DO NOT ask me how I am

I may just will cry. Heck even if you just look at me my eyes may well up. You can asked me if I slept at all last night(it looks that bad? yes it looks that bad...), just dont sound like you care and I should be ok.

There is this horrible tension where I'm living, making life pretty miserable. I tend to hide in my room and I hate coming home now because I never know if its ok to say hi or whether I should say nothing. I dont know if she means to be like that, its just how it feels and I tend to be pretty sensitive to whats in the air.

Put that on top of a physio induced flare and chronic lack of sleep and its turned into a recipe for emotional breakdown. I just want to go home and cant wait till Easter when I get to go home for 9 days, it will be so nice to be looked after by my Mum for a week.

What a day

6.45am Awake
Work on assignment
Get up (yes, I have it so I dont actually have to get out of bed to study in the morning-is that bad?)
Shower
Breakfast and meds
Make lunch
Hurriedly towel hair because there is neither time to dry it properly nor plait it
Pack lunch...and slightly less heavy backpack (what did I forget?)
Opps, dont forget to brush teeth....dash out the door

Ride to Uni and arrive with 10 min to make the 10 min walk to my lecture (no fake running this morning)

Lecture
Library to work some more on said assignment
and more
and more...
Stop for lunch
Walk to centre to find friends to eat lunch with (and discover certain person is sitting with them hence I cannot)
Eat lunch by self
Walk to supermarket number one to buy muffin cases
Walk to supermarket number two to buy muffin cases as number one didn't have any
Hurry (and this actually included some attempt to run) back to physio school for lab I was now extremely close to being late for
Lab, which was both boring, interesting and tiring
Back to library to spend yet more time on assignment since lab finished early
Walk to physio school for tutorial
Tutorial...which they tried to make interesting and kinda was but it was too late in the day by that time to do anything else but wish for the end to come
Walk 10 min walk back to scooter in rain with no jacket (no one told me it was going to rain today)
Ride home

Switch on laptop and work some more on assignment
Eat some chocolate and YAY...finish assignment (I can go to ballet afterall)!
Check email
Eat dinner
Get changed and hitch a ride in the rain to ballet
Hitch a ride home
Make blueberry muffins (which take forever to cook in our tiny cooktop oven-I hate standing up)
REALISE I AM IN SO MUCH PAIN COS I MISSED LUNCH AND DINNER MEDS

I wore my TENS all today and was so busy that I didn't notice I had missed them till I stopped to catch my breath.

So now of course I cant sleep (sigh)

Tomorrow is last day at this clinical placement so I really hope I do get some sleep as I will be getting feedback, I also have my brain MRI in the afternoon and trying not to think about it, makes my stomach churn ah well. Aint life just a dream?

I live pretend...

...and I NEED to feel in control.

I hate it when things become unpredictable, or when people see through the pretend and are nice to me. Somehow its harder to deal with genuine nice than it is to deal with being ignored. I have to pretend so much that I'm not really sure what the real me is or even if there is a real me, I got asked when I made time for 'me'...I hide in my room and there I can be me, you see the real me, the people I reach out to get glimpses of the real me (and then I feel guilty) but I try not to do it too much.

Several things have happened this week:

I got listened to by health professionals, like for real, on several occasions...
I got told to "take care of myself", and when I replied with "I'm not very good at that" she said "that's why I told you"...
I found out that my 'mask' is pretty good, even on half an hours sleep
I admitted that maybe, just maybe I have a few demons locked away that need sorting
I found out how easily I get freaked out when someone takes away my control of a situation
I made a whole room go instantly quiet (I fell off a plinth right on my SI joint but I'm sure its fine)

Its going to be a hard road ahead, one I don't want to take but I know I have to. I am seeing how my reaction to certain situations screams out how I don't feel worthy of others help, I want to help people, but I don't feel like I deserve any help myself. I cant even take compliments and that is so sad, I feel like I am wasting their time or being a bother. I also got told (once again) that I am far too hard on myself, another thing I am trying to work on but its becoming all too clear that I cant do this on my own (my immediate thought on this is how pathetic and weak and crazy that makes me-things I've been told I am not) so help here I come but just treat me gently, I'm fragile underneath all this pretend.

CRPS I hate you.

RANT...My life is a soap opera

How come people have the right to add to the stress I already live with on a day to day basis?

Its useless trying to make them understand what its like for me, they cant understand as they have no perception of what it takes to get out of bed and make it to an 8am lecture, what it takes to make it to the 5pm end of the day. I know everyone has trouble getting up for 8am but waking up every morning exhausted, in intense pain, half blind and with a pretty visible tremor that takes a good half hour to settle is not normal, well it is for me but I dont think it is for most people.

Add to that physical and emotional stress and you start to falter, start to lose faith in your abilities to cope with the outside world and try to hide even more. I have been told pretty firmly (by 2 different professionals) that I NEED to get my act together and go back to counselling so I know I need to, I just feel like even that is one thing too much at the moment. I know it is going to be hard and I just dont know if I have enough in me to deal with everything around me and cope with that too...why does life seem so darn complicated?

I had my first day at placement where I did not feel I could handle patients, I hadn't slept all night except for half an hour (I messed up my meds and my whole body was burning hot and sweating all night) and feel extremely dizzy and nauseous. I was so disappointed in myself despite the fact I couldnt really do anything about it. Luckily I didn't have my own patients to treat, I was just supposed to be assistant for my classmate so I just asked one of the other girls to help when it came to balance assistance.

I had my midway personal assessment and I feel much more comfortable with the clinical educator after the first week so yesterday morning I basically said that I suffered the same 3 'invisible' symptoms she talked about for MS and that everything was undercontrol as far as the Associate Dean was concerned. I said she could trust me that I wouldn't put anyone in danger but I still felt disappointed, I was hoping to get through the first placement fine. I even had to leave a tutorial half way through to nap for an hour so I could make it to the end of the day. I think I need to figure out a better strategy to help me get through the days when I have no breaks but lunch time, something I think I will got back to my student advisor to talk about.

I wish I could snap my fingers and all my worries would disappear, it sounds so much easier...can I really do this? am I doing the right thing?

Because your're worth it

If I ever needed reminding why I am putting myself though this, I just have to see a patient. Clinical is so fulfilling, its the easiest and fastest way to forget about my pain and focus on someone else, someone I can actually help in some way (even if like me, their pain is ongoing). I may have freaked out last week and felt way out of my depth, I still have a lot to learn BUT I can do this, I can show I have the skills to interact with patients and do it well even.
I started today absolutely exhausted...I actually had a conversation with one of my tutors going up the stairs about just how fatigued I was. But when the patients came and we got them going, challenged them and shared in their success and endorphins, well I was energised and frankly happy. The truest happiness I guess I have felt in a long time.

And thats not all, at the end of today's clinic, the end of week one of our first placement for this year we got some very sweet sounding feedback and it really made my day. Our clinical educator said she hoped she wouldn't be disappointed by the next group of students because we had set such a high standard! She said how impressed she was with our handling and organisation skills, the confidence we showed and the progress we had made with our patients in just the first week. Such a confidence booster and no I am not getting cocky, far from it...I am so humbled by her comments but at the same time I think I should be kind to myself and actually see that I deserve that praise, I have worked hard this week and I know of many things I need to improve on but I also know I have done well.

Several things really struck me this week...I'm working in an Multiple Sclerosis clinic, its a community based clinic for people who are at various stages of the disease to help them maintain function rather than being a 'rehab' type setting. Our clinical educator stressed three things for us to try and remember when treating our patients, she called them the hidden symptoms of MS: pain (neuropathic in nature), fatigue (different from normal fatigue) and cognitive issues...where have I heard them before?
How being motivated is so hard due to the ongoing nature of the disease I can relate to that...
They can be struggling with identity issues, especially if they are just newly diagnosed (hands up anyone?)

You know its actually pretty scary for me, sometimes I just want to say how I know what the pain is like, tell them that we take the same drugs, understand the fatigue and cognitive problems because I have the same difficulties but that is not my place, I am their therapist, not their support group buddy. I dont really know the rules on this kind of thing but I have a feeling it crosses the professional boundary when I start going along a personal level. Not that I want to blert out to the whole world or anything I just sometimes feel so close to these people (and they are more than just patients to me, they are people) because we share some of the same experiences.

One thing I do need to work out how to deal with is the horrid side effect of my meds, the ghastly dry mouth. I dont feel so comfortable sipping water all the time but I need too, the combination of meds and nervousness makes for double whammy dry so bad I loose my voice and its gross!

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?

Getting back up.....slowly

The world wasn't instant brightness the next morning but it is slowly showing me that it hasn't forgotten the recipe so I know that it is there somewhere.
Just a quick one to keep you updated, I had my meeting with the Associate Dean (who is lovely by the way). She is keeping everything confidential for now, deciding that if we tell everyone then it will bias my grading. Instead, she is trusting me to know when I feel unwell and then I am to inform my clinical educator on that day as patient safety (and my own) is paramount.

I really appreciate the fact that she feels she can trust me to make that judgment and this way I can show my capabilities naturally and then hopefully pass the competencies in a truthful way. I still need to show that I am capable, something that would be hard if I was having to 'prove' myself while not being 'allowed' near certain patients because of somehow being 'unsafe'...something that got in my way last year and created some complicated situations.

I would never put anyone else in danger so I know that she is right in trusting me, its just nice that she feels she can! And I also like the fact that she is wanting to keep in touch so we are going to meet up again in a couple of weeks just to see how everything is going. I feel like this shows that she really does want to offer me support and is not just saying it. I have also been given the name of someone else I can talk to about any aspect of the course (in confidence) should I wish to do so.

I am quite relieved as now I know the right person knows about me and also feel better knowing there are ways and means to get through even if it means taking a slightly longer route that normal.

Next on my list is to go and see my student advisor at Disability Information and Support (who I have been seeing for the last 2 years on and off) to get my paper work in (proving I am elegible for extra assistance) and organise access to the special quiet room in the library and my digital recorder and also anything else that I may find useful this year that she may suggest :)

I go and see a new dr, early next week too (my friend who also has CRPS has been seeing her for a couple of years) Lovely Jo is going to introduce me so that will be helpful and I think it will be nice having a dr who knows and understands how CRPS can affect a person on so many levels.

But there are still somethings going on that are a bit stressful. There are aspects of my life that have got more complicated, all I can say is it seems to be turning into a series of unfortunate events, but overall I feel much calmer-more in control.

And if a bit more in control is how I feel then that is nothing to be sneezed at, a few days ago I was drowning but now I am treading water-a much better place to be even if I still have to learn to swim to the shore.

Pain and exhaustion... a bad combination.

First day back was overwhelming on so many levels....
Too many for me to even try and figure out, so I think I will succumb to shear exhaustion and try and get some sleep (hopefully more than last night). Pain is bad tonight, burning all the way up to my hip and at the same time my foot is painfully frozen cold. I don't even know how I am going to survive this, I have no game plan. I cant believe how frightened I feel just now, like I'm out of my depth or something and I'm scared that at any moment someone is going to bust my cover and find out I don't belong in this level after all.

I think I just need a good nights sleep and everything will be rosy in the morning, I know I shouldn't let this get to me but sometimes its too strong to fight, I just want it all to go away.

Tomorrow afternoon I have a meeting with the associate dean, she thanked me for having the courage to contact her...I don't think I had courage, I just knew it was the right thing to do and I had to do it no matter how much I hate the thought of admitting what I have to admit. I am scared about it but at the same time I think I will feel relief too, I just hope I don't break down and cry too much.

Thank you all so much for all your comments, they mean the world to me, reading each one and knowing that I have people who care, care enough to say hi, care enough to read my rambles. Just now they mean I smile and feel loved, and that is the world to me.

Thank you, those two little words don't seem to do justice to the feeling that goes with them.

More dreams coming true

First of all I just want to say, despite all the things I am doing, it doesn't mean I am not in pain anymore. I am pushing myself more and more to see (with the help of medications and such) how much I can actually handle without displaying complete stupidity or resulting in weeks of nightmarish pain flare - in case I miss the chance now and never feel capable again.

I don't know what is round the corner, I don't know if I am going to suddenly get worse and not be able to will myself to do things, so now while I feel like I can will myself to do almost anything I am going to take the chance (I almost feel like the old me is fighting to show through, the me who once was a human canon ball and who took every opportunity to prove people wrong). I think the summer spent in the pool being made to do things that I didn't think I could handle despite the pain it caused, showed me that I still have some fight in me yet and that I need more confidence - that is why I took the plunge, fought my fear and went to my first ballet class!

It is a very easy going class, a handful of adults who have little or no prior history of ballet. The teacher is young and very kind and didn't make me feel at all silly having no idea what first position was lol. Ballet seems to be more about grace, balance and skill rather than speed and rushing about and being a girly girl it has always been one of my dreams.

I don't expect to advance very much, I suspect it will take me all year to remember all the positions and who knows if I will ever coordinate arms with feet but that is not the point. The point is I am giving it a go! My physio was very excited to hear I was wanting to try, she says it will improve my balance and strength and provide a much needed social element to my life...getting away from study is so very important especially when you tend to sacrifice everything for required reading.

After my first class, when I discovered just how easy going it is going to be (i.e the emphasis is on having fun) the excitement of getting my first pair of ballet shoes started. So on Friday I headed out to find a shop that didn't look too foreboding (I felt rather self conscious going to buy my first pair of ballet shoes at almost 24) and went about asking to try some on please.

To be honest, my excitement lasted till I put the shoes on my feet. Now I don't know if I will be able to will them to actually stay on my feet the duration of the class and some days I know already I wont be able to keep them on but I want to try at least.
The poor lady in the shop...she actually stayed almost a half hour after closing to make sure I left with a pair that I felt I could handle on my feet. The first pair she got me to try were 'perfect' if I was a hardened dancer but were HORRIBLE! how do girls even bear to have these things on their feet and stand up and dance in them???? Suffice to say I did not end up with that pair. In the end I have a pair that hurt to wear but I think I can handle (it didn't matter how many different pairs I tried they all still hurt so I got a slightly roomier pair than the ones that were perfect). In time they will soften to my feet and I think a few extra pain pills before hand will aid in the tolerance levels.

I'm still excited about dancing, but now I've had reality kick in and tell me just how much a challenge this may turn into. Doesn't mean I am not going to try, just means I will be a bit more realistic about what I expect my body to do. But the best thing is I am am not afraid to give it a go!