"CRPS won this week"

That is a quote from a text Jo sent me yesterday...CRPS has certainly had the upper hand this week, but have we given up? I think not!

Poor Jo had a nasty fall on Tuesday afternoon and I am still worried about whether she did some serious damage to her back when she fell on the concrete but I am hoping that it will settle down soon as long as she takes it easy. She didn't have a nice time in ED which is worrying when they do not take someone in pain seriously. Please say a few prayers that she will bounce back to feeling better really soon. I feel bad cos I would like to be able to help her out and make things easier for her but I cant.

Another of our friends (who also has crps) is having a rough time at work and it is not helping the situation. I think by Friday it became too much to handle so a few prayers for her would also be much appreciated. That her work situation settles down soon and that things are made easier to handle for her. Its bad enough the stress of working full time without people having personal vendettas against you.

And as for me, I followed in Jo's footsteps.
I had a fight with a judder bar (speed bump or whatever you call them) on a down hill driveway. It won...
Apparently I looked like I was doing a stunt double or something. I was walking down the driveway to the entrance of the rest home where I was on clinical placement and lost sense of my leg and tripped over the judder bar and fell down the bank thing. Lost consciousness for a minute or so. Apparently I was not keen to go to hospital but the RN who was checking me over decided it was necessary. I spent more than the minimum observation time because I was still pretty out of it 4 hours later so I was told. My dr and nurse were absolutely lovely though, it makes being in hospital so much nicer when you are treated well. I have holes in my very expensive clinical trousers, plenty of bruises and a few scrapes, concussion and apparently fractured the distal styloid process of the radius on my dominant hand.
Now the dr did say that she thought she could see 2 cracks in it so I'm hoping that when I go to my fracture clinic appointment that they will say it was all a mistake and not fractured afterall-I can always hope right?

I got rung up by the Occupational Therapist yesterday, she is concerned because I have concussion symptoms and am not taking time off. I dont have time to just now because I have a presentation to do on Monday etc, but I am going to have to monitor how I'm feeling and might just have to do as I'm told. She made some good points that if I push through things now and dont let my brain heal that I will make things worse and wont be able to do anything and be out of action longer. I am taking it a bit easy this weekend hoping that will be enough...

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,

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

Happy Birthday Butterfly!

I left my keys in my locker door ( thankfully a kind person found them and handed them in to the student association for me to eventually go and collect), left my umbrella in the Dr's office (she kindly phoned me to let me know) and goodness knows where I left my brain...

I cried in my first lecture reading the lovely card one of my friends wrote for me, I cried writing up notes when my brother sent me a happy birthday message, I cried when my Dad sent me a message (I think I'm a bit homesick at the moment), I cried at lunch due to 'previous friend' noticeably avoiding me and frustrating everybody else in the process.

I needed an urgent appointment at the Drs because my jaw pain that has been bugging me for the last 4 weeks had turned into almost crps like intensity stabbing pain in my ear whenever I swallowed, chewed or opened my mouth too wide. Turns out it is probably a blocked eustasion tube and now I am on even more meds to try and sort it out (I hope it does soon as its horrible).

I was cheered up by JoJo and went home to open the presents I had waiting and then to nap for a few hours (as I was so tired after the first week back at uni and all the things that have been going on).

Evening came and I went to a flat warming party... so did the person who was my 'previous friend' (which led to a complicated dance being performed most of the night). It turned into flat warming/birthday party which was so very nice. They sang happy birthday to me and I had a lovely cake, everyone enjoying a piece of it. We played Cranium (the most hilarious game I have ever played as there were 10 of us playing) till almost 1am in the morning, making the night end on a very high though exhausted note. I made it home ok on my scooter despite bleary eyes and being stopped for a breath test (which happily read NO ALCOHOL) and after texting my friends to let them know I was safely home I sunk into bed hoping that I would sleep in.

This morning the sun was shining brightly but I didnt have any energy to do much because of all the missed sleep recently. I eventually got up, showered and dressed to be 'kidnapped' by JoJo and co, off to a mystery picnic location. What lovely weather it was seen as summer is over, and we had a glorious picnic lunch followed by a walk along the beach soaking up the warm sunshine. It was nice to get away like that, going for a road trip and then relaxing for a few hours not really bothered about anything but whether any of the cheesecake would be left for anybody else to have some :)

I feel special, so special and almost unworthy...I have friends who make plans, plans which show they care and friends who take the time to say happy birthday to me. That is what birthdays are all about being reminded that there are many people who care and it couldn't have come at a better time. THANK YOU SO MUCH EVERYONE!!!

Birthdays also come with wish making...I made one wish, that this year would be a good year and that I will get through it without any major setbacks, like the last 3 years have been full of. I think I deserve at least that dont you?

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.

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

Say Hi to Mel!

I'd like to introduce you to Mel, I found her blog yesterday and its an interesting read for many of us. She is another fellow CRPS survivor who is spreading the word to all who will listen!

A Hug from Me to You...

Isn't he just so cute? This is my special package that arrived in the post on Saturday and he came from a very special person! Alison you brightened up my day so much and I just love him to bits. Thank you so much.

Christmas and tradition

In my family, Christmas is that time of year when my Mum works well into the next morning for weeks on end preparing gifts for all the people she likes to make things for. She makes Christmas puddings, Christmas cakes, Christmas fruit mince pies and all sorts. She goes shopping for presents for us all and makes lists of what she needs to do for the day itself, it is a huge extra workload.
But in among all this, she has not forgotten the meaning behind Christmas, it is not just a commercial holiday for the shops to benefit from, it is a special time of year to remember the wonder and meaning behind Christmas, a time to let your differences go and celebrate with family making time for everyone in a way that often gets lost throughout the rest of the year.
I felt frustrated and guilty many times in the preparation before Christmas this year. I did not help in the way I wanted to, the way I always used to. I wanted to help and make her load lighter but physically I was not capable and she often shooed me away off to bed or to rest because she knew and understood that my needs were greater than hers. This was the hardest Christmas for me yet, even harder than the year I had just had surgery and was on two crutches still. I don’t think it was because I didn’t make the effort, I just think I didn’t have it in me, things have got worse and I’m still drained from the year at uni.
I’m glad she understood though and even said I had done my fair share and it was time to get out of the kitchen so the boys would go in and help. I just have to accept that doing what I can is good enough and not to think about previous times.

We had a lovely day for the most (apart from a few small hiccups of lost recipes and no boys in the kitchen etc). Started the day with Christmas Mass and then home to prepare for our guests and our Christmas lunch. We had a lovely dinner with food a plenty and were still at the table talking and enjoying the company till late into the afternoon. Crackers were pulled, presents were opened, jokes were shared and the mood was merry.
I was thoroughly spoiled with many presents, my Mum always spends a lot of time deciding on what a person may like and I got some really lovely gifts because of her thoughtfulness.

I had uni friend stay for Christmas-her first, I found out she would be alone for Christmas and although she doesn’t celebrate it I didn’t want her to be alone for the holiday. I think she enjoyed her time with us and it really helped keep me busy (although I found it hard work) so that I didn’t spend time missing my best friend too much. We are very close and with her having just moved to London I am rather lonely at times as I miss her so much. My uni friend helped me decorate my room, and wrap presents and it was nice giving her gifts and a Christmas stocking and including her as part of the family.

I’m glad we still remember what Christmas is all about despite the tone of this time of year. Despite the stress it creates we are still able to find enjoyment and take time to remember its more than just food and presents, it’s a special birthday celebration that we must never forget.

Parting is such sweet sorrow.

Last weekend was the last time I will see my best friend for probably a good 2 years :(
She is flying out to London 3 days before my final exam so I am going to miss catching her before she goes and I am sad.
But instead of dwelling on that thought, we spent our last day watching movies (and sharing tears over some parts) and then going out to dinner at a nice place that does good deserts (I've always been a sweets person). The last time we went there together was just before she flew out to Japan for a 6 month period and it has now become our restaurant of choice for such occasions.
We have been best friends for a long time and even though our paths are so different now, we are still there for each other and even though sometimes the communication is a bit dodgy (I find it hard to find the time to call etc and half the time when I do she is out!) we know we can always count on each other just as we always have done.

I am going to miss her, infact-in a way I already do and she is still in the country and I think that has had an impact on this weeks pain levels. Once I get over the grief I feel just now I think I will start to get back on my feet but for now I am accepting that emotions have an effect on our pain levels.

These are some of our (ok...my) crazy photo poses from our last night...

The world through my eyes...

A dear friend of mine asked if she could interview me and post it on her blog, it was a rather scary concept because I knew I would have to openly admit to my inner feelings. But then I thought, well this is how it is in the beginning-people need to know this is what we go through on our journey of discovering RSD.

She is much stronger than I am, I only hope that one day with her help I will be strong too. She keeps me going and without her support and musings, I would falter more that I do. Maria you really are one tough cookie.

Take a look at her blog and Another Look at RSD and let her know we support her own quest to rise up and beat this condition!