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,

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!