long way since I was diagnosed with chronic pain although sometimes it doesn’t feel like it, if I can ever help people who have had to face similar things I do and in the moment giving away my Buddha, who had so much sentimental meaning to me, seemed like the right thing to do.
With no responsibility, my body will overwhelm itself with pain. Bastarding thing. I finally built up the strength to get out of bed at 2.30 pm by which point my day had already been ruined. I spent most of the morning drifting in and out of anxiety, reacting to sounds coming from the building work going on next door. All of my major panic attacks have been initiated by sound. My girlfriend can’t blow dry her hair in the bedroom because the noise sets them off. When I wasn’t curled up waiting for a full blown anxiety attack (which surprisingly never came) my leg was going into spasm with pain. My original plan to wake up, exercise and finish off university work wasn’t happening.
I ate half a box of chocolates. Comfort food can act a bit like a hug when you feeling shit and are alone. Maybe I should’ve messaged someone to come round but in that state I both fear and crave companionship. It’s not great. When I eventually did get up I was physically and emotionally drained. Whether this was due to finishing a term which I had battled through or from the pain I’m not sure but it does seem to be a common thing that every now and then I do crash. I’m in two minds as to whether it is actually a good thing or not, but I would be inclined to probably say not. I know that from day to day I generally push myself to do things that I shouldn’t but if I fully listened to my body I wouldn’t leave the house at all. This is just giving my body what it wants at a time that suits me.
It feels shit though. I can’t bring myself to do anything but feel sorry for myself. The emotional drain a day like that puts on leaves me feeling tired for a few days after as well. We drove to my partners parents house for the weekend following this. She suggested not going but we had already made plans. Sometimes I have to convince myself to go out when every part of me want to crawl back into bed and stay there. Forever.
After yesterday, trying to act normal in front of my partners friends and family is a struggle. I do it anyway because I love her. But fuck me am I tired. I did need to take myself away from everyone and that is where I am now, writing this in the confides of her room.
Yesterday, with everything being the way it was, I forgot to send my mum a mother’s day card. I feel terrible. My sister is being a star and trying to sort something out for me now. I’m currently in Southampton, but we live in Brighton and my family is in Essex. Hence why this situation is awkward. We will be moving to Essex in the summer because I know that I will be able to get the support I need there.
I often neglect things going on at home (Essex). It’s too easy to get caught up in my own shit and my own problems and I just seem to miss things. Cards don’t get sent, calls don’t get made, and all of my somewhat legitimate excuses are nowhere to be found because I’m miles away, locked inside my own head, just me and my pain.
Mother’s Day. My sister gave my mum her card and flowers but she knew that I hadn’t been organised enough to arrange anything. She doesn’t know that I couldn’t leave the house on Friday to sort it out. I feel sick for letting down the one person who supported me the most when everything started.
18 months I waited for surgery, I was 17, I took pain killers to get high, they didn’t touch the pain in my ankle but the doctors kept on giving them to me, all of my friends gave up on me because I wasn’t at school and couldn’t go out but one person who knew all of my problems and suffered through it as I did was my mum. That 18 months is blur, a skid-mark, a missing piece to puzzle yet I still remember my mum crying. In my room. In the conservatory. In the car outside appointments. Even though she doesn’t understand my pain she feels it in every way that I do and more.
She is every reason that I am still here today and for everything she has done when I was at my worst I can not thank her enough. For every problem that I have now I know that if I turn to her everything will be okay, no matter how much it hurts her. She is braver and stronger than I will ever be and I do not believe that me going through this is worse than her sitting back and watching. What breaks my heart is how helpless she feels despite that fact that she has made all of and continues to make all of the difference. I need to smile and get through things. Just knowing she’s there makes me smile. I need her more than she thinks and that’s the reason I’ll move back to Essex soon.
I know I’ve let her down today but it’s nothing that a walk to the Homemade Bakery in Old Leigh can’t fix. Normally she goes for 2 cakes but maybe when I’m home in a couple of weeks I’ll treat her to 3…or 2 and an oat biscuit because they don’t count. They’re biscuits. Not cakes.
Today I managed to get out of bed and leave the house. Ha, fuck you, Friday you just got out done by Monday. It was difficult but and I didn’t get any work done but I did go down to meet the other half for lunch. The sun was out and we just sat there people watching. My foot was quite bad but my TENS machine was buzzing away.
I find a lot of comfort in watching the world go by. The reason I don’t talk a lot about my problems with others is that I don’t want them to tiptoe around me. I don’t want people to change because of my issues. I enjoy seeing happiness in others and I always feel better when I see that the world doesn’t stop turning for me. It makes me want to join in. I don’t want to miss out.
I got rid of my smart phone because I, like others, spent too much time looking at a screen. There’s an amazing world out there, people will make you smile where ever you go. Even better than this you can make other people smile where ever you go, help others if it looks like they need it, their relief is your joy. If you’re stuck to a screen you’ll miss all of these opportunities. Little moments can make your life so much better.
Tuesday was going really well. As far as days in by myself go, this was one of my better days. I had just been getting on with it. I’d done a lot more work than usual and a workout then about an hour before going to bed my ankle got the better of me. The pain started building and I just felt myself emotionally shutting down. I was cramping up and no matter how tired I was I couldn’t fall asleep. I didn’t keep my girlfriend up though which was good, like most nights she was out like a light, grunting and twitching. I love her.
After about an hour and half I got to sleep and dreamt again of being in pain. That’s what’s really shit. Dreaming you’re in pain. For a long time sleep was such an escape. Not on Tramadol… you haven’t had a real nightmare until you’ve had one on Tramadol, but that’s a whole other story! I can’t remember exactly when I started dreaming that I was in pain but it’s normally a big indication that the next day will be difficult. I walked with a cane for a long time and in my dreams that bit usually comes out first. I hobble around, dependent on the cane, try and sleep wherever I am and am even more incapable of life in the dream than I am in normal life. When I wake up it’s as if I haven’t been to sleep at all, just as exhausting as living the dream itself.
So after the crappy night before I was inevitably in pain. Mentally I felt quite strong. Don’t ever underestimate the power of having dependencies and friends to get you through the day. I’d planned to meet a friend at the library so I wired myself up to the trusty TENS, got on my motorbike and left. Emotionally I felt strong, I was able to hold my own and smile through a lot. I felt comfortable around my friend, she knows a lot about my problems and understands them well but she understood when enough was enough for me and we did end up leaving earlier than originally planned.
I can work at levels of pain that most can not, sometimes it doesn’t even phase me. It may not always sound like it from what I have been writing but a lot of the time you’d never be able to tell anything was wrong with me. Sometimes that is a problem in itself but it’s definitely not something to take for granted. Unfortunately I had a serious case of pain brain. I’ve heard it described in various ways, some people say it’s like a fog descending, your logical thinking goes out of the window and you just act on impulse. It certainly wasn’t the right mindset to be writing essays so I felt it was best to go home and watch films instead. Sometimes it’s more important to look after yourself in what ever way you know best. For me that was putting down work and organising my mum to come and visit me on Friday.
My friend pointed out to me that Complex Regional Pain Syndrome nearly spells CRAPS. If we add the location of my pain it becomes Complex Regional Ankle Pain Syndrome or even Chronic Right Ankle Pain Syndrome. I have the CRAPS. If you can’t laugh at your own condition what can you laugh at!?
I was supposed to go to London today but I had to cancel. It’s a big part of my life cancelling on people, some would even be a hobby. I don’t tend to say I’ll do something unless I really want to do it because I know that if I’m having a bad day the last thing I want to do is go out. Especially when I can sit in with my girlfriend and my tortoise, where I’m happiest. I don’t normally feel too bad about cancelling, like I said yesterday it’s more important to look after yourself. It’s a big reason why I don’t have many close friends, especially not a big group. I lost that when I first got ill and it felt shit. Why would I want to commit myself to that again?
I like finding people I can rely on and that will actually understand what is going on with me and it turns out they are in pretty short supply. Sometimes I think I should open up to more people but spreading your pain around is sometimes like them weird friendship cakes that got passed around in primary school, it doesn’t get smaller, everyone just gets their own bit that seems to grow. It’s like sneezing on people. By giving someone else my cold doesn’t mean that mine will go away. Even though they don’t feel the physical pain it’s often upsetting to think about for people who are my friends and I don’t really want to be putting that on people who will struggle to understand it properly.
Despite being a massive Cadbury’s Flake, I did manage to get some work done and go for a run. Proud of me. I also did a lot of procrastinating by looking into therapy pets. I love the idea of a therapy pet and the other half is even more excited about that prospect than I am. As much as I love Frank the tortoise, he isn’t exactly the mascot for love and affection when I’m in pain. He stomps around causing a scene, eating some dandelions, but as far as dampening the pain and making me feel less anxious when I’m alone he isn’t exactly the best. A therapy pet is one of the few treatments I haven’t tried and I’ve been getting pretty desperate for some kind of aid recently. It’s definitely a much bigger step than buying a silver Buddha pendant to wear but if it has the potential to work it’s surely worth a try.
I’ve decided to go back to the doctors next week and see what they can suggest. Maybe they’ll even recommend the whole pet idea. This is a big step for me and I think a lot of people will be relieved that I’m going. Emotionally and physically I really struggle during half-terms and holidays. Despite still having a shit-ton of work my pain overrides my ability to do anything else and frankly I can’t carry on living like this every time I have a (well needed) break from work. It’s not healthy. I get to see my mum tomorrow though. I haven’t seen her in over a month. Tomorrow will be a good day.
Having my mum around made a massive difference. I still don’t feel entirely comfortable explaining how bad exactly everything has been because I don’t want to upset her but at the same time she does understand a lot and I think she worries either way. She’s my mum, she’ll figure it out whether I tell her or not. That’s what mums do. They just know things.
My parents are very different to most. Since I left, and definitely since my sister left, they have become so relaxed, so care free, and so funny it really is nice when I get to see them. Two people that feel so comfortable around each other and love each other so much, it’s almost unnatural. Their relationship is what I’ve been looking for and I’m almost certain I have with my girlfriend. To understand someone else’s needs, what makes them angry, happy, sad and be able to accommodate for them when they are feeling that way. It’s what they have and it’s what my one has learnt since we’ve been together… well at least since my counselling and since I actually opened up to her!
My life can seem very dark and moody at times so I like nothing more than to annoy my girlfriend when I’m feeling up to it. I poke her face, gently blow on her when she’s trying to sleep, sit on her when she feels sad (there’s nothing romantic or sexual about that, I’ll literally sit on her, smiling until she stops crying), we also have this fun game where she tries to hold my hand and I won’t let her. I’m a bit of a pain in the arse to be with, even without the illness. She knows that I would never say or do anything that would hurt her. At the end of the day I’ll always be there for her cooking dinner when she gets in from work, ready to put some music on so we can have a little dance in the kitchen.
That’s just like my parents, they say things to each other that are purely hilarious and borderline unacceptable in most relationships but they don’t really mean it. They just have fun and are always laughing. I aim to enjoy life the same way my mu does. “Fuck off, I always have to touch your pants” she laughed down the phone to my dad as he told her off for leaving a pair of her pants in the bathroom. Cakes, chocolate, walking, farts. It’s the simple things in life that you can really enjoy, that’s what she teaches me. The pain can feel secondary if you enjoy all of the little things. It can be hard. Some days you won’t find happiness in anything. But if you can find someone or something to make you smile hold onto it. It can change everything.
We went over to the RSPCA centre today to look at cats to rescue and I came to a realisation. I don’t actually like cats. The other day the GF said “I can tell you’ve been really bad lately because you’re thinking about getting cat”. The Ragdoll cats we have been looking into have a much different temperament to normal cats and are much nicer looking. I think having one around will massively help me out. It will stop me feeling lonely and anxious when I’m by myself and will be a reason to get out of bed to care for it. Sometimes you just need a cuddle.
The pain I have been in the last few days hasn’t gone but I’m dealing with it a lot better than I was. One day at a time, ehy! Emotion can play such a massive part in dealing with your pain but controlling your emotion and your pain does become a bit of a balancing act. Sometime I got into an autopilot phase, and I will feel it activate like the blowup dolls in” Airplane!”. Completely emotionless and just going through the motions. Breathing, walking, talking, just so disconnected from my emotions because I’m also trying to disconnect from the pain.
The worrying thing is that this isn’t a bad place to be. It’s like sitting on a sofa in a plain white room. Things could definitely be better and there could be a lot more going on but hey, at least the room isn’t full of wasps, or chavs. I like my white room. I couldn’t stay in it all the time because I don’t really function properly there but from time to time when I do go in there it does seem quite nice.
We walked to Ditchling Beacon today. It only took an hour longer than it should’ve because SOMEONE didn’t look at the map properly. You wouldn’t believe she has a degree in Geography, but apparently that means she can do a whole host of impressive things apart from reading a map. We were out walking for 3 hours and it definitely didn’t make my pain any worse. In that sense I am lucky. I know many people who have conditions that don’t allow them to do this. I have to be bigger than my pain though, bigger than my illness because it doesn’t have a name, set of limitations, and list of treatments likes other illnesses. Sometimes it feels like it’s all me. Like I should be able to cope because there is not medical literature that says I shouldn’t be able to. That’s not true though. I’m allowed to be ill. We all are. It’s whether you let it stop you or not that determines how your life will be.
So I’m stood at the highest point in the South Downs. I feel like I’ve accomplished something. Every day this week I have struggled getting out of bed, struggled to motivate myself to exercise, struggled to see when things can improve and now I’m stood overlooking the whole of Brighton and Hove. Doing things, achieving things can make you feel big. Yeah I felt completely spent when I got back home and spent the evening on the sofa playing Need for Speed: Underground 2 on the PS2 but having gone out that morning and been bigger than my pain made me feel more human. Be bigger than your pain. Bigger.
I had my appointment today. The doctor actually commended my attitude for looking for alternative pain management strategies other than pain medication. I can’t function properly on pain meds. I found no difference when using paracetamol, NSAIDs or tri-cyclic antidepressants and opioids such as codeine and Tramadol changed me. I could not function on them. They led to horrific addictions that took weeks to come off of and they didn’t really alleviate any pain. I can’t remember most of a large part of my life due to Tramadol but I remember the feeling. Like I’m floating. Like the pain was on the end of a limb that was a mile long. Out of reach and out of mind. I loved it.
Even now I get excited about the thought of that. Feeling so dissociated from life and from pain. I didn’t care about anything. Not a fucking thing. Not about my family, not about my friends (most of which I lost at this phase), not about my life. I hate it. I wish it was never a part of my life. I wish that because sometimes the thought of returning to that seems a lot easier than what I have to go through now.
I would never go back to it though. I often joke about it but truthfully it was some of the hardest times I have ever been through, on me and the people around me. I have too much going on now, too many good things, wonderful people, wonderful job, wonderful tortoise. I don’t do it for me now, I do it for all of them. I think I’ve already said it before but my happiness comes through making other people happy. There is nothing more powerful than that and if you can make other people happy then carry on. You may just be the reason why others are still carrying on.
I think I was saying something about the doctors…oh yeah, I have these new plasters “Hey doc I feel broken”, “Hey guy, try these plasters”, “Cheers doc”. They are local anaesthetic plasters; might as well try every type of pain relief I suppose! He also suggested that I undergo more counselling and consult a pain clinic about trying to fit a spinal stimulation device when I return to Essex. So, there we go, the future holds more opportunities for me to live well with this, it’s just a waiting game. It’s always a waiting game. The worst kind of game.
The beauty and optimism you can find in a sunny day always amazes me. This goes back to looking at the little things. Savour the days that you feel good, whether it be emotionally or physically, you’ll need them for when you’re feeling shit again.
The fatigue of feeling ill for so long can become a real burden. Considering that I haven’t had to go to work for a week and a half you really wouldn’t notice. I think spending too much time by myself means I get to think too much about myself and that’s what really makes me tired. On a normal day, I have to think about so much more and get to focus on so many people that I hardly have time to notice my pain. That is more like a blissful fatigue. This is very much the opposite of that.
When I’m feeling up to it I can run marathons (literally ran a marathon) then other days it’s like I can make the journey from the bed to the sofa. That’s what I struggle with. I know my potential but fuck, I can’t always reach it.
Before I got ill I had so much ambition. I always wanted to meet or surpass the expectations put on me. I was getting the grades to go to med school and be a doctor, had started working towards my black belt and I had a large group of friends. Then bang. That all changed, walking with a crutch, missing lessons and my friends all fucked off and grew up without me.
It’s taken time but I now know what I want and it’s totally different from my previous aspirations. There is still so much that makes me happy and I want that. A family, more tortoises, a job I look forward to doing every day. Not money or success.
The previous expectations that pushed me are still there and I do sometimes let that get me down but the change in my attitude is massively different to what it was. I know that I must put myself first, not others or my work, me. Poor broken me. Poor dramatic me. But since I have been doing that I have improved massively.
Shit. Another awful day. I can’t wait to get back to work or get back to Essex. I need more people around me to support me and to pick me up. That is one thing that I would advise to anyone, if there are people you can trust make sure you let them know when you need them. All I needed today was someone else to be sat next me instead I slept the day away. Basically, I fucked up.
I went to meet the other half after work but that was a real struggle. We didn’t talk much on the way home because I didn’t feel comfortable with all the other people around but I’m glad I did go and meet her because sure as hell it reminded me that the world was still turning even though to me it felt like it had stopped. Also, she was going to get a new piercing and I wanted to make sure she was okay. She is more important to me than I am to me so she always comes first. The guy that did her piercing had a lip disc. I may have chronic pain but at least I don’t have a lip disc.
I was rudely awoken from my light and broken slumber this morning by the builders next door to move my motorbike. I stayed out of bed when I got back in and started working instead. This was definitely the right move. This is the kind of thing that I have been talking about but to a lesser extent. I need that initial push to get me to do things. A catalyst if you will.
I really struggle doing things I don’t see any real point in doing. This is a new part of my personality. Maybe I’m just turning old and cynical at 23 or maybe it’s the pain. Writing a 3000-word essay for university that is only pass or fail is certainly not high priority in my eyes, hence my struggle to get it done. I will do all of the lesson planning, extra teaching or self-defence lessons in the world because I can really see their worth. The same goes for spending hours exercising or cooking a really tasty and healthy meal (two words not often seen together there).
I’ve heard an analogy before about having a limited amount of life in you. Because I can’t really be arsed to look up the person or exact quote lets change it up a bit: Normal people can just get up and pretty much do what they like for free. Being ill is like have a limited amount of change in your pocket and having to pay for everything you do. Waking up and getting out of bed costs £1. Morning poo: 50p. Making breakfast: 50p. Going to work: £2.50 (You get the idea…). When you run out of change for the day you have to stop whereas normal people carry on going. You question the decisions you make a lot more than other people because going to the pub that evening may go over your budget. If you go into debt one of two things will happen: the rest of your day will be way too much and you’ll really struggle to cope or you’ll be in debt and that will come out of the following day. Sometimes it’s worth going into debt to feel good and do something you love but you need to spend that change carefully.
Having the support of my partner for the whole day on a weekend is massive. The difference in my mood and ability to deal with the pain is incredible. That and also the fact we like to go and get a cake from the bakers.
If you don’t have someone you can heavily rely on like that, whether they are a family member, partner or friend I would strongly suggest opening up to people to see if anyone can offer you that kind of support. Sometimes it’s as little as sitting with you or making you a tea, but knowing that people care about you can help you in so many ways.
We walked to Woodingdean today, an 8 mile round trip, to visit a friend and her dogs. There we sat in sun. I had my lidocaine plasters on today as the TENs machine is a little less discrete when I’m wearing shorts. I felt an ounce of normality come back to me. There wasn’t anything restricting me or anything I couldn’t do. These are the days you look forward to.
I dream of fishing a lot. It’s strange that my mind always goes to that. Two nights ago I was fishing only using a line, no rod, and last night I was teaching my partner how to fish. We caught a tortoise. Not a turtle, and actual tortoise. When I am in pain, I dream that I am in pain and the whole thing leaves me just as tired as when I went to bed, I also have a lot of nightmares.
Feeling tired seems to be a massive part of my life and I really wish it wasn’t. I’m tired of feeling tired. The fucking irony. One thing I do find though is that it doesn’t make me any more tired to do some exercise. It’s definitely hard for me to commit to doing it but when I actually do it I definitely feel better. That surprises a lot of people and one piece of advice I can give is don’t use illness as an excuse to do things you can do. My doctor originally told me that I should never do martial arts or running again because they “might not be good for my ankle”. I got my black belt and ran a marathon and neither of these things made my pain any worse but did massive things for my self-esteem and emotion.
I went to see my new mentor for my new school today. I told him about my problems and how they may affect my work. People don’t often know how to take it but it’s nice to experience the compassion that some people give. You can often spot the good people in this world by telling them your problems, some will immediately try and help, regardless of their experience and that can make you smile. Knowing that people do care can make a massive difference and it definitely made me feel a lot more supported going into my next placement.
A mentor at my previous school literally did not care. When I told her, on the advice of my personal tutor, she looked at me as if that information was inconveniencing her. Immediately I felt isolated. I felt uncomfortable around her and like I couldn’t be ill. That is the risk of telling people about being ill, it doesn’t always help.
I finished doing up a piece of shit bike that I accidentally bought. That bike was more of a mess than my life but now it’s back in full working condition! That’s your inspiration right there. You might feel like a broken bike but with a little TLC and 5 hours of pain-in-the-arse handy work you can once again be roadworthy!
My partner has now finished work for Easter which has immediately made me feel better. Knowing that I’m not going to be alone during the days means that my mood will now affect her too, therefore I’ll try to be happier. We don’t do it for us, we do it for others, and that makes it better for us.
We travelled back to Essex today. Being surrounded by people who can support me and make me feel comfortable is exactly what I need. We went to see my great aunt and my nan and grandad when we got back. Since my great uncle died, my great aunt has become totally incapable of looking after herself and my mum and grandad now have a massive part in her life, essentially as careers. There are of course other people that could do this instead of them but the selflessness of their actions is humbling. I see the tremendous stress that is placed on both of them as they run around and reschedule their lives to cater for her.
This makes me think about all of the people that take the time to look after me in any capacity. Anyone who has ever taken the time to do things for me when I have been too ill, from physically looking after me to simply being understanding of the whole process, I thank you. Being ill can cause so much distress to the people around us, we need to be mindful of this and remember to say thank you or to buy people flowers.
Being constantly ill doesn’t excuse you for getting other illnesses…
The day started strong, we went for a 3-hour bike ride through the Hadleigh Downs and into Southend. I started feeling ill in the afternoon and just after cancelling a night at the pub with friends I started being sick. 8 hours later I stopped being sick…
So, as well as vomiting, other symptoms can include headaches, fever, stomach cramps and joint pain. I was lucky enough to have all of these! The joint pain was especially bad in my ankle and I actually had to wear my TENs machine while being sick. Bad times.
Ill but with the rest of my family.
Ill but back in Brighton, now eating a bit of food.
Less ill but back to work…
After 3 weeks of feeling like shit and feeling sorry for myself at home I’m finally back to work. TENs machine all wired up. The day was long and hard as they always are but I had more energy and will power to do things than I’ve had for the entire holidays. I came home and went for a cycle and that evening I was normal. It was great.
Like being kicked off of an all mighty perch, today I felt awful. A mix of recovering from sickness and my pain left me having to take my first day off since starting work. It felt shit. It made me feel totally incapable. I was totally drained and slept much longer than I usually do. I’m due counselling and more pain clinic appointments when I get back to Essex and they really can not come soon enough.
I started thinking about my future. How can I work if this is my life? Sometimes I try and re-plan everything, find an easier route, more accommodating job, more accommodating lifestyle. That would be letting my pain get. The better of me and I really don’t want to do that but some days it’s really hard to see past it. Really hard.
I woke up again in a lot of pain but determined not to let people down again so I went into work.
I constantly tell myself to be bigger than my pain, more than my illness. The frequency to which I tell myself this makes me think that a lot of the time I’m not bigger than my pain.
Living with any type of illness is hard. Don’t let anyone make you think that is isn’t or that you should be dealing with your problems better. Sometimes I’m on top of the world but sometimes I’m going through hell. I can struggle to see the light at the end of the tunnel and I start re planning my life as if everyday I were to experience me at my worst.
This is now normal.
“Fuck, I wish I was normal” I say to myself over and over.
Be bigger than your pain.
Your illness can define you and right now it is defining me. I think I’m close to being the worst I’ve been since my pain started over 3 years ago. Fuck I wish I was normal.
Be bigger than your pain.
Most days I get up and get on with it. I am bigger than my pain. I’m allowed to be ill. I am ill. That’s hard to admit. It’s hard to talk about. But I am ill. Ill. Fucking ill. Every-fucking-day. The world keeps on turning even though I’m ill. If I stop nothing else does. That’s why I need to carry on. Carry on going. Carry on being bigger than my pain. It is hard.
Things will get better eventually and I know that but for the time-being they are bad. I carry on making the wrong decisions and be dominated by my pain and it has been going on for a length of time now where I will need a significant change to help me out of this rut. Please don’t do what I’ve done. Look after yourself better and speak to people more about your issues, no matter how small or sudden you think they are. As soon as things start getting bad take the reins of your life, your illness, your emotions and steer them the way you want them to go. You have a lot of control of your own emotions.
I’m in a lot of pain and I am not feeling bigger than it
But that’s okay, because soon I will be through this flare up, and back on top of the world. Just like last time. Just like the time before that.
Even when in a lot of pain, to be around people greatly helps me. After another long day at work, I went to the pub with the staff from my previous school. It’s great to feel appreciated, particularly when you are feeling shit.
I struggled getting out of bed to get to university. I’m struggling more and more these days and getting out of bed is the first and hardest step. I know things will get easier again soon but not knowing when is difficult. It becomes hard to decide what is the right course of action for me to take. Do I take things into my own hands and try to be proactive about my condition or do I just wait it out?
Being proactive isn’t always an option. You can make doctors’ appointments, read books, go for a run, all things that could potentially make you better but have no guarantee and can even sometimes make you worse. Expending energy like this is a great effort and with potentially no benefit it is very hard to commit to.
My problem is I like to think I know what is best for me but often I don’t. Time and time again I make the wrong decisions when dealing with my illness, it’s all part of it.
My body gave up today.
I found the end of the line. I’ve been working so hard through the illness that my body decided when enough was enough. I don’t even remember getting up. I just went through the motions. I kissed my girlfriend good bye and went to get on my motorbike. I kicked back the stand and when I put my foot down my legs gave way and I fell to the ground. I had just about enough strength to pick myself up, my girlfriend had to come and help me with the bike.
Then I broke down. I haven’t cried since I started writing this blog, since everything has been getting worse. I did today. I have been overwhelmed with fatigue and pain to the point where my body has stopped functioning. I’m too weak to carry on in the same way and this morning, that became far too apparent.
Tonight, we are travelling back to Essex where I can be better supported and start other treatments to help my current situation. I know things will get better but for now they are bad.