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