Rare Disease Day Awareness

If I say to someone I've got CRPS, I can almost guarantee that the response will be something a long the lines of, what is that?  

Imagine saying that to a doctor and getting the same response and every time having to explain yourself. It gets a bit tiring and can sometimes make you feel quite negative.

Which is why I want to do something positive and try and change that response.

I was lucky and my symptoms were picked up quickly and all other conditions ruled out efficiently. But this isn't the case for many and needs to be changed, so that people can access treatments they need to reduce the pain and possibly prevent long-term or permanent disability.

The medical world may not know the condition in enough detail or have a cure, but that doesn't mean that it shouldn't be a recognised condition.

Please take a look at the poster above, its all there. If someone says they suffer from CRPS just think about those symptoms, they may be smiling and happy at the time but this is what they have to put up with everyday.  Ask them how their week has been, show a bit of interest in their condition.

Just remember it may be invisible, but it doesn't mean its not there.

Pacing

Spoon Theory (Christine Miserandino: 2003) is a metaphor used to explain how much energy those with disabilities have to do everyday tasks, with each spoon representing a unit of energy. Each day is different as my energy levels differ depending on my pain levels and therefore I have a different number of spoons available. Everyday tasks plus those that are required to keep my  CRPS under control, for example physio, have an allocated number of spoons. If I run out of spoons for that day then I have run out of energy and need to rest.

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A couple of weeks ago I had a ketamine (yes that is horse tranquilliser) infusion in hospital to try and bring my baseline pain levels down. Unfortunately it did the complete opposite and made everything worse and I currently have no function at all in my leg along with higher pain levels. This has made my mobility (temporarily we hope) more impaired, using crutches and wheelchair to get around. As a result increasing the amount of energy needed to do basic tasks and the number of spoons needed to do them, with a limited supply of spoons (energy) available.  

However this led to me missing two weeks of university and I wanted to go back. Knowing I would be dependent on a lot of help to get around campus. When I got there, I had meetings with staff at the university and found out what help was available to me.  It was clear that I could come back to university although it would be highly challenging emotionally and physically. There were other options available to me such as taking a year out and returning next January and continuing from where I left off. 

I had a very difficult decision to make, with positives and negatives of all of them. The question I had to ask myself was:

Do I currently have enough spoons (energy) to deal with university, and the current emotional and physical stresses of dealing with my CRPS?

The answer: No.

So after weighing up the options and spending the day at university, I decided to take a year out. This was an extremely difficult with my head saying take a year out, and my heart saying stay at university.  

I hope to make the most of the time I have got to sort my leg out, so I can return to university in a much better condition!

About

Complex Regional Pain Syndrome (CRPS) is a chronic pain condition characterised by pain that is greater and lasts a lot longer than would be expected given the original injury. Alongside this the skin in and around the effected area may become  highly sensitised, meaning the slightest touch, can lead to pain. 

In my case CRPS affects my right leg and was caused by a sports injury. If it was not for the determination of the doctor who was dealing with my injury in 2014, I would probably not have a diagnosis. I was lucky, a lot of people go years without diagnosis as the condition is not recognised by many. Early recognition and treatment is crucial for this condition. There are not that many recognised treatments available for CRPS and there is no known cure. Which leads me to my first and main reason for this blog, to raise awareness of the condition. I hope to do this through talking about the ups and downs of living with CRPS, what works and what doesn't.