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?

Situation resolved

So with the help of my lovely physio I am now back on tramadol, with enough to tide me over till my Saturday appointment with the pain specialist.
As soon as she saw me this afternoon she knew all was not right and was on the phone to organise an interim supply.

Apparently part of my symptoms, the not being able to keep still were withdrawal symptoms-whoops on my part. Apparently I am on enough that its not a good idea to go cold turkey.

One thing it did prove though was I do need the meds, so it wasn't all for nothing-and I dont want to do that to myself again!

Todays physio session was focusing on pain relieving strategies so that was also helpful. We worked out the best things for me to do in the water to relieve pain when I am in a flare. All I can say is thank goodness for people who are there to help.

A+ for dumb idea

Hello! My name is stupid…

Ok so I may not be the brightest cookie…

Running out of meds was NOT my brightest idea…

Gee I guess if I was wondering whether the tramadol was helping or not I have got my answer, I want some now, I cant sit still due to the horrid crawly, intense ‘I cant sit still’ sensation of nerve pain.

I tried my TENS, mirroring, trying to sleep was a nightmare, I couldn’t even lay still but eventually I cried myself to sleep. Yes, I am ashamed to say I cried a lot of tears…mostly of frustration and telling myself off for getting into this position, but also in pain. This is where having a room of your own is most important, you can cry as much as you want and everyone thinks you have just gone to bed!

I have a 40 min drive ahead of me to get to physio and right now I am wondering how I am going to sit still for the drive, I sure wont be doing this to myself again in a hurry-guess I have learnt my lesson good!

Just to explain a bit, I only got given a 2 month rx for tramadol as it was a newly introduced med, then we made a follow up appointment-just didn’t realise it was 2 months 3 DAYS after the last one…so thus I ran out 3 days before my appointment. I did work this out last week but silly me thought that I would be able to handle 3 days without and didn’t want to bother the dr beforehand…I’m thinking I didn’t put much thought into that lol.

Oh well, you live and learn-sometimes more painfully lol!

Two schools of thought...

I have always wanted to do ballet but we never had the money when I was growing up so it never happened. I was talking to a friend the other day and she said I should find out about adult beginner classes and just see if it might be possible so I did as she suggested.

I got some information back and it may be affordable, just need to do some working out.

But here is the crunch…I told my Mum.

Her first thought was “what makes you think you will be able to do ballet?”

…my reply “what makes you think I can’t?” (I didn’t actually say this out loud, instead I defended myself by saying all the things I still do, so why cant I just give ballet a go?...)

Ok so I may get there and it may be too much but how do I know if I don’t try? I’m not about to give up a childhood dream just because ‘I may not be able to do it’…when did I turn into that person? I don’t expect to be doing point or making it my career, I don’t even know if I will ever look graceful I just want to give it a go and have some fun in the process…

I just find it interesting that’s all, how different people think along different paths, it never occurred to me to think that maybe I wouldn’t be able to, I wanted to challenge myself and see if I could.

Tips for a better life...

I don't normally do the whole pass it on thing but these really stuck a chord for me and I thought I would share them with you my lovely readers if you feel like reading them, some of them are pretty important things to remember I have a feeling...

By Nithya Shanti
Tips for Better Life

1. Take a 10-30 minutes walk every day. And while you walk, smile.
2. Sit in silence for at least 10 minutes each day.
3. Sleep for 7 hours.
4. Live with the 3 E's -- Energy, Enthusiasm, and Empathy.
5. Play more games.
6. Read more books than you did the previous year.
7. Make time to practice meditation, yoga, and prayer. They provide us with daily fuel for our busy lives.
8. Spend time with people over the age of 70 & under the age of 6.
9. Dream more while you are awake.
10. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
11. Drink plenty of water.
12. Try to make at least three people smile each day.
13. Don't waste your precious energy on gossip.
14. Forget issues of the past. Don't remind your partner with his/her mistakes of the past. That will ruin your present happiness.
15. Don't have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
16. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class but the lessons you learn will last a lifetime.
17. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
18. Smile and laugh more.
19. Life is too short to waste time hating anyone. Don't hate others.
20. Don't take yourself so seriously. No one else does.
21. You don't have to win every argument. Agree to disagree.
22. Make peace with your past so it won't spoil the present.
23. Don't compare your life to others'. You have no idea what their journey is all about. Don't compare your partner with others.
24. No one is in charge of your happiness except you.
25. Forgive everyone for everything.
26. What other people think of you is none of your business.
27. However good or bad a situation is, it will change.
28. Your job won't take care of you when you are sick. Your friends will. Stay in touch.
29. Get rid of anything that isn't useful, beautiful or joyful.
30. Envy is a waste of time. You already have all you need.
31. The best is yet to come.
32. No matter how you feel, get up, dress up and show up.
33. Do the right thing!
34. Call your family often.
35. Your inner most is always happy. So be happy.
36. Each day give something good to others.
37. Don't over do. Keep your limits.
38. Share this with someone you care about

I've been tagged...

So I’ve been tagged, huh-sorry was I playing tag? You know I cant run, how is this fair? you didn’t give me long enough to get away…lol.

Rules: Once you’ve been tagged, you are supposed to write a note with 25 random things, facts, habits, or goals about you. At the end, choose 25 people to be tagged.

I am the kind of person who usually cant be bothered with this type of thing. I don’t go much for those forward emails and such although some I do actually forward to select people myself (if they really do engage me).
But I found this interesting, I was curious as to what I would actually put as my 25 things and whether it would be hard to do so I gave it a go.

I’m not going to “tag” others though…if anyone wants to have a go feel free and join in the fun but I’m not about to force people or make them feel obliged.

*I’m not sure I even know 25 people to tag anyway lol!


Ok so 25 random strange things you may or may not want to know about me (in no particular order)…

1- My Dad thought I was a boy when I was born…the midwife knew otherwise and shoved my baby parts in my Mothers face to double check (although I’m sure she wished I was a boy over the years, all the trouble I have caused).

2- I was awarded “Most improved player of the season” at our Tennis club when I was 10, the second person to get this Memorial cup

3-I sort of saved my whole family and our house to some degree the morning of Christmas Eve 2001, when we had a house fire and I was the first to wake up (remember to put shoes on if nothing else if you are ever in this situation).

3-I was home schooled since I was 12, I don’t have any high school qualifications but I am a bright cookie (getting into physio school proved that)

4-I have 5 brothers, 2 older and 3 younger…one (older) who has special needs, both physically and mentally

5-I love to wear dresses and skirts and look pretty but when I was growing up I was more of a tomboy

6-I do things to please others, though I am learning that I actually come first…

7-I’m almost 24 and I have never been kissed by a boy (how sad is that!)

8-I am a cry baby, very emotional…I remember crying when I first watched the ugly duckling at age 4

9- I feel other people’s emotions very keenly, so much so that they can make me feel very sick and I wonder how other people don’t seem to notice anything

10- I have never dyed my hair (my cousin put in highlights once but I don’t think that counts)

11- I have had self esteem issues ever since my first day at primary school when I was bullied

12- I’ve had hip preservation surgery that basically enabled me to walk again (and gave me a cool scar and some screws)

13- I sung solo in a primary school production (was one of the lead parts too) but I have lost my ability to sing now, due to meds I think

14- I am still quite proud of my boss’s speech at my leaving presentation (my first ever job, worked in a law office for almost 2 years). He had pulled out my CV covering letter and read out how I had described myself when I had applied for the job and said that it was all true and more. I felt so appreciated in that moment.

15- I am Catholic and probably rather traditional at that, but it’s my religion and I don’t force my beliefs on anyone else so I’d like people to respect mine

16- I am a bit of a Winnie the Pooh fan…duvet, calendars, soft toys, stickers, stationery, clothing, jewellery…you get the picture lol

17- I still have a balloon I was given the day before my 5th birthday (its one of those fancy foil ones but still, that’s almost 19 years ago)

18- I was the first (after my Mum and Dad) to hold my 2 month prem baby brother, he was so little and connected to lots of machines that it was rather scary!

19- I have never been drunk, ever (I hate vodka, wine, beer etc which doesn’t help but I love chocolate :)

20- I go crazy over post-it notes, I have all sorts of different ones for different purposes

21- I slept under the table at my best friend’s graduation dinner, the poor waiter got such a fright when he saw me (so I got told)

22- I still only have my learner’s car licence (you can get this when you are 15) and I don’t drive-though I’m supposed to be starting to practice again sometime soon

23- I could never get my single leg spins on the ice quite right, used to have perpetual bruises on my knees because of it.

24- I am a perfectionist, this is a not so helpful trait

25-and last but not least-I have an inner strength building condition called CRPS, it turns your world upside down and sets a life long challenge, making the levels harder at will. I like to believe that I can win it over and get to the finish but know I need my friends to help me get there

Its just too hot

We are having a proper summer just now with temps up in the 30s Celsius. I am the first to say I don't like the cold but my previous tolerance for the heat seems to have disappeared too.

My bedroom is upstairs, and faces a direction that means thus far I have failed to keep it cooler in any way, in fact it seems to be the hottest room in the house :(
Not very helpful when it comes to resting up or trying to sleep, even at night as it doesn't cool down much either.

It is just too hot for me, my foot feels like it is so swollen that my skin could explode (it doesn't look swollen though so that is ok) and doesn't help the burning pain. I'm cranky from pain and lack of sleep and just wish I could stop hurting for just a little bit, I'm tired of all this...I'm hoping that this weather doesn't last too much longer as a few cool days would be appreciated-not just by me but I think a few people!

Worth it...

Hair done up nicely
Healthy looking face (created by natural looking makeup to hide the deathly pale face and exhausted looking eyes)
Nice jewellery
Pretty cream dress with roses and sweet little top to go with it
A spray of scent (Crabtree and Evelyn-Freesia)
…black trainers, but as soon as we were in the Church, the trainers came off and white ankle socks were left on.

I went to the wedding and I’m glad I did.

For weeks I have been trying to dream up excuses as to why I wouldn’t go…I don’t have anyone to go with… I don’t drive so I cant get there…I don’t know if I will know anybody else there…then I thought hell, stop being pathetic and just go (in the end I actually got to go with my bestest friends mother so I wasn’t alone, nor did I have no transport or not know anybody else there but I had made up my mind before all that).

She was beautiful, her dress was a dream, she radiated with happiness. It was amazing but I felt like crying as it made me wonder if I would ever get my fairytale wedding-I pushed that thought out of my head, this was her day and I was truly happy for her, it wasn’t about me.

May the promise you made each other last forever and may you be blessed with a long loving life together, growing closer with each passing day.