Anna’s blog: binning arthritis

My name is Anna and I am ready to change my life. I am going to use this blog as a way of recording my progress as I change my life. I am going to face up to the things I know I need to do and log my thoughts and feelings.

My allowable weakness is hideous spelling and grammar. Either correct it for me or deal with it please.

Basically, I’ve had arthritis since I was 16. I’m now 28. It’s a degenerative illness but as the years have gone on and I’ve had to deal with increasing physical challenges, I’ve become increasingly more aware of my own personal development. But I’ve always been stuck with a certain sadness and restraint, maybe caused by the illness or perhaps by the way the illness affects me socially. I’m having both of my hips replaced starting in the next month and would like a fresh start. I’ve been told it’ll be a new “lease of life” about a hundred times but I want something more than improved mobility. I’d like to bin the vulnerable attitude I have been living for nearly half my life.

I highly doubt that this blog is going to be an indication of what to expect in personal development with John. So far I’ve had extreme highs and lows, but I’m certain this is a reflection of my stance on spiritual growth. (I’ve realised with this process that I’m possibly a bit of a drama queen so probably enjoy these extremes!) So whatever you read here, please don’t be put off. I’ve experienced some painful realisations after the first session but none that I would go back on!

What I want to change about myself is:

I’m like to stop feeling so vulnerable or like a victim. I think this attitude is very easy to fall into when you have a disability and is further confirmed by the people around you who often feel sorry for you.

I’ve learnt over the years to make myself into a bit of a “hero” so that my purpose in life has been to inspire people. E.g; “I can do this and that despite such huge hindrances… blah blah blah”

But I’m a bit bored of this now and would like to do things because I enjoy them and they’re right for me.

I initially contacted John because my most recent relationship went down the pan in a similar way to the past 5 or however many, I can’t remember. So I really want to break the cycle that occurs in my relationships. I’m still identifying what this is. I’m sure it’s all part of the same big picture that has not much to do with me personally but is rather just shit that happens! However recognising and changing what’s happened is definately my responsibilty… otherwise I wouldn’t be here writing this blog.

So I guess what I’d like to change about myself is my relationships and maybe just my whole self! I’d like to learn about who I am and just become a happier and more contect person. There’s some superficial things too, of course…

The long term outcome I am looking for is…

A happier Rena. To be content with myself and my choices. To have the guts to achieve the things I want to achieve and to have the guts to acknowledge which aspirations of mine aren’t actually mine. To be in a happy and fulfilling relationship, and be happier in all my friendships and with my family.

My initial goals are:

• To get a clearer understanding of who I am and have happier relationships by the end of the sessions with John.

• To start working on a big project that helps people going through chronic illnesses with the emotional side of their condition by the end of next year: Because I feel I could be successful in this and that it would benefit people.

• To have a clearer direction in my life by the end of the October 2010: Because I don’t like sitting around waiting to see where life takes me!

• To be healthier and slimmer by the end of the year: Because I’d like to start respecting and looking after my body as best I can.

So, here goes…

Wednesday 22nd September 2010

I’m writing this in hindsight because I didn’t feel ready to write until now…

I had my first session the previous thursday which was a massive eye opener. I guess I was at a point of “crisis” when I contacted John as I had just broken up with my boyfriend and he’d turned frighteningly abusive (verbally). I’ve been in this situation many times before so wanted to know what I was doing to contribute to this. I guessing there’s a kind of “new client syndrome” where people realise things in the first session and very quickly think they’ve found an answer and so try to repair what they’ve done. I realised that I’ve propably been quite controlling in many of my relationships (perhaps because I feel out of control of my body physically? who knows? does it matter why?), and so my immediate reaction was to feel extremely guilty. I apologised to my partner during the week, accepting blame for the massive arguement we had. Who’s in the right? I have no idea. All I can say is that I now know it’s so important to sit with the realisations you get because you just get more and more realisations and then realisations about realisations…!

So Wednesday was my second session with John. Coming away from the session I made some gigantic life changing risks. I know it doesn’t sound like much but I forced myself to go out and do some things I’ve always been terrified of doing. Being alone is one of those things and being unprepared is another. I think compounded by my disability and the way people always treat me and tell me to be cautious, I’ve never really done much on my own, without people looking after me or without taking lots of things around with me “just incase”, such as spare  pills, spare stocking aid, spare crutches, spare bath step (!) spare tissues, spare pants….! You get the idea!? But coming away from my session with John, where I had virtually nothing with me, just a couple of books to read and write in, the clothes I was wearing, a tank of petrol and a credit card, I decided to just get on the road and go anyway! I went out for dinner on my own, which is something I’ve always been scared of doing (what will people think, kinda thinking). I’ve been waiting to go for sushi with one of my mates for days and thought, god, if I want sushi, I’ll go get sushi…! I somehow managed to start a conversation with people I didn’t know at all, all on my own. This is something I’ve always been far too scared of doing. I think went to a hotel on my own and sat in the hotel bar on my own. I’m usually very worried about disabled access like can I get in and out the shower, or bed or off the toilet! But I just did it, all by myself. The next morning I did something amazing and just forced myself to watch video’s on youtube of hip replacement surgery. This is something I’ve been trying to face for the past 7 years when I was first told I needed it. It really wasn’t that bad! I am glad I finished my fry up first though…

Since then I got myself in more of a muddle with my boyfriend and have been seriously confused over what to do. I wouldn’t say I’ve gone backwards, I’m just in a different place to how empowered I felt last wednesday and I may only realise the strenghts or weaknesses of my behaviour now in hindsight. Who knows. The details of what’s happening with my boyfriend, I guess are pointless. All I can emphasis is that it’s important to avoid reacting, but not to beat yourself up if you do. Just to watch the reactions you’re taking and have confidence in the fact that you are always changing (with or without guidance- with is much nicer though!).

So now it’s the wednesday before my third session and my first operation is in exactly a week. I’m shocked by how composed I feel about the operation. I’ve realised that quite a few of my friends have a lot of say about my relationship and I’m a little bit done with seeking advice with people as though I can’t manage these things myself. I’ve realised I’m my best judge of what I should do, but right now I don’t know what to do so I’m taking a little break from most of my friends and my boyfriend. I think the people who care will understand the stress I’m under with getting ready for surgery and the people who don’t (possibly my partner) are probably just relationships I’m just growing out of.

I’m looking forward to seeing how tomorrow goes.

Thursday  30th September 2010

Before I was diagnosed with RA I used to dress like I guess what most people would call a goth. I used to get bullied for it and eventually gave up and started dressing like everyone else but retained some of my combat gear. (Actually I still own some of this stuff!) As soon as I became physically weak the last thing I wanted was to stand out, especially as something that most people don’t like. Now, in no way am I going to revert to my goth days (formly known as emo?) but coming away from my session yesterday I realised I needed a new kind of identity. I’ve decided this is going to be “soldier” of some kind. I’m not going to drag out the old camo gear, but I am going to start to rid myself of some of the girly girl stuff I wear that reeks of “help me”. I left my session with John and went straight to milton keynes. Eating on my own wasn’t even a challenge this time. But I decided to shop in the one place I always feel weird in… sports shops. I’m so used to going in and thinking that other people are thinking: “why is she in here? how can she do sports on crutches? She must be buying a present for someone… Why does her leg look wonky?”. Maybe they are? But they’re probably not. It doesn’t matter either way. I didn’t really know what I was looking for. I browsed the girl section, consciously avoided the kids section (which would have probably been my first stop in the past!) and decided pink sports clothes weren’t going to help my new personality. So I went to the mens section and found loads of warrior-esq t-shirts! Funny how much social constructivism can stop us from being who we are?

So to cut a long story short, I went shopping yesterday and bought some t-shirts and a bag… Well it felt life changing to me…

Friday 1st October: good day, bad day, who knows?

So something’s occurred to me today about the importance of this operation and my constant feeling of being let down by people who just “aren’t acknowledging the importance of it”… well they’re not going to until I do. I think that’s only happened today when I’ve been told for the second time it needs to be deferred (this time because I’ve run myself down with worry and got slightly ill). I’m starting to realise that if you look at all the annoyances in your life you find out they all stem from the way you’ve been annoying yourself. I’ve heard this so many times and it doesn’t make sense, but it’s just about starting to. As soon as I truely acknowledge the importance of this operation and the seriousness of my condition without being embarrassed of it, so will others around me and my unconscious nervous system will stop beating me up with anxiety because it would have finally realised this operation is good for me…? Maybe? Not sure I’m on the right track here. Feel free to provide some input.

Saturday 2nd October: When is enough enough?

I think it’d be unrealistic to provide this blog like a continual success story. I’d be lieing to myself if I used it for that reason. Today I’ve woken up in the worst pain I can remember. It’s probably on a parr with the first day I flared up when I was 16 (although looking back I often wonder if that day was only horrifically painful in relation to not knowing what arthritis felt like). When you wake up feeling like shit, I guess you generally think back to yesterday to try to figure out what has made you feel like shit, right? Cause and effect or something? Yes, I physically exhuasted myself yesterday. That could be it. I also ate some crap food yesterday packed with artifical stuff… maybe that’s it. I also saw my GP regarding my deferred admission into hospital, who with the best intentions, and with the context not being revelant here, told me “you can’t move”. I’ve been taken off the drugs that suppress the disease until my operation is over and the wound is healed. So he was being sympathetic and reminding me not to be so hard on myself for what I can’t do at the moment. But I hadn’t until this morning realised or felt as though “I can’t move”. Over breakfast, my mum has been showing things she bought for me; would I be able to reach vegetables if they were on the top shelf and I replied “If doesn’t matter. I can’t do anything now”, and meant it.

Basically I’m really interested in how the agreements we make with others actually affect us psychosomatically. I’ve never in the time I’ve been diagnosed been someone that “Can’t do anything“. Perhaps this attitude has been to my detriment? I know, from a purely biological percepption, the way I deal with Chronic Pain is to push myself as hard and as fast as I can: I do as much as I can and get pretty pissed off with myself when I don’t make it. My logic is that the more you trigger your pain receptor sites on your neurons the more they eventually become desensitised. (Feel free to correct this bad science). And people admire this logic and my ability to rise above pain. This is why I love martial arts. I love being a disabled martial artist. The word “OSS” which you say as you enter the Dojo and reply to your Sensei means to go beyond, I believe. In Karate we get knocked about and every bruise helps to condition you against the real thing if it ever were to happen. However, I see a lot of amazing martial artists who still have a certain vulnerability and weakness in their mindset in social situations, or aren’t so confident outside the Dojo. It’s easy to have this ancient warrior philosophy in an environment that endorses it, but unfortunately you slip into your “normal self” in the pub.

I guess that tradition attracts people who need that philosophy kicked into them and aren’t sure how to do it without a man in white and black shouting at them. Like myself?

I’m starting to wonder if this logic becomes a way of dealing with emotional pain. Whether you constantly ask for more to desensitise yourself from hurt, sadness, loneliness, being left alone, being being let down. Whether you can put yourself in these positions on purpose in order to strengthen yourself. Not too sure. I guess why doesn’t matter. The point is it doesn’t work. It doesn’t strengthen you, just makes you regretful and dislike who you are at which point all hell breaks lose; you stop looking after your body, stop exercising perhaps or take up a bad habit, drinking? smoking? eating too much. Perhaps you start to tear your relationships apart to confirm how crap you think you are. Perhaps you unconciously ask others to let you down a bit more. And when a figure of authority reminds you that “you can’t move”, you subconsiously say “Okay”.

Friday, Saturday or Sunday 1^st, 2^nd or 3^rd October: It’s not you it’s us.

I think John’s ability to deal with clients is evidence of how sound proof his teaching is. I felt a little bit ridiculous after sending him my last email. Unfortunately there isn’t an undo option for email.

So basically I decided I needed space from my boyfex. I’ve been emerged in self help books and John’s recordings, trying to weigh up what the “right” decision is. I decided my boyfex is a bully and I’m not going to take anymore. The book on how women are too nice for their own good told me so.

So I text him (yes, text not talked) and said I didn’t want the relationship (placing the emphasis on not wanting the relationship rather than not wanting him). In my head I’d realised how much I’ve been playing this vulnerability role and he wouldn’t like me if I changed into an independent person. Also that although he thinks quite hard about things, I didn’t think he’d never change. Well, not in a way where we’d complement each other, or where he’d like me without my vulnerabilities. I know my life’s going to change as soon as my hips are replaced… why then have I been putting it off for 7 years?

Monday 4^th October: Enough is enough.

How ironic that I’ve just typed the date realising Monday the 4^th is the date that caused me and my boyfex to have a massive argument that led me to contact John. Monday 4^th was supposed to be the night before my hospital admission. I pre-empted him letting me down. Got jealous about something. He had no clue what I was talking about but shouted at me and ended it with me. So I thought enough is enough and called John. He offered me an appointment the next day. I was apprehensive about whether I had given myself sufficient “time to be miserable”, I think were my words.

So anyway, after text dumping my boyfex I was busy waving the flag for women’s lib when anxiety walked into the room. I thought: “Shit. I pre-dumped him so that I could be safe from the anxiety of not knowing whether he’d dump me or of him treating me badly or him letting me down or him having too much baggage and it affecting me” (you get the picture). But it didn’t work. Because now I felt anxious times a billion. So I “caved” and called him and said in a patronising tone “do you need to talk”. He said yes and decided to come over so we could talk face to face. So I sat there with my head and my heart and my gut all shouting different things at me and then just listened to him. Something odd had happened to him where he just stopped talking about us and focused on the operation. Then what he wanted but that most of all he wanted me to be ok and not anxious prior to my op. So he said I could have space but he’d be there for me. We then lay down a couple of rules about what space meant.

He stayed round to help me tidy my room up for my operation. He kept trying to sort my things out for me and I was really embarrassed of my mess. I kinda gave in and let him help, but there were certain things I just wanted to do for myself…

We soon got into talking about my new admission date. I knew before I pre-dumped him that the new date coincided with him being away. I then started to get annoyed with myself for getting involved with him, relying on him. Then annoyed at him for booking his flights or not being there for me. Etc. The chatter in my head continued until we finally had it out. He outlined some options of what we could do with our relationship. Each of them led to anxiety. All of them. We spoke about it until both our heads were sore. Then it finally finally I mean fiiiiinally clicked. Everything will end up in anxiety if I don’t decide right now to stop it. To stop listening to the chatter in my head. If you start loving yourself, like really love yourself it won’t carry on. The chatter stops. The anxiety stops. Because there’s nothing for it to shout at you about. You’re okay despite your weakness.

And you can finally just be and not do. Changing situations to calm yourself provides a quick fix but you end up in the same situation again one way or another because the predisposition for it to happen, bullying for example, is ingrained in your thoughts. So I’m replacing the image of me stuck in a hospital bed feeling so sad because he’s let me down again one way or another with an image of me sitting there, busying myself with all the stuff I’m going to have to do and thinking “yeah, he can’t be here as much as I’d like him too, which sucks, but wow, I can actually use my legs now, I can finally move forward”. This realisation came to me mid-argument. I said “do what you want, I’ve had enough”. I think he took this as a supplementary-dump but what I mean is he can do whatever he likes, I’m not going to let my feelings depend on his actions, or anyone else’s. I think I’ve realised why I had to see a hypnotherapist previously to get over my “new-hips-phobia”. I’ve been terrified of it for years. I never wanted the doctors to take this pain away because without it how the hell am I going to know I can beat arthritis without it being physically removed? I have just about two weeks now to finish my 12 year mission on beating arthritis whilst still suffering from it. Why should I have anyone else fight my battles for me?

I’m not scared of the operation now. At all.

I have just about two weeks left to really kick its ass; I’ve spent 12 years proving that I can rise above pain and do degrees and go clubbing and do martial arts etc just to prove I’m not going to let it beat me. But have I ever proved I can be totally happy and love myself and the arthritis for all the life-enriching challenges it brings me? That’s why I’ve decided it’s enough. And now the doctors can have it from there. I’m pretty sure I have given myself sufficient “time to be miserable”. I’m not going to bully myself if my behaviours don’t all change from this point. But I’ve switched the message inside.

Switching the voices off is a decision and I’ve decided to switch the voices off.

Tuesday 5th October: Blank

Today was the day I was supposed to be going into hospital. I recieved a call from them saying my tests came back as clear and that I didn’t have an infection afterall. I’m a bit upset by this because the pain is getting unbearable and the new date in 2 weeks time coincides with my boyfriend going away. So I’m trying to think of how best to deal with going through it all without him. I’m unsure of how I feel about it and scared to think of it because I know I’ll get anxious.

I’ve spent most of the day investigating how to start a website. It’s something I’d really like to do whilst recovering. I put a question up on yahoo answers and was informed of how unrealistic my expectations were and how I’d need to spend a couple of years reading books on html before starting my own website.

I’ve managed pretty well to keep the anxiety switched off but at the same time feel quite sad and dissapointed. I don’t really want to think why. I’m just really looking forward to the operation now.

Wednesday 6th October: What must they be thinking?

What are the chances that one of the first times I go out in a wheelchair, with no make-up on, badly styled gingering hair, modelling my new sushi-stained ‘gender-identity-crisis’ range, shopping for extra large maternity style shirts to wear whilst in hospital and big pants that ‘I wouldn’t mind a nurse putting on me’, that I bump into my old best friend from when I was 14; who was looking gorgeous, married and had just bought her new place?

Even stranger, what are the chances that I didn’t mind much?

Thursday 7^th October: Moving Forward

I had my fourth session with John. As always the journeys from London to Buckinghamshire are really good for reflection. I’m amazed at how fast everything moves with John’s sessions. I really feel like I’m digging up a lot of old crap without even having to talk or cry about the old crap. I thoroughly believe his method is the best for moving on and the more I listen to the recordings or look at this site it becomes evident of how much work has gone into this.

Today I did some more stuff to scare myself. I think I got over one of the biggest hurdles that has been scaring me for a long time. I left the session and decided to the shops (I didn’t manage to buy my big pants and shirts yesterday, I was side tracked by Costa). This time I decided for the first time (ever) to use the wheelchair whilst on my own. This is massively scary for me and what I’ll usually do is walk in immense pain on crutches and limit my walking distance. The wheelchair is still painful to use since I have rheumatoid arthritis in my wrists and left shoulder too, but relative to walking at the moment, it’s nothing. The scary part of using a wheelchair whilst alone however, is that I have to ask for help. There’s just certain things you can’t do; non-accessible doors, high-shelved items, high payment counters. Normally just having someone there makes you feel reassured that you’ll get through things. I always get scared of going places on my own in-case I wonder far off and get too exhausted to get back to the car! So I learnt something about asking people for help without sounding like I was pleading or like I needed the help. After all, if they said “no” I’d just ask the next person who’d probably say “yes”. I enjoyed taking ages at the M&S counter whilst there was a massive queue behind me, where normally I’d feel really embarrassed. Hopefully it’ll make them think about how well they cater for those with disabilities.

Again I went out for dinner on my own. This was really scary in a wheelchair. I decided that although Yo-sushi felt like a massive step, it is the kind of place people do go on their own, so I went to a restaurant type restaurant… (lots of forks per course, dim lights, etc). It doesn’t sound like much but it feels really liberating. Although I think I’m now going to have to find some self-empowering-experiences that don’t involve eating copious amounts of calories! I’d rather not make another big-pants-stop at M&S for a while.

Friday 8^th October: Growing Up

Last night I managed to have ‘the’ conversation with my boyfex.

It went something like this:

Me: “Do you mind if we just stay friends for a while? I need to concentrate on my health.”

Boyfex: “Absolutely. You need to look after yourself.”

Why has no-one written that as a guideline in a self help book on relationships?

Monday 11^th October: Mixed messages

I keep talking to my hands every day, telling them they’re not allowed to flare up and that they have to stay healthy. I think they may be getting mixed messages. Sometimes I think I’m grateful the arthritis has got me bad in my hips rather than my hands because I can replace my hips and never liked running around much anyway. I love writing, drawing, playing guitar and have learnt how to do karate using my upper body. My hands are starting to hurt quite a bit now because they’re taking so much weight on crutches.

I had a sudden fear today about the operation when me and a friend were talking about general anaesthetic. It’s the going under bit that’s scary, where I may want to say no at the last minute but can’t because the falling asleep is like suffocating. I wish I could get rid of the part of me that wants to say no.

I’ve learnt to ignore the voices in my head but not to make peace with them. I’m really worried about being alone during this operation. I really wish I could gather the strength together to not care about who was “there for me” right now and just appreciate the people who were there. It’s kinda like with my hands where I keep telling them what I don’t want them to do but all they can hear is me saying is “flare up”.

Wednesday 12^th October: A prostitute, saboteur and victim walk into a bar…

Today I’m trying to learn how to be ok just doing nothing. I’ve been reading a lot, and I usually read with the intention of learning something. So I’m trying to find a way to switch and not feel anxious about it.

I had an emotional explosion at my boyfex last night about how he isn’t there for me, how I can’t trust him and how scared I am of all this op stuff. [insert punchline here]…

I think I’ve realised my best option is to stop relying on people or things that have stopped being reliable; bwb’s (boyfriends with baggage), uncertain career choices, old rotting heads of femurs and acetabulums. Doing that is quite scary though as it means letting go of other people helping you out of your struggles, and just doing things for yourself.

I’m getting quite anxious about the operation in that I keep finding new aspects of it to worry about. The last was what will happen after? If I don’t throw a hissy-fit and alert everyone to how scared I am they may not be there to look after me after… Load of rubbish right? I’d really like to see myself in a position where I can go into this surgery and be ok with myself, ok with feeling anxious or apprehensive, and ok with feeling alone. Just ok to acknowledge these feelings and ok do nothing about them.

Wednesday 13th October: a week to go…

I think I realised today that all the dilemas and problems and anxieties I have aren’t actually problems.

This is a weird realisation. Something to do with being and not doing. Can I suceed at another evening/day of doing nothing? It’s hard work.

Friday 15^th October: What a mess…

It’s maybe 4 days away now. I’m taking a break from reading books and thinking about how to improve myself. I guess I need some time just to feel and stop thinking. And to pay attention to packing my bag and tidying up before I go in. I wanted to give some people gifts to say thank you for all the support or at least just thinking of me and being there for me during the hardest year and a half of my life. I hope it’s all over now. So I’m gonna get those gifts together now. For some reason I’ve mainly bought people things to do with fighting. My friends I know through karate got a special martial arts weapon each and my best friend got a punch bag for her new house. I haven’t bought myself any weapons but I think I might.

I’m in a strange place at the moment. I feel sad and happy. Guess I’m ending and beginning stuff. I’m starting to question if you get a second chance at life, what do you do with it? I’ve never really thought about it. I guess I’d live more, do more of the stuff I love, be with people I love and not worry about what others think. I’d waste less time feeling low because there’s just no point. I’d criticise people and myself less. I wouldn’t live with regrets.

I think there’s different ways to learn things. I’ve always tried to learn through books. This is good but I think books can conflict eachother a lot. It’s like listening to many voices talking about the same thing. Eventually you’re not certain who to believe. I think there’s a different type of learning that just happens when your just yourself and become open to it. I guess this is more solid because there aren’t any speakers. You just feel different things and learn from it. I’m wondering which part of your body your memory lives in, because I feel if it wasn’t for your memories you wouldn’t need to read books. Them seem to confuse your feelings and you can’t tell if your learning from what’s happened or what’s happening now. I’d like to place a lot of my memories in the used up piece of hips they’re taking out of me next week. They’ve served me well but I need new ones.

Saturday 16^th October: Keep Going.

I think if I haven’t learnt anything, I’m slowly learning to touch type. Not really as rewarding as learning to find true happiness and fulfilment, but it will do for now. I think with everything we’re all learning here it probably could be summed up with a couple of words; “accept responsibility”, “be happy”, “love more”. Or just “love”. I don’t know what the underlying message is, but all the other stuff you take in are just examples from life, from your life or other peoples’ lives, that help you understand the underlying sentiments, because you have to realise all the other stuff you’ve been taught is misconstrued. So at some point you have to stop looking outside yourself for things. Stick with feelings because although feelings can mess up a little sometimes, they’re always intact to some degree. Or so my intuition tells me. If there were two words that summed life up for me it’d be “keep going”. I wonder if I can get this inscribed on my new hips so that it shows up all funny at airports.

I’ve just read the email I sent John prior to starting sessions. It was an “abridged” version of my messed up life love, and I tried my best to write objectively; “this is my past, please sort it out” kinda thing. I know now that I wrote that and even writing this, is totally for myself. I’d like to be at a point where I didn’t need to write about the past anymore, because it seems to change every day as I realise more and more. I don’t see the past as I saw it on the 16^th September 2010. It’s all changed now and will continue to change. I have sorry’s I need to say, people I need to say I love you to and people I need to say I don’t love you to. If my future Rena could talk to me I wonder what she’d have to say? Probably just “Keep going”.

Monday 18^th October: Tonight Mathew, I’m going to be myself.

It’s only happened about three times in my life where I’ve put my make up on and taken it off and restarted it because I was that fussed about how I looked. Today was probably the third time.

The penny finally dropped with boyfex when I spoke to a previous ex (for the sake of dragging some humour out of this tragic and over thought life love, I’ll call him oldbeforemytimeex). To cute a long story short I spoke to oldbeforemytimeex who I’ve never really got over, to see if I could get some clarity on boyfex. Oldbeforemytimeex reminded me of my strengths and also what it was like to be in a relationship with an strong and supportive partner and I realised a lot about why I didn’t ever get over him. I don’t think I’d ever cut the ties. Oldbeforemytimeex told me how hard it was getting over me and how long after he had loved me for but also that he had just got engaged. This was pretty tough. I’m quite aware of my ability to flicker between transferring my old feelings onto different people like different templates but I couldn’t help feeling really emotional about this. We decided to meet up the day before my hospital admission as I was already nearish to him because I was seeing John that day. I wasn’t sure what I was looking for. A massive part of me wanted to tell him I’m never stopped loving, stop the wedding blah blah blah, very romantic (or creepy). The other part of me just wanted closure and to put an end to everything in my past before the big day.

So getting ready was a nightmare. I was pretty anxious. I made myself look all pretty and sparkly, put on new clothes and nice make up, but kept feeling anxious. I then just looked at myself in the mirror and I just couldn’t really see myself underneath it. So I thought screw it. I scrubbed off the pretty make up, took off the sparkly new clothes, put on some of my everyday make up (you have to wear SOME, don’t you? Can’t let them think it’s All gone down hill since you broke up, right?) and I put on the same dirty and rugged t-shirt I’ve been wearing non-stop for the past year. It’s kinda oversized and hides my belly. You know? Your everyday “back-up” wear when you can’t find anything else. I looked at myself. I looked relatively rough but just felt a big sigh of relief.

I saw John and had some amazing realisations in the session, which are mine, mine, mine. So I won’t put them here. (John will understand the irony of this statement J ) I also decided to get rid of some of my “stuff” and my safety stuff. It seemed deeply ironic that I got to the door and John was on crutches. I actually thought when he opened the door that he was faking it and that he was making a point for my final session! But when I saw all the gaffa tape around the hand bars I knew it was a genuine ouch! The first thing that came to my mind was he’d need some suspension crutches like the ones I have. I’ve recently bought a new “hospital” pair, for the surgery. For some reason this surgery has meant I’ve gone out and spent more money than ever on mobility aids. All together I had 3 pairs with me: the squeakies that I was using, the bad ferrelled ones in the car (the ferrels are the bits on the bottom and can be changed) and the shiney new pair that need adjusting. Even stranger just before the session I was talking to my sister in Australia who said that she couldn’t believe how amazing and strong I was, because she’d just had two weeks on crutches and couldn’t deal with the way people were looking at her and making comments. I’m not sure where I’m going with this, but my automatic thought was to give John the new “hospital” pair. Which part of me thought to buy even more mobility aids because I’m having an operation to get rid of the things?! I couldn’t give him the bad ferrel pair because he’d slip (I’m resilient to slips now), and I didn’t want to give him my squeaky pair. Somewhere in the session, and after talking to my sister, I realised that if anyone could handle walking around making that much noise on crutches it was me. Not only have I become resilient to slips, I’ve also finally become resilient to the comments, looks, and questions that people have in store for you when you’re on crutches. (I also have many recited punch lines for the constantly re-occuring “oh my god! What happened to you?” question. I like to have fun with this: “shark-bite”, “snow-surfing”, “I fell off and under a milk-float”, “oh my god, what happened to your manners?” or my personal favourite, “oh, just chronic illness”; I save this one for the most tactless people, most people just ask out of niceness, but it doesn’t mean I can’t have fun with it). I have a shirt while to enjoy my noisy crutches.

Tuesday 19^th October: I can’t die; I’m the main character and this is my show.

I’ve had 7 years to get ready and I still haven’t packed my hospital bag.

Yes, so I’m up blogging the morning of my operation admission. I figured people can help me with packing my hospital bag, but I’d need to sort my life out for myself. When I envisaged “getting ready” for this operation I thought: send thank you cards to people who have supported me, tidy your room, sort out post, lose weight, bin anything embarrassing I wouldn’t want mum to find if I needed her to go through my stuff while I’m in. I’ve done all these things a bit, but sorting out my life and saying goodbye to the past has become my priority. I’d really like a new life now and to do something productive with all my years of pain.

I came away from seeing oldbeforemytimeex last night knowing I’ve changed so much in the past few years it’s good that we parted, but also dissatisfied that I couldn’t tell him how I felt about him. It’s strange that prior to hearing what he had to say, we’d both written our own stories of what had happened between us, in our heads. Both stories were to keep us safe and comfortable. And I guess that’s where he is now; safe and comfortable and I’m happy for him. Just also sad. I did the “right” thing and didn’t tell him how I felt. He seemed ok where he was. I thought I’d finally left it behind, but still had trouble sleeping.

The thing is, if there’s one thing I can take from that, it may just be that the “right” thing isn’t always the best thing for you individually. If I was unconditionally loving to him I’d just accept where he is in life, that he’s moved on. And I tried to do that, but this morning I didn’t feel unconditionally loving. I felt a bit bitter and hurt. Perhaps because I haven’t been unconditionally loving to myself and told him what I needed to say, for me. I keep looking to John for some guidance on the “right” and “wrong” behaviour, and I think I’ve spent my whole life trying to find “the rules”. But they’re not my rules. They’re someone else’s. Someone who found consolation once and told others “this is how to love properly”. So even if I say nothing to him again, I think I’ve realised I not only have to re-write the stories to say good-bye to them, I also have to re-write the rules, so that they’re mine. If I keep my heart happy, my heart will keep me and others happy.

I wanted to give my mum and dad a present before going into this operation. It was almost an “in-case anything should happen” present. I’ve decided I’m not going to. I’m going to give them it when I get out, because I know I’m going to be ok. And I’m not going to live my life doing things “just in case anymore”. You know you’ve moved on when you can withstand not being safe and comfortable.

Sunday 24th October: I can’t wait until…

If I walk to the bathroom using a zimmer frame I can buy a little more time from the nurses before I have do my bedside strip wash; I’ve worked hard for that walk and can moan about being exhausted. I’ve managed to have good and bad days here, which really shocks me. I envisaged the recovery period as just nothingness. I didn’t realise it’d be so eventful, or that I could make it so eventful. A couple of things that have been said to me; comments  I’d like to keep in my heart forever. It seems like people say things and it happens for a reason but I think somehow we draw their reactions towards us.

The overnight nurse was a bit impatient with me, but I think it’s because I slipped into child mode. The nurse just helping get this laptop out just reminded me “there’s no stopping you”. She seems to sing everything she says and everything she says seems to have a double meaning you could only produce with years of experience and wisdom. I sometimes don’t get her.

I’m currently trying to win against the old lady in bed 12. She doesn’t know we’re having a race but we are. I think I went into the operation a day before her and so have an unfair advantage anyway. Then again the surgery made the rest of my body flare up so I’ve had to fight hard to get the strength in the rest of my body to start the recovery process. I didn’t realise the recovery would be this challenging. Infact I didn’t envisage the hospital recovery at all. My mind just skipped from operation to being at home feeling alone. I don’t think that’s possible now. I’m very busy here!

I’m reading a book called Zen in the Martial Arts. I can’t wait until I can do martial arts and kick people in the face. This morning it fell open on a chapter about living in the moment. I put this down to fate and applied it to what’s going on here. I have to focus on what’s going on now in order to get to the life I want in 5 or 6 months time. I can still be happy here, rather than “I’ll be happy when I…”

Besides, I can walk right now. I just need a zimmer frame. Realising this, I managed to walk the entire length of the ward first thing this morning, with no pain killers or steriods. The point is, realising these things wasn’t fate; I used my body to the best of it’s ability to open the book and read.

Thursday 28^th October: Adjusting

I’m home from hospital now, just trying to get used to my new hip. The only did the one for now so I only have to learn how adjust to this one. It’s really weird because I’m in a lot of pain at the moment and can barely sleep but at the same time the deep pain inside is gone and my hip feels a lot more secure. I can put a lot more weight on it with the fear of it giving way. I feel as though I’ve been through some kind of war and everyone I know is treating me like a war hero. I really don’t think I acknowledged how big this surgery was before I went in, and felt stupid for feeling anxious. I know now because of the people that have reminded me this week that I have has major surgery. I know also because the past week has felt like a battle.

I realised also that my anxiety causes more problems than I realise. I’ve been very focused on changing the peripherals; circumstances or personality traits, or my feelings of anxiety towards certain things, but I think now I need to focus on that feeling of calmness I’ve always needed. I realised this because every time I had any conflict or mistreatment in hospital it was all due to me slipping into my old ways of being a scared victim. Every time I put my warrior hat on something good happened, or I resolved a problem. Coming home yesterday I was disappointed in myself for this but thinking about it, it’s ok. Some thing about being ill makes you weak and open for people to take advantage of you. Looking back I’m proud I managed even a few moments of assertiveness this week, considering how much of a blow to the system this surgery was. I’m happy I’m lucky enough to acknowledge this pattern too.

During the week I also realised the lady in bed 12 lives alone and I stopped racing her. The last morning I was in there she fell out of bed and dislocated her new hip. It sounded horrific. I had a bit of a problem with the physio and occupational therapist because they thought I was reluctant to be discharged. (I was just having some last minute anxiety over whether I was prepared enough.) So I hurried my discharge. It’s relatively quiet at home but I’m lucky for all the people I have around me. I feel really sad for the lady in bed 12.

So I guess now it’s just time to adjust to things: All the precautions I have to take to look after my new hip and then the way it’s going to change me as a person. All the pain at the moment is peripheral and, like my dodgy personality traits, will take care of itself now the deep down stuff is sorted. I guess it’s because I want it to though.

Saturday 30th October: Broken sleep, unfinished dreams.

I woke up today and realised that maybe I’m not here to do the things I’ve always thought life was ultimately about. What triggered this thought was going to bed watching a friend’s over indulgent wedding video on YouTube, thinking about the fact that that my exoldbeforehistime ex is getting married and then feeling sorry for myself because I can’t even sleep for long enough to get to the end of a dream because of the pain, and I’m not even allowed to put on my own dvt stockings at the moment; my mum has to help. I keep reminding myself that this is a phase and I’ll be independent soon. Then I can do all the same stuff as everyone else and live happily ever after.

Or will I? I know other people with disabilities who are happily married with children, work full time and don’t need their parents to care for them.  Looking back it seems every time I’ve had a chance to do these things I’ve pushed them away or been drawn to people or situations that could never give me these things.

I’ve always felt like there was “something more” I need to do before “settling down”, but at the same time felt stupid for feeling this or having “unrealistic” dreams. I wonder whose message that is. I don’t mean to reject relationships; what’s life about if it isn’t the people you spend it with? And I think for some people that’s enough. But I seem to make myself quite miserable by pushing people away and then wondering where they’ve gone.

I think I’m in a bad mood today because I was informed you can get post traumatic stress syndrome from surgery; apparently it’s a trauma on your body. I have been feeling like I’ve been shot in the bum several times by a sniper. I agreed to PST yesterday and coupled this with lots of nostalgia. On top of this I received a communal text message from my ex oldbeforehistime ex, and felt worse. The message was informing people of his number change; shows he still wants me in his life but also doesn’t need a response.

I think when something happens and you’re warned it may make you feel like crap, you have two choices; you can either act as predicted and feel like crap or you can be grateful for the warning and do everything to avoid feeling like crap.

I’m having a Halloween party tonight. I’ve been told it’s too near to the surgery, but then that’s probably the message of people who don’t realise their own resilience. I’m also giving up on wanting what everyone else has tonight. I think I can accept now that I don’t need to live out other people’s dreams. I may also delete his number tonight.

05 January 2011: Still a bit numb.

So, I’ve taken quite a big breather from thinking about anything since the operation. It’s been really tough doing anything. Even my thank you cards were written in a morphine induced state and left in my car boot for a while before I realised I’d never made it as far as the post box with them.

So I’m just getting in a situation at the moment where I’m ready to start moving forward with things: I was getting very frustrated with how long it’s taken to get off the crutches so made an active decision yesterday to hide the crutches from my view and force myself to start walking. (This isn’t medical advice so please don’t suggest this to any friends going through a hip replacement!). I’m not sure how my physios will feel about this. So as for fighting the arthritis, I think I’m more working with my body now, just trying to keep it happy and hopefully it’ll start working for me.

I’m trying to put all my energy (which is pretty limited at the moment) into changing myself and my ambitions during my recovery. It’s pretty hard not to considering what I feel I’ve been through. All the work I did with John has really paid off to make me so much more confident and better able to deal with the inevitable difficulties of this operation. I think had I not seen John this operation would have been “just another bad thing I’ve had to deal with in my life”, but instead it’s been more of a life changing event and I feel a million times stronger for it. I’m so glad I had John’s teachings there for me whilst I was going through this.

I’m in an awkward situation at the moment as I’m still waiting for the second operation. I’m not so scared of this one at all. I always knew the right hip wouldn’t be so scared. I’m just doing my best to make the most of my time. I’m guessing though, that if I continue to live my life in the moment and carry on spending my time doing what I most enjoy and being who I most enjoy being, then I can’t go wrong? At the moment a lot of my time is spent on writing music and reading. There’s lots of other things I’d like to be doing, but worrying about being productive has proved to be very unproductive. I think I need to go back to lesson one; the “chill out!” lesson.

Saturday 29^th January 2011

I’m trying to think how I’ve spent the past three months of my recovery. Looking back a lot of it has been the “work” you have to do as part of rehabilitation. Physio, exercising, more exercising. I’m not sure where the time’s gone. I think I’ve been less inclined to continue my blog because I didn’t quite feel I was progressing much in terms of working on myself, my happiness. I guess my emotional happiness has been less important lately. I guess that’s not a bad thing for the moment. Saying that, blogging isn’t supposed to be a continual success story, so I thought I’d blog today.

It’s been a weird time since the op. It’s been a mix of frustration and pain and being really happy and excited about the new freedom I have with the new joint, and the extra things I can do; a few days ago I put my own sock on for the first time in about 5 years! It sounds silly but it was extremely liberating. I usually have to take things with me if I go anywhere to help put socks on, or make sure I’m with a reliable friend. Putting on tights is a hideous effort. I haven’t tried putting my own tights on yet. I bought some today so I may do that later. It’s the little things, eh?!

I still feel quite heartbroken a lot of time. I think my massive efforts to get over past relationships before my operation dragged up a lot of stuff I maybe didn’t need to think about. Still, I’m quite glad for it all. I think a part of me was expecting to wake up in the recovery room and start a whole new life. I guess I am but I guess it’s something I’m having to work hard for. I still have the same hopes and ambitions as I had before the op, but I’m just sitting with them for the moment. Which is nice because I usually put myself under a ridiculous amount of pressure to achieve things or get things done. So I decided to spend the time that’s not physio-ing on doing things I really enjoy and see what comes out of it. So I’ve basically spent any bits of free time learning about music, becoming better at playing, writing, theory etc. It’s nothing to do with my ambitions of working in psychology but I’m just really enjoying it. I’m trying to appreciate moments more now. I had one the other day when I was in the car with a friend who can easily wind me up. There’s loads of things I love about her too but I usually spend a lot of time getting annoyed thinking what she’d said earlier was rude or something along those lines. The other day though we were in the car and she was just chatting about something and my mind just kinda stopped from all the stupid feelings of heartbreak I’ve been having lately and I just thought: “Wow, I’m really lucky. I have a car, which not every has, a licence, the petrol in the tank to get to where we were going, a really great and close friend, and the physical energy to leave the house, even on a school night!” And as we were driving this amazing view of London lay ahead of us. I said to her “look at that cool view”. She said “cool”. Then carried on telling her story.

Wednesday 9^th March: Lent

I was feeling quite miserable recently so booked another session with John. It was an amazing eye-opener. I feel I have already come a long way and possibly placed a huge emphasis on being assertive, which may have been what I needed at the time. But still I was not quite getting it. I feel ready now to explore things a bit further and try and get it. I can imagine it would be extremely liberating to live life from an entirely different point view. With no “buts”. I have possibly used my disability to make myself an exception; that yes Toltec wisdom is a great framework for the majority, but I’m different. So I’m really going to focus now on removing that “disabled” label, but still maintaining the ability to ask for help and receive help. I think another thing that’s been holding me back from allowing myself to break down my old agreements is the fear of this leaving me very alone; I have a few people in my life who have “been there for me” throughout all my health and personal difficulties. How strange would it be for me to just suddenly not share the same beliefs as them? Not get wound up at the same things as them (especially when it usually boils down to defending me or the mistreatment of those with disabilities)? Or not laugh when their having a rant about someone we have found to be offensive or patronising. But being alone doesn’t necessarily have to mean unlovable or misery or lifelong solitude. Some of the most enlightened people are alone in their thoughts.

I think I have often punished myself with loneliness. If I find relationships are getting hard I try to force myself to stay away from a person or people in the hope that I’ll know how to behave better by the time I get back to them or would have learnt a bit about independence. But this isn’t acting with consideration for others, and often others aren’t there waiting for me when I’m ready to resume the relationship. (This space usually doesn’t give me that much perspective, just bides a bit of time for me to forget what it was that annoyed me so much about them!)

So basically, I “do” Lent every year. I usually give up chocolate. I’m not sure why. I don’t think Jesus minds me eating chocolate. I don’t normally feel very spiritually enlightened after it either, just a little lighter. I’ve decided this year I’m going to try and spend each week of lent concentrating on one of the agreements outlined in the book The Four Agreements. And I’ll use this blog to explore things that have happened in the day and whether I can break them down to see what’s really going on.

Saturday 19^th March 2011: More Lent.

I think things are only just starting to make sense a little. Over the week I’d tried to stick to the agreement of being impeccable with your word. I had to mention to a couple of friends that I’d given up something odd for lent so that they’d not think I just didn’t like them anymore, since this would obviously change a lot of my conversations. I’ve realised how much time I actually spend moaning! I don’t think I’ve done too well with it this week, but at least I’ve noticed how much energy I expel on getting wound up and how much freer I’d feel if I could let go of this. I think previously a lot of my changes were about ditching a victim role, and I took this as more of a “stand up for yourself”. I knew that this wasn’t quite the point but I think I possibly did need to get through this bit. I think the way I’ve understood things for a long time has been that; yes, we’re responsibly for how much abuse we take, but that’s only up to a point and after a certain of point we truly are victims of things which are out of our hands. I’m sure people can think up some awful situations that warrant pity. I’m not yet in a position to deny this. And I’ve always looked at different situations as if they were on a sliding scale of how bad they are. I guess this happens a lot with regard to my condition because people with disabilities are often questioned and compared; people often say things to me like “my mum has arthritis, it’s not as bad as yours though”. And they may not be as physically “damaged” but it’s quite difficult to compare people against how “bad” they are. Is this to do with how much they suffer? So I think some of the reading I’ve been doing has shed a little light on this; that perhaps the amount of suffering we take on from external events or other people is reflective of how much we allow ourselves to suffer internally. Hopefully this will start to make more sense at some point soon.

Tuesday 22^nd March: Lent, first agreement.

I’m sure most people reading this have read the book. I’ve already read it once, but I tend to dither a bit with reading and read things slowly so I understand it all and as a result never get to the end. So instead I read The Four Agreements really fast. I loved the philosophy behind it but didn’t like the writing style much (perhaps because it doesn’t warrant dithering and you can read it quickly!)

Now that I’m reading it for the second time and things are really starting to make sense I’m enjoying it more. So the first agreement is to be impeccable with your word. Since lent started I’ve broken this agreement many times. My friends have concluded that I’ve given up “bitching” for lent and that would explain why I’m so quiet!

I think I’m only just starting to understand what is meant by this agreement. I think the most powerful thing about it is being impeccable with your word towards yourself. I previously assumed that this was less important and that this agreement was more about just being nice to others, avoiding conflict, generally not having bad things to say. But from what I understand now it’s more about speaking with truth, and yes not getting yourself involved in unnecessary conflict, but it’s not about just being “nice”. More about being honest. Using this agreement on yourself seems to be the most powerful part because as you learn to criticise yourself less then you begin to feel less emotions of anger or jealously towards others. Or this is how I understand it at the moment. I think this is going to take an open mind and for me to understand that I haven’t “got it” exactly for a long time, because once you feel you’ve “got it” you stop learning.

So initially I was annoyed with myself for breaking this agreement for lent, but then this is just a time period for me to focus on these things so I’m kind of glad that I’ve noticed the points in the day when I’m not being impeccable.

Friday 25^th March

I’m starting to think that the way religious guidelines can be misconstrued isn’t very helpful, ironically when you’re trying to live by them. The things I’ve learnt here I feel like I’ve heard before somewhere in religion, but I’m not sure. The way it’s been interpreted seems to always provide people with a “good” or “bad” way to live. I seem to be constantly punishing myself for not living the way I feel I’m “supposed” to, or for having bad thoughts. The purpose in enlightenment should always start with the self, and that includes emotionally freeing yourself from feeling awful.

Before I came to see John, I had actually found out about him purely by chance because I started a conversation with someone whilst on holiday. We were talking about ill health. I was moaning to her about a wedding I had recently been made bridesmaid for. I had told the bride I wasn’t sure if I could do it and told her I was due to have major surgery. The bride to be then started crying and said “I just feel like no-body cares about my wedding”. From then up until the wedding day we had continual conflict. I had told friends about what she said and other people were starting to dislike her. I carried on talking about this story of victimisation all the way over on my holiday in Crete. I was quite used to people reacting by saying how horrid this bride sounded. When I brought it up to this lady however she explained to me some of what John does and that the whole thing would make sense if I saw him. I’ve tried since to sort things out with the bride. She made an effort around the time of my operation but we never spoke about the wedding. Only yesterday I was talking to another friend, still feeling really hurt by the whole thing, despite having gone through it many times and having “realised” the things I did “wrong” and what I was “supposed” to have done instead. But I’ve still felt really upset by it. So now I’m thinking perhaps there isn’t anything else I’m “supposed” to do with this, or this sort of issue. Even if I was to plan to have a talk with her about how I felt I can’t possibly guaranty that that’s the “right” thing to do or that she’ll react in the “correct” way. I’ve realised that I went somewhere from judging her and being really angry at her to judging myself and being really angry at myself for allowing the friendship to fall apart. I think I’m starting to sit in the middle a little more; I was having huge health problems, she was getting married. What happened happened, and I need to just accept that people won’t really realise what going through all this is like. Just as I can’t know what it is to be her. So previously where I was trying to stop judging her for our falling out, I’ve starting to realise now that there isn’t a right or wrong. There’s just two people with very different lives.

Tues 29^th March: “It’s as if it knows”

The past couple of nights have been progressively worse in terms of pain. This time it’s the right hip. If what happened in the months leading up to my left hip replacement, is anything to go by, then I’m due a lot more sleepless nights, quite a lot of near collapsing when it gives way and some very embarrassing sudden shooting pain or spasms in public places. Luckily for this last side effect, I won’t be out in public places much as I’m planning to quarantine myself pretty much until the next op, in two weeks from today, to avoid getting any kind of cold or virus, as this will postpone my op and it’s all been timed in perfectly with drug withdrawal of my usual medication; pushing it back further could cause a really big flare up of the rheumatoid which is what happened after my last op.

I’ve heard people say things like “it’s as if it knows the operation is coming up”, and that’s why my right hip is now “giving me hell”. I’m trying my best to lie to my right hip and tell it the op isn’t for another year, so it can shut up screaming at me. I’ve heard it already? These are interesting phrases when I consider the “not taking things personally” thing I’m trying to do at the moment.

I had a pretty interesting thing happen yesterday when it comes to not taking things personally. I parked in the shopping centre so I could pick up my regular sack of pills from the pharmacy. The nearest disabled bay to the doors was actually quite far in walking-on –a-disintegrated-joint terms, as the nearer spots had been taken up. This put me in a bad mood before I even got out the car. As usual I walked past the other cars, looking to see if they had blue badges and as usual lots of them didn’t. So I was even more upset. Victimised? I then noticed there was a guy sitting in one of the cars, so I walked past him giving him a really obvious dirty look. He reeled down his window and shouted “what’s your problem?” at me. Stupidly I approached him (I’ve been physically threatened in a similar situation before so I’m not sure why I even decided to police this situation!). I told him “you’ve forgotten to put your badge up, you’re in a disabled bay”. He said “I’m just waiting for someone.” I thought “here we go”. He said “She’s just like you. She’s hurt herself”. This I guess hits a sore spot; the usual jovial assumption people make that if you’re on crutches you’ve done something really “crazy” or have been drunk or fell over or did something to injure yourself. I said “I’ve not hurt myself. I have a long term disability.” By this point I was pretty frustrated, not at him for being there for a few minutes to pick up a friend who was also having difficulty walking, but just at everything: How much pain I was in, all the years I’ve had it for, the fear that one day I’ll get old and people won’t assume I’m just a “normal” person that’s injured themselves; they won’t even know I’ve had it so long, they’ll just think it’s the effect of old age and I’ll blend in somewhat. The thing that I was most annoyed about was the fact that I knew how he’d respond. I knew what he was thinking. I knew he’d probably stick his fingers up at me, or swear at me, and then later laugh about me for being a walking stereotype of a moaning disabled person.

I guess there was an element of pride in how I told him and used that title of “disabled”. I guess this label puts people somewhere on a sliding scale. More in pain than others? It’s really hard to utilise a system which is put in place to help you, without it affecting your head.

He then said “I’m really sorry”. I walked away and then heard his engine start up. He must have driven off, out of the parking bay, that was never mine in the first place. This whole scenario must have taken about 30 seconds but was loaded with about 12 years of anger. But it wasn’t this guy that was “giving me hell”. Nor it is my right hip. It’s strange.

Thursday 31^st March

I’m having a “bad” day. Bad meaning I’m not getting things done as I’d planned. I’m getting quite stressed about the next operation coming up. Had a bit of an argument with a close friend earlier for moaning about how she was upset about something relatively trivial. Feel rotten for it. I seem to be looking at almost everyone I know with a lot of anger and frustration that they just don’t get it. Or don’t understand how big a deal it is to be going through such a big surgery. I don’t think I realised myself, until I had woken up from the last one. I feel almost as if I’d rather not have people around me when I’m in hospital. Last time a good few people came to visit me and spent a lot of the time talking about their problems. Almost assuming that because I’m laid up in bed I have nothing going on in my life and their more interesting lives are what I’d like to talk about. Perhaps I invited them to talk about it. I’m very careful now in asking people “how are you?” when I greet them. Asking is almost false. I’m gonna sit on this one and think about how I can deal with it. I’m sure there’s a much better way that feeling permanently angry at other people for the things I’m going through.

Monday 11th April: NIL BY MOUTH

So, I’ve managed to get myself set up with internet and laptop all on my first day here. I’m quite happy about that. I’m just typing this up in my cubicle hoping the nurses don’t tell me off because it’s lights out and my computer screen is quite bright, and I obviously can’t sleep. I have a 5:30am start because I’m one of the first on the list. I’ll have an hour to drink water and then it’d nil by mouth until after the operation. I’ve had a massive dinner knowing I’m not going to feel like eating much tomorrow.

It’s a little different this time. Although I’ve managed to get exactly the same ward and even same bed! (The one furthest away from the toilet or kitchen so I’ll be having cold toast and tea everyday this week I guess). The doctor on my surgeon’s team are a little less fun than last time. He didn’t seem to find me funny at all when I asked to see my ruined joint. I think I’m probably a lot less anxious now although I feel like I am. I’m a little worried about my parents. They seem quite stressed and worried. So overall I guess that’s a lot of worry. My sister’s come along this time though to try and help keep everything calm! I have one of the best friends I’ll ever make here too. She’s been through pretty much all of this with me and it’s just great having her here. We filmed a “reenactment” ealier, of the day before I first got arthritis. We both had swollen ankles, hers was a sports injury, mine was the onset of rheumatoid arthritis. I was 16. We had been to a gig (to see a band called snuff) and were trying to get the last train home from Euston (23:34). We got to Euston station, both with aching ankles realised our train was in about 3 minutes and we had about a 10 minute run ahead of us. Somehow we made it. I remember feeling sorry for her because her swollen ankle looked far worse than mine and that mine was probably harmless because I hadn’t injured it at all. So we’ve named that day the “Great Euston Run of ‘98”. So tonight, my sister very kindly filmed our reconstruction video. This hospital has pretty long corridors so that was perfect. We reenacted our run in slow motion (I don’t think I can run!) and my sister cringed as we asked her to hum the Chariots of Fire theme and we slow mo ran down the corridor. I’m not sure you’re meant to have much fun in hospital. But I’m going to try and make the most of it. We made the train, by the way.

When the specialist nurse asked “any other questions?” earlier, I told her I was a bit scared of getting scared. Then she asked, what part of it I’m scared about. I said I wasn’t sure, it’s just when I think about it. She said “just don’t think about it, then.” So yes, I think I just need to keep myself prepccupied. The hardest bit is now, really. Trying to sleep knowing I have to get up to get ready for it in the morning and I have to get everything on time. Everyone keeps saying I’m lucky to go first. I guess that gives me less time to worry. Just trying to keep in mind that it’ll all be better in a few months time.

13th April 2011: Ouch

I’m not racing anyone this time. The operation was a success, I was told by one of the doctors. The registra and SHO are on 6 month rotations, so I’m kinda glad I had the funny and laid back ones for my first op. The ones I have this time have changed this week and don’t find as much funny. I think you really need a bit of humour working in this. I’m really happy to see that the first nurse who helped me last time is back. She’s a trainee and left just after my last op to go to uni. But she’s absolutely fantastic and seems like she’s going to be such a good nurse. My anxiety levels were through the roof last time and she absolutely chilled me out. When I was really worried the night before my op she helped get me washed and dressed and things and said “why do you worry so much, how are you ever going to be a mummy” (!) I’ve never thought much about being a mummy, I’ve always assumed I just can’t because of the arthritis. So it was quite nice hearing someone in the medical field say something like that. She also helped me lots on the first evening after my op; I couldn’t eat anything because I felt sick from all the drugs, so they’d taken my meals away. I had woken up at some point in the night, in pain from the hunger, and had no food, so she made me some toast and butter from the nurses kitchen. It’s really lovely to see someone care about the patients like that. There are a few here who are just so good at what they do. It’s really admirable. I’d really like to raise money for the ward when I’m better.

So, so far, it’s going well.

Thursday 14th April: hi(gh)?

Today has been a really tough day. I think all the different types of morphine make me moody or even a little paranoid. I remember that during the Oromorph phase of my last operation I became extremely paranoid about whether the drugs were ok and thought I’d been given an overdose a lot of the time. They feel very overwhelming. I have a choice between being in a lot more pain and being slightly more with it, or be reducing the pain and being very sluggish. I’ve gone for sluggish today but I’m slightly getting back to being a awake right now. I know I get very grumpy when I’m on these pills. I have to keep reminding myself that people aren’t purposefully annoying me or being vindictive and that it’s just this very heavy medication. I’m quite used to the way my regular medication effects my moods, but I’m really not used to this. I just have my last operation to go on. And I know looking back on that one, that I was far too worried, or far more worried and wound up than I needed to be.

Today I got a little upset at a few of my friends. One of them got offended because I didn’t reply to her messages whilst I’ve been here. Another one turned up at the wrong hospital and called me saying he wanted to see me, without checking before hand. (I’m not really in the mood to see people at the moment) I’m thinking to myself it’s lovely they want to see me, but it’s kind of too much emotion for me to handle right now. So I’ve polietly said I’m not up for visitors right now. I find people can often come to see me and just talk about themselves as if my life in hospital is quite dull in comparision to what’s going on in the outside world. It’s quite the opposite though. I think I just have to gage it by not buying into these conversations about other people’s drama from now on. I may lose friends in the process, but that’s fine. Another one of my friends made a very scary comment about how she’s worried I’ll be more attractive after I’m better. This really upset me but I’m not upset with her. I think there’s just some inevitable changes that happen as you go through something this big and life changing and it’d be really niave to think that everyone was totally comfortable with it. It’s tough. Any suggestions on how to face these changes are welcomed. I think a lot of the dynamics in my relationships are going to change now. And I don’t want to be resentful at all about it. I’d just like to not hold myself back from changing after this. A lot of this may not make sense. I’m going to blame the morphine.

Monday 18th April: Stairs.

I have never wanted to hear the word “discharge” in relation to my health so much. I’ve done seven nights here now and although the care is excellent and just really keen to get home. I should be going home in the morning hopefully. The final test of this was the stairs challenge. All I had to do was get down to the physio department, walk up three stairs and walk back down without toppling. I passed this in a few minutes. I also had an in and out of the bath tub tutorial. This took hours last time because I was so anxious so had a million questions for the physios and occupational therapist, that I’d already asked over the course of the week, written down the answers, but was still worried. Today I got my last chance questions over in about a minute. Everyone was a lot happier for this!

So I’ve had quite a hectic day. I feel so exhausted but absolutely amazing. I think, where as before I was leaving hospital knowing I was going to be going through it all again very soon, and that it’d get better then worse again before it could get better, now I just have to adhere to my precautions, be careful do all my rehabilitation and know that it’ll just get better. I’m not half finished anymore. I still have the arthritis but I guess now I’ve finally got this out the way. Perhaps I can start thinking about doing  “grown up things” like finding a flat and sorting out my career.

Throughout all this operation business I’ve told people, when they’ve asked, that I’ve been waiting 7 years to do this, because it was 7 years ago that I first saw a surgeon. I told him I didn’t want the operation, and that I’d make myself better by exercising. Exercise is great, but so is professional judgement. I realised some time this week that these ops have actually been on my mind since some time very close to my diagnosis! I remember being in the adolescent ward seeing my consultant and being told “you’re going to need a hip replacement in that right hip. You’ll need the other too maybe. If you wear Orthopaedic shoes it may slow it down.” I didn’t wear the shoes. I did look nice in heels though, back then.

I don’t regret holding on for these ops as the advancements have changed so much in the time I have, meaning my next op should be in 20-30 years as opposed to 10-15. I also wouldn’t want to ever go back on everything I’ve learnt but going through all the pain before the op. Especially the last month where my op was postponed as it was only because of my op being postponed that I decided to see John, which has thrown my life in completely new directions. I would have got through it without him, but I wouldn’t be feeling this sparkley.

In the middle of writing this, the nurse came over to check my observations. I told her I bet I can get my blood pressure up to 145 over 98. It came out as 117 over 90; not even a little bit stressed. I asked her to give me another go and thought “what can I think I think of to get me stressed?”. I’ve just realised that for the past 12 years it would have been these pending operations! I thought about my consultant team and even that didn’t scare me. I got up to 119 over 90 by holding my breath and thinking of a spider. I’m pretty pleased with that. One of the families just got asked to leave as it’s pretty late now. But it was only just beyond visiting hours. I said to one of the visitors “that’s a shame, it’s nice in here to have a bit of umm…” and she said “life”. Not quite the word I was looking for but it’ll do! Can’t wait to get home and start something new.

Friday 13th May; Bad luck.

I’m having a bit of a low patch the past couple of days. I felt really high after leaving hospital. I felt really grounded and ready to take on almost again. I’ve been really excited about getting back into a normal routine once I was healed and how much stronger I’d be now. Since I got home I find that from day to day I come into contact with people, who for various reasons are low, or upset or depressed. I’m finding it a little hard to shake off. Normally I’d let this build up until I feel totally rubbish but I really wanna deal with this now. I don’t feel it’s fair, given what I’ve been through, to have people take their frustration out on me.

One person started a full blown argument with me, because I was “being quiet”, and accused me of being passive aggressive. I was just happy that whilst they were quite angry my thoughts were nothing. I later messaged them saying I didn’t appreciate being talked to like that, especially whilst I’m recovering. Another one of my friends tonight made an awful comment about my being unable to walk; she took me to a coffee shop and I made a joke about something trivial and she responded by saying that she’d leave me there to let me “crutch it home”. It really hurt. I feel pretty embarrassed to even admit that this kind of a comment came from one of my close friends. I showed that I was upset but I don’t think I gave off the seriousness of just how bad this comment was. And so I still feel really hurt/ wound up now.

I feel as though if I were a stronger person I could just “ditch” such people in my life but this doesn’t seem right. I’ve often moved on from friends in the past by just looking for new ones. I don’t think it’s right to just bin 10 or 12 year friendships over a few comments, even if the undertones of such comments show a lack of sensitivity to a massive part of my life. So I’m quite stuck on this. I think this has been a problem I’ve had for age. It’s definitely a problem I’ve had with comprehending Toltec wisdom; where do you draw the line between ignoring a victim voice in your head and just having a lack of assertiveness. I find being “assertive” on a whole is complex. I can normally confront people easily if I feel passionate about a cause (e.g. disability), and have done many times in the past, but am not great when it comes to taking abuse from my closest friends. I find this comes in all shapes and forms. I feel quite fed up with it and don’t want to be bothered by it any longer. Nor do I want to ignore it when someone quite obviously is disrespectful. This seems to happen more now that I’m getting a bit better. It’s almost as if people preferred it when they could pity me.

I feel quite sad to admit it, but some of the best and happiest time I have lately is when I’m alone. I find that not many people understand much about how hard this year has been for me. I feel quite overwhelmed with other people’s pessimism. I guess for me this is almost a second chance at life and having my youth back, whilst everyone around me is quite miserable at the prospect of approaching their thirties (as if the world ends when you’re thirty). I’m quite fed up of hearing it and quite sick of the fact that other people don’t appreciate their youthful healthy bodies. They seem too busy picking out grey hairs. One of my friends even commented that I had a grey hair and reminded me that we’re getting old!! I really wish other people’s outlooks wouldn’t get to me so bad. I can’t stop them from feeling miserable. I’m just stuck because my normal response is to just avoid whoever it is that’s annoyed me or been rude to me. But I’d rather I could find a way to voice what I felt.

I’m really unsure of how to work this one out.

10 Responses to “Anna’s blog: binning arthritis”

1. Fiona says:

   April 21, 2011 at 8:00 pm

   Hi Anna, glad you are feeling so well Fiona. enjoy home.
2. Fiona says:

   April 14, 2011 at 8:15 pm

   Hi Anna, aren’t people funny ?!! Re :’ You may be more attractive when this is over’ What a bizarre thing to say. Infact I have been quite preoccupied with the comment since I read it. Maybe she just didn’t know what to say so said the first thing that popped into her head – people often find hospitals and all the related stuff difficult to handle and their brains go to mush. I’m so far down the line with John – I have seen him weekly for 8 months !! clearly I’ve got it bad as my mother would say – that being attractive ( or not ) is such a funny comment to hear. All the sh*t that goes with living up to / or not that ‘ attractive’ label is such crap. And causes so much stress and pain and fear. John has a phrase that I believe now and use all the time to great effect – Care but don’t care. In the end it’s all about you and there is nothing in the world wrong with that. However I’m sure for a fact you will ‘ FEEL’ better after the operation which is a much better place to be. Re : feeling grumpy and cross – John and I were talking today and he suggested that ‘bad feelings ‘ were simply bad feelings. So run with them. They will pass as everything does. I am sure there will be plenty of good ones now and in the future to compensate – like raising money for the ward. Anyway, I’m burbling on and I can’t blame the drugs ! keep smiling – as John would say ‘ you are great.’ Fiona.
3. Fiona says:

   April 13, 2011 at 2:31 pm

   Hi Anna, I clicked onto your blog a few mins ago as I was allowing myself a bit of me time in the working day and wanted to see how you were and it was like getting to the crucial bit in a novel – I was cross I hadn’t clicked on earlier. I’m so pleased to hear the operation is a success. Your comment that the nurse said ‘ just don’t think about it then’ made me smile. I read Yapko’s Trancework book recently and in it he discusses language and the brain extensively – he says that when someone says ‘ don’t’ the mind/ brain hears ‘do’ since it is a verb. So he recommends avoiding the ‘don’t’ word or at least using it carefully for obvious reasons – especially with children ! enjoy your hot fresh midnight feast toast from the nurses kitchen. And keep writing – I’ve now got an excuse to click onto John’s site rather than work . Keep smiling Fiona.
4. Anna says:

   April 13, 2011 at 1:35 pm

   Hi Fiona,
   I’m not sure how I didn’t see this comment! That’s so interesting what you mentioned. I’m really trying to work on a few projects that will help others with those kinds of issues relating to disability and especially that kind of “labeling” but it’s so strange; it really is so different for everyone and I can’t ever assume how people want to be percieved just because I have a similar experience. It’s really tough. When I got diagnosed it took about 5 years before I went to the council to get a little piece of paper that registered me disabled. I was 16 when I got diagnosed and my family agreed regisitering immediately would make me feel stigmatised. I don’t think I knew what stigmatised meant then. I’ve often looked back and wondered if I could have avoided a lot of problems if I had got support immediately. Then again I often think it’s nice to hide it on a whole. And other times I think naaaa, let people see it. I’m not so bothered now about what people think (thanks to John) and I’m grateful in some ways for having gone through the socially difficult part of it all and the fact that it got me at such a cruicial point in my life cos I think I probably have a good appreciation for helping people in that way now with social or therapeutic type problems, relating to disability.
   Thanks for reading again. It’s a little morphine induced and boring at the mo I think, but I’ll pick up on writing skills when the pump comes out hopefully. Although, I love this pump!
5. Fiona says:

   March 30, 2011 at 11:47 am

   just to add to my last comment :
   re – ‘it’s really hard to utilise a system that is put in place to help you without it affecting your head.’ I had never thought about it like this. The only parallel that is interesting to me is that a good friend’s daughter had been having increasing problems and eventually the mum took her to the doctor and the end result was an Asperger’s Syndrome diagnosis. Which the mother was relieved at ( since help was quickly on the way – although the syndrome clearly has its issues ) but the daughter initally went into overdrive bad behaviour blaming the mother for the ‘label’ since it was the mother who took her to the doctor. Things have got better recently as the therapy and support has been abundant and is gently improving the situation – but interesting how the daughter saw the ‘ label’ as a disaster and the mother a ‘ way forward ‘ and a guarantee of help from now on in what was for a long time an impossible situation due to terrible behaviour etc. that restricted the entire family.
   I better get back to work now. Keep writing – you are excellent.
6. Fiona says:

   March 30, 2011 at 11:38 am

   Anna I am fasciated by your blog – I know I said it before but you really write so well and make me smile and laugh and think. and sometimes I can hear John’s words coming through. He is such a clever, sensitive and gentle man. I like the idea of lying to your hip – that made me laugh out loud. I guess you can shout at it / curse it / ignore it etc etc what a clever way to deal with it. Brilliant. Fiona.
7. Anna says:

   March 25, 2011 at 3:37 pm

   Hi Fiona,
   Thank you so much for your lovely comments! That’s really nice to know someone likes it. I think blogging really helps to move forward. Even if I’m not quite getting it, it’s good to keep writing out your journey to get some clarity on things, I think. That’s really interesting about your uncle. I think more interesting because most people are quite freaked out by disability so that’s kind of consoling that someone would be curious. I think this whole process has really made me want to do more to raise awareness so more people were curious, rather than avoiding of this lifestyle. Thank you again for reading!
8. Fiona says:

   March 23, 2011 at 8:38 pm

   I have just caught up on your blog from 9th March and you write brilliantly – you made me smile and laugh and also think since I too have read the Four Agreements and broken it down and played with it. I have since bought it for others as a gift. Your blog is a triumph and a clever and honest read – I’m looking forward to reading some more. My uncle was in hospital some time ago and decided to ‘ see what it was like to be disabled ‘ and insisted his wife take him out in a wheel chair – he said the experience was a huge learning curve and not a comfortable one. People acted in ways he had never experienced towards him and he said it really gave him a lot to think about. I was interested to read your own comments in your blog which reminded me of his trip. A different point of view. Keep writing, Fiona
9. Anna says:

   March 19, 2011 at 3:40 pm

   Thanks John! I’m gonna keep going with this one!
10. John says:

    March 12, 2011 at 11:57 pm

    What a wonderful way to celebrate Lent, I love it. Enjoy. John