"Why are you trying so hard to fit in when you are born to stand out?"

I was semi watching a film on TV (my concentration span is fairly minimal...) and heard that quote. I really felt like it was saying something to me and I love it.

I am not pretty, or funny, or outgoing, or popular. I am not a lot of things but one thing I seem to be really good at is not being able to fit in. Its not easy being different for whatever reason (family upbringing, religion, disability etc) and I've spent my life wishing I could just fit in like everybody else. I hated being teased and picked on, being left out of games, not being accepted because I was different, and my self esteem was shattered. So I have spent my life striving to fit in, try and do what everyone else is, and fade into the background. I hated wearing different clothes, the rules my parents had, the responsibilities I had at home, you name it, if it made me different to others then I did not like it.

But no matter how hard I try to 'fit' in, I still end up being different. Having RSD has stopped me from ever being that normal person. I was trying so hard to play this year right, I ended up informing the school and keeping them updated and now I have this weird illness drag out (which has been hypothesized as rsd related), mess up my ability to just study and prepare for exams and sit them the way everybody else will be. Already I have been told to fill out special consideration for all my upcoming exams, something I was really hoping to get through this year without having to do. I wanted to prove that I could do things just the same way as everybody else and yet again I feel like I am so far behind and the only thing lef to do is claim impairment (which has been explained to me is warranted despite me thinking otherwise).

But maybe I am just not supposed to be that person who 'fits' in, and maybe, just maybe I should embrase being different and find confidence in who I am as a person and stop trying to be like everyone else.
From today I am going to make that quote my thought to remember. The thing I tell myself when I am too scared to speak up, too scared to have an opinion, too scared to stand out and be different.

Its not the people just like everyone else who gets remembered...its the ones who stand out, the ones who are different..they are the ones who get remembered.

Umm, yes I do know I'm just a bit special...

I'm talking to my Mum on the phone and its getting late. I need to find out what the time is so I look for my cellphone (its my clock...). Its not on my bed, its not beside me on the table where I usually put it, I shift my laptop to see if its under it, I shift the notes on my bed to see if the phone is under them. I get up off my bed to see if I was sitting on it or if it got under the duvet. I'm frantically looking on the floor and everywhere for it because I rely on my cellphone for a lot of things, and I still cant find it anywhere. My Mum tells me the time (I'm still on the phone to her) and I look in the mirror...

I'M TALKING TO MY MUM ON MY CELLPHONE

She laughs and says she thought I was on it.

How crazy is that? Seriously, my brain is not working well at all

She's on my side

I have an ally and it feels so good knowing she is on my side. The associate dean actually said that she knew I had what it takes to do this, but my body was being difficult just now.
She was really nice and understanding...I felt so bad that I was presenting with yet another problem, but as she said, I couldn't do anything about the free fluid and being ill and how it affected me and that it was important to listen to my body and rest if that was what I needed to do. That I cant do any more than I am just now and she realises that and also realises that I dont like the situation so I am doing as much as I can.

She is going to try and sort out the missed terms test but said it is not something that gets resat next year so I'm not sure what will get done about it. Its only finals that get offered as specials at the beginning of the following year. I'm also to fill out special consideration for all my upcoming practicals and exams because of how my preparation and performance will have been affected and she said if I do not pass anything then it should be taken into consideration and not affect terms (rhis round most of them are internals for full year papers, only one is a final exam). I'm hoping that I will scrape through but just now I'm not sure I have a proper handle on anything, fingers crossed thats just a feeling and I'm not as behind as I think.

So thats one meeting down, yet another meeting tomorrow with the disability office to see how they can help me sort out this mess. I'm hoping they have a good plan of attack to help me wade through all the missed classes etc. I'm also hoping that I dont cry...I always end up crying in these meetings and I feel so weak when I do, and that I must look pathetic. I just want to show them I can do this and its hard having to admit to needing help when you pretend to look so normal to the outside world. Its like a double edged sword "I'm fine, I'm fine...but I need help..."

I feel fake

Offer accepted

Yay for people who can realise when its a good time to take over. I spent quite some time on the presentation last night and this morning, its all set just to have the other's research added and then be referenced accordingly. We got together tonight and I was expecting people to have their contribution all ready to just add but it wasn't that simple. Luckily one of them offered to take over as he could clearly see I was struggling to even talk by that point. He is now collecting the remaining data and will add it to the powerpoint poster ready for us to give it a final look over in the morning and hand in by email. One of the others has now taken over writing the script for the presentation too, he's taken my skeleton idea and sounds like he has great plans for it, its going to be quite fun!

I am still feeling particularly unwell and washed out. During a lecture this afternoon I ended up laying down because I thought I was going to pass out. A friend made sure I made it out afterward and left me resting after convincing me that missing the next tutorial was what I NEEDED to do, and suffering though it (or making a spectacle of myself in it) was unecessary. I rested for the 2 hours and then dazed through the last lecture of the day before our group meeting tonight.

I found out that because I missed the Pathology mid term last week I am most likely going to have to sit special exams beginning of next year but we will see. I have to meet up with the associate dean again now due to my time off and hopefully we can sort out the mess I am in. If I was a bit behind before, now I am so behind I dont want to think about it and semester exams are just around the corner.

I'm going to bed, I am so so tired and its early morning starts every day of the week this semester. I hope others are feeling better than I do just now.

Superhuman I am not...

...so why do I take on more than my fair share? Why do I continually say I will take care of things when its clear I'm having trouble just being here?

Because I need to be in control, in charge; to make sure things are done to my standard and I'm not up for compromise, I'm pathetic.

Its after 7pm on a Sunday night, I've just taken the whole last week off uni to try and get better (which I don't seem to have achieved), my foot and leg is yelling at me (its pretty high on the pain scale), muscles in my leg are spasming uncontrollably, my thigh is not even liking the lightness of my trouser touching it, my back hurts, my head is pounding I can hardly focus and I'm physically and mentally exhausted... and I'm sitting at uni organizing a poster presentation.

WTF??? how did I let myself?

Yes the other's have contributed, yes they have done their part in this but I took it upon myself to put the whole load together, to spruce up the sample poster, to make it ours and original. I'm also coming up with the 'script' for our presentation to go with the poster. Why can't I trust someone else to organise it? Why couldn't I have given my research to one of the others to put it all together? Why? Because I need to control things and I am a born organiser (I remember being told this in primary school...how good I was as organising and making sure things got done and done well), I have idea's and want things to be the best they can be and I think I can acheive that....but this would have been a good time to decide that passing was good enough, I dont have the energy or the brain power.


I just realised I'm not superhuman...but its too late.

I hate hospital...

Once again I found myself in hospital over the weekend and through till Monday (not due to a fall this time thank goodness...)

I had awful tummy pain, felt very sick and was very unsteady on my feet. I didnt know what to do, so I rang Jo and she said to ring the healthline and see what they said, they said to go and get checked out. I then rang my Mum to see what she thought I should do (seen as it was Saturday evening). She said to follow the advice I had been given and to go to the ED, so my Uncle kindly took me.

I got a bed instantly which was nice because lying on my side curled up was the least uncomfortable position and I lay there for about 3 hours before being taken to be assessed by a dr. They were pretty busy dealing with drunks creating a scene and I lost count of the number of drunk students who had put their hands through windows! They said thank you to me for waiting so patiently lol.

It was possible I had appendicitis seen as I had most of the positive signs but it could have been several other things too. I got assessed by the surgical registrar and it was decided to admit me and just keep watch over how things progressed before anything drastic happened, (I was not keen on the ides of surgery one bit!). The ED dr did my IV and she was amazing, first time and in a place that wasnt too uncomfortable too!

Sunday I had an ultrasound which showed free fluid in my abdomen and I was told that fitted with my presentation so just to keep with the pain relief and antinausea and see how things went and I was then allowed to try and eat.

I couldn't eat much more than a spoonful of the soup I got but I had been kept hydrated with fluid and was drinking as much as possible. I had a ghastly night not being able to sleep due to hot sweats and my hands and feel swelling up so I couldnt make a fist. Due to the weekend, the hospital pharmacy wasnt open so they didnt have all my medications and due to not having brought them in with me, my med schedule was all messed up. I dont think that helped my pain levels or the side effects I was having.

Monday I was dealing with the pain better by then (you kinda get used to things you know) so I tollerated the surgeon touching my tummy better although it was still pretty painful and straight after I puked up the limited contents of my stomach. And they decided that seen as things hadn't progressed any further, no surgery was required just now (phew) and I could go home (double phew!).

When the house surgeon came to talk to me about discharge rx and I said I needed pretty good antinausea meds cos they had been giving me a double combo to try and control things he almost changed his mind and made me stay. Thank goodness I was able to talk him into letting me go home. I knew I had no chance of getting better in hospital, I couldnt even stay still due to the pain, no sleep, heat and med mess up. I'm just to go back in should the pain get really bad again I (fingers crossed it doesnt cos I didnt deal well with the added pain and nausea).

I've been given the week off classes to recover as they said I would need the week. Initially I thought I would bounce back but I'm finding out just how washed out I am and think I will need that week. Bad news is I had a terms test tonight worth 35% that I am missing and I dont want to think what a mess that is going to turn into but just now I dont care.

I do have to say though that despite the amount of pain meds I am currently on, they still gave me morphine for the pain and didn't treat me badly like I dreaded. I have heard horror stories of people with RSD going to hospital and being treated like drug seakers etc.
The surgical registrar on Monday did sound pretty surprised at how much pain I must be in when he saw what drugs I'm on but I think it was because he hadn't come across it before and he was still nice about it. The consultant wanted to know a bit about what was affected by RSD but he was also nice (we think he looked after a friend who also has RSD when she had trouble recently). So overall I had pretty reasonable treatment appart from the pharmacy thing.

The thing that was most difficult to deal with (appart from the heat the hospital always seems to be) was the number of visitors the girl next to me had! she would have 3 girls all come in at once and they made so much noise, I felt pretty lousy so that gave me such a headache cos I couldnt get away from it. And they kept coming, as soon as one lot left another lot arrived-I started to wonder just how sick that girl really was (was that bad of me?). Anyways I am home now, eating in small amounts to try and get my system used to food again and resting a lot. I am so wiped out and drained. Just walking to the bathroom and I am shaking which is pretty embarrassing! But I'm starting to feel better, which is good, just taking it slowly.

Thing is though, I never thought to ask how I got free fluid in my abdomen and what it would be...obviously it wasn't supposed to be there so I wonder how it got there and whether its something I should be conscious of and if it happens again does that mean anything?

Part 3- Love is...

Love is patient, love is kind.
It does not envy, it does not boast, it is not proud.
It is not rude, it is not self-seeking, it is not easily angered,
It keeps no record of wrongs.
Love does not delight in evil but rejoices with the truth.
It always protects, always trusts, always hopes, always perseveres.
1 Corinthians 13:1

How I love that passage, it is such a simple verse but very powerful.
I think today is a fitting day to ramble about this word and what it encompasses. It is more than just meaning, it is a word that has such depth and such strong emotion because without it there is nothing.

Mother's day is all about love, without love this day would be lacking, because it is a Mother's love that is so strong as to lift the hearts of all even when one is close to despair. She nurtures love in her children, teaching them the simple ways of love and by her actions shows the sacrifice that love has to make at times. Love is not always easy, it is not always noticed but when it is true, love is everything.

I feel loved...
...my friends and my family wrap a thick coat of love around, me and it is this shield that protects me from mortal danger when I fall, their love is keeping me alive. When all else fails, love stays strong, love conquers all. I am nothing without love. Love is seen in people's actions, is heard in their softly spoken words, is felt in their all-enveloping embrace and comforts you so....your heart can relax, calmed by the knowledge that you are safe in the arms of someone who loves you.

It never ceases to amaze me just how much love people can show, and how many people their love can be shared with. I think that the more love you show, the more love you will have to share and the more you will be loved in return-its an everlasting circle.

Take time to share your love, say those 3 words to the people who matter to you...they may be simple but when said with meaning, they move mountains.

Mum, I LOVE YOU.

and all you people around the world who show me such love....I LOVE YOU TOO!

Water is for drinking, not breathing

My abs and all my accessory inspiration muscles ache so much now due to how hard I had to try and breathe after trying to 'breathe' my water.

Our tutor is really funny, in between being maddening and getting WAY off track in class. But it doesn't pay to take a mouthful when he is cracking jokes-I learnt that the hard way today.

And the worst thing was I couldn't really tell people what was going on cos everything I tried to talk I felt so dizzy I thought I was going to pass out. I had to take really tiny gasps of air or else everything seemed to close completely and I couldnt breathe at all.

I'm fine now though, just took a while for my breathing to get back to normal. I think I may have actually got some water in my lungs and that triggered my epiglottis to close in reflex or something. I certainly dont want to do that again anytime soon though it wasn't fun at all.

Spread the Word!!!!

Part 2 Give me Strength

But they who wait for the LORD shall renew their strength; They shall mount up with wings like eagles; They shall run and not be weary; They shall walk and not faint. Isaiah 40:28-31

Strength is not how hard you try, but not giving up in the face of adversity...

Strength is what makes up pick ourselves up and carry on despite...

Strength is what lets you forgive someone when they did something that really hurt you...

Strength is what makes you take that leap when you are scared and not sure of what you are getting into...

Every time we face a new fear it makes us stronger...and teaches us more about ourselves too.

It takes strength to get up in the morning, strength to carry on when the going gets tough, strength to be you and not try and be something you aren't.

Strength is not just about how heavy you can lift or how long you can hold, but how you battle on each and every day, how you survive to make it to the next.

And I'll leave you with this quote which sums it up quite nicely I think (sorry I'm not sure who wrote it):

“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”

Part 1 Have a little faith in me

As promised...Jo's 'Labour of love' and a reflection to go with each one. There are 5 in total that I will ramble about over the next wee while. These mean a lot to me and I know that each time I set eyes on them I will be reminded of her friendship and also of who I am, in her eyes at least.

"If you have faith as small as a mustard seed, you can say this to a Mulberry tree, 'be uprooted and planted in the sea' and it will obey you" Luke 17:6

Reminds me of that song by John Hiatt just now and I think we need to remember to have some faith in ourselves too (or at least I do).

Faith defines so much of who we are and I'm not just talking about religious faith, although that does come into being for a lot of people (including me).

Faith is being confident, trusting in something, someone. Faith is knowing, faith is believing...

Faith is what we need to hold on to, despite the world crumbing around us, despite everything we know or understand disappearing.

Faith is something dear to hold in your heart, something you know without knowing if that makes sense.

Our faith needs to be strong, to help us to see in the dark. When we need a hand to hold onto, faith reaches out.

Faith is the seed in our soul that grows into beautiful things, fills our eyes with brightness and hopefully never falters.

Faith makes all things possible, faith has no limits...

Share in my faith and shine with overflowing goodness. Stand tall and have faith in who you are, believe in yourself, each and everyone of you...as you help keep my faith strong and together we will move mountains.

Say it like it is...

"XXX and I would like to catch-up with you to see where things are standing at the moment."
"If you would like to, you are welcome to bring a support person. We just want to make sure that strategies are in place to get you through the year, whilst keeping yourself and your patients in the clinical setting safe."

Oh crap...I thought I had been spared this and truly this year has been going much better than last-or so I thought.

Being summoned to a meeting with these two people (associate dean and undergrad dean) is not to be taken lightly and as I thought I had sorted out the mishap that happened just before Easter, I wasn't expecting it (though I was hiding).

Jo came with me (thank you a million times) and it was because of her presence that the meeting actually had a positive outcome (and we both agree it was a pretty intense meeting). I am so afraid of them deciding I am too much of a liability that I haven't been able to tell them the whole truth. I think at the beginning of the year I just said I had crps but didn't even explain how it affected me.

Jo 'laid it on the table' how it affects me on a day to day basis, how its unpredictable, how its physically draining but also that I can recognise when I'm not at my best.

One of their biggest concerns is safety and potential threats to safety; patients, staff members, other students and mine. I have been known to fall, to faint and apparently other students have had concerns about leaving me on occasions. Staff are watching me very closely in classes. I totally understand and I know what a big responsibility the school has in this respect...I just think that its so unfair that crps is doing this to me, creating this problem.

They wanted my permission to inform staff who would be in close contact with me and then it was decided I should put what I wanted them to say on paper which is fair enough. It was suggested something like "X has a health condition and it can affect her in XYZ way."

I got home and started thinking...I am sick of hiding, sick of pretending, and up until now have been a bit scared to say things to tutors etc about how I'm feeling or where I'm struggling. I dont want to do this anymore and its much better that people know in the beginning so they can help. According to them, as everyone who teaches is a health professional themselves they should be able to understand (I really hope so) so by being informed it should potentially make life easier all round.
I thought, IF people need to know anything, then they are going to know the TRUTH...not just a tiny part of it. So I wrote a letter...it has turned into a page, but thats not much really. I am going to give it to the Associate Dean this morning and explain that I want people to know the truth. So, anybody who she deems it necessary to inform, they are to receive this letter from me. Hopefully I can feel more comfortable going to them and asking for help or saying that I don't feel so good and it will stop me pushing myself to the limits as I have been up until now.

I'm not certain whether they are going to be ok with this but I hope they are...its how I want it done if its to be done at all.

I just hope that its not used against me or creates more problems.

I also recognised for the first time, my attitude towards any problems I have is not the right one, something happens or I find something difficult and instead of looking at it practically and thinking about how it could be made easier...I tell myself its my problem and just deal with it. Now that they have specifically asked me what they can do to help I have started thinking of practical things they could actually do to help me and if they really do want to help (and I think we both agreed they do seem to want to) it will make life so much easier!

Oh, and heres the letter I wrote...


To whom it may concern:

You are getting this letter because you will be teaching me on some level this year and I would like you to know a bit about me in order to make the year flow more smoothly for everyone concerned.

I have Complex Regional Pain Syndrome (CRPS, formally known as Reflex sympathetic dystrophy) which I am hoping you will know a little bit about. I have constant pain, allodynia, hyperalgesia, burning and freezing cold pain as well as muscle cramping, stabbing pain, colour changes and abnormal nail and hair growth.

I currently have these symptoms in my right foot, leg and thigh, with mirroring symptoms showing in my left foot and ankle. This is making some everyday activities a challenge for me. It can affect my ability to stand still or walk for long distances, concentrate for long periods of time and think quickly. I find long classes and hours with no break tiring and not easy. Sometimes I feel nauseated due to the pain and fatigued due to the chronic lack of sleep as CRPS also affects the limbic system, causing sleep and short term memory problems. I do not tolerate heat very well and this can cause me to feel very hot and feel faint.

I am on a combination of drugs to help with the pain but these also have side effects including concentration and memory problems and I tend to loose my voice due to having a dry mouth (so I am always having to sip water). I have good days and not so good days although am unable to predict when these may occur, but I have learnt how to recognise the signs that mean I am not so good and when I need to take extra special care.

Despite all this, I really want to make it through to graduating as a physiotherapist. I do work hard and am putting a lot of effort into showing I can do this and I believe it is still an achievable goal for me. With the support I need and that the school is offering me, I think that I am still capable and that I will be able to show I can meet the competencies required.

I know how important patient safety and other’s safety is and the responsibility the school has in relation to this, so it is important that everyone who is in charge of me knows my background in order to offer any support I may need. I don’t want special treatment and I am scared about how this is going to affect the way I am treated in regards to ability, but I do understand I have a health condition that requires people to know about it. And because you are informed I will feel more comfortable asking for help or letting you know if I am feeling unwell.

Yours truly,

Spreading like wild fire...

I seem to remember that bush fires 'jump' from one side of a road to the other and carry on destroying everything in their path...I think I am discovering that crps is just like that (jumps from one limb to the other).

Lets just say I think I am experiencing a mirror type spread. My once fondly called good Left foot seems to have decided it felt left out and is joining in on the game of crps.
Burning hot pain, allodynia, exact mirroring of the red patches on my feet, and up both legs the bright red stops at exactly the same height, I swear its just like looking in a mirror-even my Mum was impressed (and then asked me whether this was good or bad...). I've also been experiencing my share of pain related nausea, so much so that I have not been able to control it (puking is ghastly, I hate the whole feeling especially when you don't feel relief after).

I say that I'm not happy about this but in reality I'm emotionless, I think I automatically shut off all feeling before I had a chance to think-protection mechanism perhaps?
Anyway, there is no point in being angry or upset or stress about it-that doesn't achieve anything.

It might just be some kind of flare...I might have unsettled things in my latest fall, maybe its because of all the stress I've been subject to recently...I could make up reasons till the cows come home-and that's what I plan on doing for now. Its really too early to say (I'm telling myself, well its only been a couple of weeks or so, not long enough to have any idea). I'm sure things will settle down soon and Lefty will decide it doesn't like copying Righty after all and go back to being normal...I'm sure that's the case...

...but lets just say, umm, well I don't quite like it and am trying very hard not to think about the possibilities.

But just now I am pretty gutted that I can't see either my pain specialist or my crps physio, neither of them are seeing patients my ONE week back home for uni break.

Nothing like a good kidnapping to set the world to rights...

First of all I want to say, last week was a particularly hard week but that happens, and its going to continue to happen because that's how life goes. I just hope that with practice I get through them a bit better than the last one went. Thank you all so much for the support you show and continue to show me. Knowing I have people near and far who care about how I am going brings a smile to my face, and well, what is life without smiles and friends?

Come Friday I was about done with trying, frankly I was pretty tired and frustrated with myself, somehow being 'needy' was unacceptable. I went to see my student adviser K and she really helped me sort out a few things that had really been messing with my head. Once again I feel justified about needing help and think I can start asking for it again. I also semi believe that I am a 'coper', I was really worried that she would think I was not seen as I pretty much end up in tears every time we meet up.
A surprise was waiting for me after my appointment (actually I think it tickled a few innocent observers lol), I was 'kidnapped' by a person kind enough to send me several messages when she thought she may have missed me (but no, I spent longer with K than expected, but that was because I really needed to talk) anyways meeting me in reception was Jo who quickly hurried me off to catch the bus, and thoughtful kidnapper that she is, even paid for my bus fare. We took the bus to her hideout and I got to relax for a whole afternoon.
Those hours in the sun, away from the stresses of uni, home, everything reminded me how to relax again...something I have been needing to do for a while I think.

That wasn't all the kidnapping involved...lunch at some point, photo journeys and a pretty huge surprise in the way of a belated birthday gift too. One so special that it will involve a few posts all of its own over the next week or two (I forewarned you) as I have a bit to say about them.

The world is now a brighter place once again (and being locked out of the house for over an hour Friday night didn't dampen my happiness either).

Jo
You are amazing, a wonderful friend, around you I feel safe, I feel like my load is lightened and I know I don't have to play pretend. You are like the big sister I never had, just being with you and knowing you are never too far away makes me not feel so alone. You make me stronger and a simple hug from you scares away the fear that sometimes threatens to overwhelm me. You never have expectations, we don't even have to talk but just being in your presence creates a certain calmness that is hard to describe.
I thank God so much for sharing you with me, I know that your life is pretty tough on so many levels and the fact you can still share yourself with me, the way that you do, well there are no words that describe just how much you mean to me.
May God be with you
All my love
Butterfly