One Month On...

One month ago, I walked into hospital to have a ketamine infusion to try and lower my base pain levels down as my CRPS kept flaring up. The intention was that I would walk out of hospital with lower base pain levels and return to university the next day. Unfortunately at some point during the procedure my brain decided that my leg needed protecting and turned my leg off, leaving me with no function and in more pain than I was in before. So instead I came out of hospital on crutches.

The following morning my consultant organised an emergency appointment with a lead neurologist to check that nothing else was going on except for my CRPS. The neurologist reassured me that nothing obvious was going on, except that my CRPS had deteriorated post the infusion and that my leg would come back to life at some point. I then went through a couple of weeks being on very strong pain killers and still in a lot of pain. I didn't think it  could get much worse, but then it did, my CRPS spread all the way down my leg to my foot, it felt like I had severe sun burn all the way down my leg, along with a twisted ankle and stabbing pain in my knee, it was constant with pain spikes.

Throughout the weeks that followed, I spent a lot of time at physio and at the doctors with all of them trying to find a way forward for me. I knew there was a long road ahead, which would be full of ups and downs and I would have to put in all my energy into staying positive and give myself the best possible chance of a recovery.  

***

One month on yes I'm still on crutches, still have little function in my leg and still in pain. But the fact of the matter is, I got through a month of it, which I didn't think I could at the time.  Yes there were days in the last month where I wanted to give up but somehow I carried on going. Despite all of the difficult, negative things I have had to deal with there are some positives. The biggest positive is that it has proven that I am stronger than I think I was and, that I can get through the harder times. Yes I would rather be at university, but by taking the time to get my condition under control I will be able to enjoy university more when I go back.

There will be more times in the future where its hard to cope and feel like I can't deal with it any longer. But even though I cannot jump the hurdle at the time, does not mean I will not in the future. 

I hope this has given a little insight into some of the battles faced by living with CRPS. But importantly just remember this:

"you're braver than you believe, you are stronger than you seem and smarter than you think." (Winnie the Pooh)

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.

***

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!