I'm a 3rd year!

After the weekend I start back at physio school-seems unreal! Today we had our prelim lecture, an intro into our papers and getting our complex 3 week turn about timetable. I reckon its going to take most of the weekend to get my head around it! Down side is we have 8am starts every day of the week but it looks like some weeks at least my lab group gets Friday afternoons off.

This year we step up with our clinical placements, with 4 three week rotations consisting of 3 half days a week as far as I can work out. I will learn more as next week progresses.

I am glad I had such a relaxing break, I needed time to let my brain rest and to de-stress completely. I also made a lot of progress that would have been difficult had I been working, but now its time to switch on the brain and get back to work-I hope my brain holds up!

Untrue

I shed a tear for you, a river flowed.
You never saw the care I showed?

I wouldn't hurt you, why cant you see,
You were so very dear to me.

I opened up, I showed to you,
Behind the mask, real me to view.

I feel confused, I cannot say
why have I this price to pay?

What changed? What made you turn?
I have so very much to learn...

The things you said, they hurt me so
My heart you shattered with one blow.

I wish my grief would go away
You are not worth the time of day

I have wounds, they will not heal
Life is cruel, I know the deal.

I cried for you, I shed a tear,
This just shows real friends are rare.

My brain passed the test!

You may remember, a few months ago I had a bit of an incident at the pool after not sleeping well for a while (I wrote about it here). Well I had forgotten the ED Dr had referred me to Neurology until an appointment card arrived in the post.

I was pretty anxious about the whole deal, the ED Dr mentioned the possibility of it being a seizure and that I might have epilepsy and that was the last thing I needed, I was terrified I would lose my license or something!

Well I had a sleep deprived EEG and then yesterday I saw the Neurologist (who was actually running early would you believe!!). One of my good friends came with me which was very helpful as she had been present when I had keeled over.
He asked me questions I had trouble answering (I dont really remember that evening at all) and then did a neuro exam (which was as normal as it can be in a person with CRPS-but please would could you actually register I have PAIN and be gentle with my hurt parts?).
I am happy to say that I have a brain ;) and he said that it sounded nothing like a seizure and although my EEG basic report showed some abnormal activity he attributes that to the medication I take for the CRPS pain rather than anything else (thank goodness). The episode was most likely due to extreme fatigue and he did mention my previous head injury.

He is ordering an MRI of my brain to be on the safe side, just in case they have missed anything that could be hiding but I'm sure they haven't. He will also let me know the final results of the indepth EEG reading when it is ready. I cant say how relieved I am about the outcome of that appointment, I'm sure the MRI will be fine and then I'll be all good to go and I promise to look after myself better this year-I really want this year to be much better all round!

The importance of friendship and support.

Valentines day seems a good a day as any to ramble about this, I was going to because of something that occurred yesterday but was good timing.

I often hear people talk about how once they had an accident or were diagnosed with 'whatever' and were no longer able to do all the things they used to, they ended up losing all or many of their previous friends. I can hear you all saying 'yes, that happened to me too..." Some people are even unfortunate enough to get pushed away by family as well.

Friends and family are an important part of psychological well being, they are there for support, guidance, reinforcement, motivation, nurture, trust, interdependence, sharing experience, building confidence, socialising with, heck even to argue with.

Losing friends and family is very hurtful, it affects a persons self confidence, self worth and outlook on life among other things, they can begin to feel unloved. This can have devastating consequences in some situations. Being isolated is a lonely and scary place to be, more so if you are having to adjust to a life that is different to how it had been.

Supportive friends and family help keep you focused, keep you smiling, give you something to laugh about, someone to share with. When you have suddenly lost a part of who you were, having friends keep you grounded and remember that you are still you, are priceless. Without my network of friends I wouldn't be where I am today, I wouldn't have people to turn to when things fall apart, when something didn't go to plan or when I had a bad day, they are who help me pick up the pieces. As someone with chronic pain, having friends who understand the yo-yo that occurs on a day to day basis is the difference between failure and success.

Yesterday I had a conversation with a person who has touched my life in a very special way. We don't see each other often but I know that no matter how much time in between each meeting he will always be there for me and I will always be able to count on his reliability. In fact we were talking about something and he told me that I would always be able to count on him and that he wanted me to know that he would never let me down. That meant so much to me, just to have him realise that I needed to hear it outloud because I have been hurt so many times before. He has been like a father to me in many ways, someone I can talk to and get advice from, share the silly stories that are my life without fear of being judged. I am a vulnerable person, I still have feelings and I still get hurt despite what I tell myself.

So today I just want to say thank you to each and every one of my friends, the ones who have stuck by me through thick and thin, not everyone did so you have shown the stuff of true friendship. All my new friends who I found some way or another along my journey of rediscovery, you have befriended me for who I am, not who I was and that means a lot. To each and every one of you for being there for me, through the good times and the bad, for giving me a reason to get up in the morning and not giving up on me. You have shown me the real reason of friendship, I just hope I am able to show that to you.

“In poverty and other misfortunes of life, true friends are a sure refuge. They keep the young out of mischief; they comfort and aid the old in their weakness, and they incite those in the prime of life to noble deeds.”-Aristotle

Hydrotherapy update!

As you all know, I have spent my summer break working diligently in the pool to improve function, strength and endurance. Except for a few weeks here and there, I have pretty much been at the pool everyday with weekly check-ins with my physio.

Looking back at where I was mid November and then looking at where I am now 3 months later, I feel amazing! I have worked really hard to improve everything and my physio is really happy with the effort I have put into getting to where I am. It wasn't easy, in fact the first few times it was so hard I cried but now I can spend an hour in the pool and cope very well.
I started out very small, not even able to get to half a length of anything but now I can do repeated lengths of even the more painful movements. And now can even keep up with a moderate to high intensity aquafitness class!
I am swimming lengths, can go on forever just kicking and go faster than some people swimming freestyle. When I am hopping and running in the pool I have symmetry comparing left to right and apparently I make it look really easy! I have worked hard and now have improved my right hip flexion, something I have struggled with since my surgery 2 years ago.

I really like working in the water, it decreases the pain flaring compared to working on land and I find I can push myself much harder in the water as a result. Also its useful, you cant fall and hurt yourself in the water-just end up with a mouthful if you loose your balance! I'm able to control the dorsiflexion at my ankle now although I still don't have comfortable range, I'm sure that will come. I can walk on my foot properly now whereas before I was walking on the lateral side all the time. I have also pretty much got rid of my limp, it only comes back when I am really tired and in lots of pain. This is super news for me as I have had issues with this for so long now that its like I want to celebrate loosing my limp!

I had my last physio session on Tuesday to work out a game plan for the coming university year, around my studies, I am going to try out ballet, go to an aquafitness class, fit in another pool session and a walk on the beach each week. Comparing it to what I did last year it seems daunting but I need to keep up the physical activity to improve my confidence that I can do this. It doesn't matter if some weeks I don't fit it all in but it is something to work towards and you know what? I cant wait to go back down and start! I have many coping mechanisms put in place and lifelines if I need them, but I want to see that I can do this on my own, I am an independent young woman and I dont see why I cant with the help and support of my family and friends.

I really recommend trying out a warm water pool if you can, its a relaxing environment where you can push yourself and the pain flares are not quite so bad. The water supports your body and decreases the amount you are weightbearing which can be helpful while creating a certain amount of resistance which makes your muscles work. It can be so fun too, makes therapy more like a game than hard work and that has to be a plus!

A look at acceptance and chronic pain...

I want to send you over to a blog I read if you have some time.

Healthskills has a post up about acceptance which I found very insightful and maybe you will too. There is lots of information and relevant studies to further your understanding on this blog and I think I learn a lot from reading it, although some times I dont fully understand it, I certainly try my best. The lady who writes this blog works in a pain management clinic and I hope to meet her next Monday when I go for an 'observation' day!

All dressed up...

Here is a picture from the Saturday night party, there will be more at some point as photos were taken all evening, but I wanted one taken on my camera that I could have now. Photos have become very important for me somehow, I think its the rarity of getting dressed up and also needing photo's to aid my memory. I got so many lovely comments on the night that this is a good reminder for me that maybe I am pretty...I need that boost of confidence.

It never ceases to amaze me how good we are at hiding pain...I look perfectly fine, no-one would guess that I had just fallen, or that after a day and night of dancing I was exhausted and in more pain than usual. And we all look like this, just because we are so used to it.

All danced out

After a shaky start, I managed to survive the whole dance weekend albeit with pacing, others looking out for me and pig headedness.

We had pretty hot weather and the building didn’t have air conditioning making for a pretty uncomfortable environment at times, but that didn’t stop everyone’s eagerness to learn new dances. I cant remember how many we had learnt before morning tea, possibly 4-5? That’s plenty for a brain to learn and then coordinate the body into dancing without messing up too much. They weren’t easy, involving chains, couples and various direction changing throughout. I absolutely loved the music and the atmosphere created by about 50 international folk dance enthusiasts.

Then after morning tea the crunch set in, increasing heat and lack of fresh air starting taking its toll on me. My head started hurting, I felt like the room was spinning, every time I moved it was worse and I felt like I was going to faint. People said I looked shocking and white as a sheet, not well at all. I went outside to get some fresh air, hoping to feel better because I was not happy about missing out. By lunch time I had our resident doc on my case lol, he had been informed by several people that I was not looking my best. Tony is lovely, he has shown interest in my ‘health issues’ since before I got rsd and has followed my progress along the journey always keen for updates whenever I am back home. He told me to eat lunch and then it would be wise to lay on the grass outside under the tree, the last thing we needed was me out to it on the floor and I couldn’t disagree with that! I ended up going home early afternoon which was a shame but I really didn’t feel well. I did go back for the Friday night party, stayed a couple of hours but only danced 2 dances.
Saturday went a lot better, we worked out that I probably should have had more than just water to drink (a few years ago a dr told me to drink powerade a sports replacement drink as I get low blood sugar and low blood pressure episodes very easily), so I took a bottle of full strength powerade and lasted much better although that afternoon I started feeling unwell again.
I went home part way through the afternoon session to rest up for the gala dinner and party as I really didn’t want to miss out on that and also wanted to be able to enjoy being there.
Saturday night was amazing, it was our groups 30th anniversary and rather special. How proud I felt to be part of it and able to dance, apart from a slight mishap near the end of the evening when I was rather tired, it was fun and happiness. Despite the pain during and after, it was worth every bit. How glad I was to be there and even stay till the end, I even made it for the Sunday morning revision sessions too!
I am pretty shattered now, I had such sensory overload that every part of my body was so hypersensitive I could barely stand clothes anyway. So, I’ve been taking it easy, letting my body recover because just as it is important to push, it is also important to give it time to recover but you cant wipe the smile from my face  A few months ago this would have been impossible but it just shows you what a good handle on pain management and a bit of hard work can do!

Crazy fun here I come....

I am about to go off to the first day of a 3 day jam packed dance workshop weekend!

Today its 9am-5pm (with a less than hour break for lunch) of dance workshops, information says a sampling of European dances especially from Russia in the morning and then Bulgarian dances in the afternoon. I am both excited and nervous...I have prepared as best I can, meds, lignocaine, TENS, more meds, good shoes, snacks and I have promised myself that I wont try and pretend I am fine...if I need to sit out and just watch so be it, I will listen to my body.

We also have a party tonight (as well as tomorrows workshops, a gala dinner and then another party and then revision on Sunday morning...does that just make your head spin like mine does?), whether I actually end up going tonight is another matter, I am just staying cool, calm and collected and if I don't well thats ok as I want to be going tomorrow to the big dinner and dance party.

I am slightly nervous but people keep telling me to be positive and I'll be fine...how come being positive automatically means you will be fine? I can be positive all I like and still not get through simple tasks some days, just shows they dont understand really what this is like for me. BUT I am positive all the same, positive that I will enjoy myself to the max and have loads of fun, but I'm also positive that I wont push myself too hard to the point where I am prone to have an accident...that is the last thing I need lol!

I am prepared as much as I can be, so now I just relax and enjoy myself! Take care.

The good news.

Which is still good news thankfully, though the other night I thought it was becoming bad news very fast lol.

I went to see my pain specialist on Saturday and after a discussion it was decided to go ahead and try out some peripheral nerve blocks. Because of my recent fall and the pain spike, this should hopefully calm everything down nicely...hopefully.

He injected anaesthetic and cortisone into the saphenous nerve and popliteal nerve at my knee, a very simple procedure and not that painful at the time (though my knee is actually still sore from one of the injections 3 days later!). I got almost a day of initial pain relief from the anaesthetic and have been told that the cortisone may take up to 8-12 days to have an effect. Fingers crossed it does as my physio has made it sound like heaven!

I'm still very sensitive to touch of any kind so he said to stop the capsacin cream and just use the lignocaine and see if that helps with the shoes and socks problem. I like this idea because I was having a lot of trouble tolerating the capsacin. I said I really need to be able to wear my shoes (for long periods) before I get back to uni and he agreed.

I also found out that having them fill in the forms for the tramadol will mean that I wont have another review for a whole year! I am so relieved that I wont have to find the money to pay for them.

I have another appointment for just before I go back down to uni, so I can iron out any concerns I may have which is really helpful. I do like how he is good at knowing how things are just from how I act, I find it so hard to actually say out loud how things are as I feel like I am complaining, though I do know I need to get better at this, its not fair making him work it out.

So, all in all, several good things:
A good pain specialist visit.
A hopeful block
And a rx for more tramadol-thank goodness as it was worse than I imagined without it.

I'm ready to cry...

and really its pathetic of me lol...
but the country music the neighbour is playing at MIDNIGHT is so loud I cant sleep despite the fact I am so over tired just now.

And also my good news is turning into bad news before I even post it as good news, that is unfair too...

I just want to get some good sleep-is that too much to ask just now?