Juggling with RA!

When I was asked to write about being a performer with RA I wasn't sure where to start. The whole experience was so complicated and painful I was worried that it would come out in one huge agony-tinged stream of consciousness.

Su Nami 1I wondered whether to write about what felt like the inhumanity of the Irish social welfare system towards those in genuine need, about the way people treat you when you are ill, about how difficult it is to maintain your sense of self when you are in constant agony or about the repercussions on your mental health and how all of this together isolates you from the world. I wondered whether to write about what felt like the inhumanity of the Irish social welfare system towards those in genuine need, about the way people treat you when you are ill, about how difficult it is to maintain your sense of self when you are in constant agony or about the repercussions on your mental health and how all of this together isolates you from the world. think there are many things that need to be discussed openly about chronic illness and mental health but I don't feel I am knowledgeable or experienced enough to do it with the sensitivity it deserves. All I can do is tell my story, where it started, how I got through and where I am going. So here it is.

I was diagnosed at the end of May last year but I had serious and sudden symptoms since January. That month I had received a grant to do a three month circus course in England in which I could specialise in acrobatics and aerial (static trapeze, silks). I was very excited. When I arrived at the course for the first week everything seemed normal, I was tired from the early morning warm ups that included skipping ropes, I was really not used to this kind of physical activity first thing in the morning so I put the exhaustion down to that and I kept going because that's what you have to do if you want to learn these things. In the second week my collar bone/breast plate started to swell. I went to a physio who told me I had pulled a muscle. I had my doubts about this but he was the professional so I deferred. A month later I became convinced it was not muscular as I had pulled muscles before and they healed quicker and did not feel like this. He insisted it was muscular and continued to treat it as such, encouraging me to go back to the physical activity. Being the kind of person I am I went back to it, trying to learn handstands through gritted teeth. At this point I had already had to give up aerial as it was just too painful. Soon after I could no longer do acro because the pain and exhaustion was getting worse. When I couldn't use my arm anymore, let alone juggle, I decided maybe the best thing to do was go home and get a diagnosis. I really am glad I realised this when I did as my personality was already warping from the pain and fatigue. I was constantly anxious and getting depressed.

My doctor initially thought it was a partially dislocated clavicle, he sent me to another physio for a diagnosis and again the physio told me it was muscular and treated it as such, making me wonder: if the only tool you have is a hammer is every problem a nail?

I was unable to work, money was scarce and I was exhausted and stressed. I went back to the doctor insisting the physio had it wrong, it was nearly two months at this stage and the “pulled muscle” was getting worse. I had bilateral frozen shoulders, as tendons in my other arm were swelling, causing pain in that one too. It was difficult at this stage to look after myself, I was struggling to do basic things such as cook and even on some morning dress myself. This time I got a different doctor, she sent me for a blood test to check my rheumatoid factor, still telling me that because the swelling wasn't symmetrical it was probably not arthritis. I didn't believe her but really wanted to. The thought of getting a degenerative disease that would affect my juggling and my drawing terrified me. The blood test showed a heightened rheumatoid factor and I was referred to the rheumatology department.

A month had passed. My walk had become more of a shuffle because I was incapable of walking normally at this stage. I was feeling incredibly weak and ill. I went back to my doctor who very kindly shouted down the phone to the rheumatology department for not getting back to me. My quality of life had reduced dramatically, I went from juggling and running around every day to being housebound and unable to stand for more than ten minutes for half the week, every week. I was taking anti-inflammatories but they had stopped working and the pain was becoming unbearable.

Balancing on sideI finally got a diagnosis after five months and it was not to stop there. Once we started trying to figure out which drugs worked for me I became unable to walk without the aid of a crutch. I was constantly exhausted and in so much pain I couldn't think straight for five minutes. Some days in the week I got some relief and did my best to get outside and try to meet people so I didn't become a complete recluse, but talking to people took energy and no one seemed to recognise what I was going through at all. I started to lock myself away more and more to retain what little energy I had left. It was a hard year. I was terrified of what might happen to me, images of deformed hands and no longer useable feet flashed through my mind with such regularity it was scary in itself. I wondered if I was ever going to be able to move again, if I was ever going to have a single day without pain.

I started to get better when they found the right medication for me, several months later. I gradually started to be able to take days off the crutch and slowly things started to improve but so slowly that some days it felt like I was going nowhere and the idea of ever being able to attempt a handstand or even dance or juggle again seemed impossible. I bought a cane, it came in handy to get me around the house and when I could stand for more than 10 minutes I played with it. My hands were getting back to normal and my wrist would hold out for a while too. That winter was very hard. I never knew if I was going to be able to walk from one day to the next and waves of depression kept descending upon me keeping me from being as positive as I would like to have been. I found it difficult to talk to people, the pain made me snappy which just made me want to spend more time alone, feeding the depression. All the time it was two steps forward one step back. It may not sound like much but suggest the next time you have to be somewhere in a hurry and need to stop off at the cash machine quickly that you do just that, take two steps forward and one step back and see how quickly you get there, you will notice the frustration rising almost instantly. 

Some people say that sometimes life throws you off your path and you have to find your way on a new one, I think RA throws you off your path and leaves you clinging to the side of a cliff with no safety gear miles from any path. As I got better I started performing at local cabarets to keep me focused. I couldn't train for it the way I wanted to but when I was on stage for a few minutes the adrenaline would make me able to walk again, I could feel human for three minutes at a time, the relief was profound and the energy I got from that got me through. As I got a little better I wanted to perform better so whatever time I had on my feet was used as efficiently as possible. I stopped spending time with people that used up my energy and I started juggling with what little time and energy I had as it could go at anytime and not come back for days or weeks. I think the most difficult parts of RA for me were the pain, the constant exhaustion and the mental health issues. I was not prepared for any of them, let alone all three in one go, with seemingly no end. As my body slowly got better so did my mind. I do believe that you have to push yourself beyond your limits to see where they are. Some days I pushed too far, incurring serious punishments from my body in the form of days of exhaustion, days of pain or both. I became so sensitive to my body that I could feel it coming on and I began to understand what it was telling me and know when to rest. It can be hard to explain to people that you need to rest as a pre-emptive measure and some will assume you are lazy or selfish. I learned with some difficulty to ignore those people they same way I learned to ignore people who started sentences with “you just have to...”

By February 2012 I had come off the crutch and was juggling a lot more regularly. Now, that the pain in my feet has gone, mostly, the only pain I experience regularly is in my shoulder and neck. I get occasional pain in my feet and hands but the flare ups are few and with far less intensity than they used to have. I am so grateful for modern medicine as this was not the case for so many people, who I have nothing but the utmost respect for, in dealing with that pain and reduced quality of life for as many years as they have.

Over the last 18 months or so I have had a silly amount of time to think, not always clearly, and it forced me to make a lot of positive changes in my life. I no longer give my time to people I feel take energy from me as these were the first to disappear when I got ill. I ration my time very carefully, setting one day a week aside for getting things like shopping and anything life-related done. I give myself one day break to relax and do nothing even when I am not flared up as a day with a flare up is not a day off. I juggle as much as I can, pushing myself harder than I ever pushed myself before as I am now so familiar with my body and its limits that I feel more comfortable going for a deeper stretch or holding a strengthening position for longer. I have no idea how long my good days last before the fatigue sets in so I grab them with both hands and go for it. I spend time during my flare up doing physically undemanding things like drawing, writing or learning the ukulele, I bought a red one recently and I am in love with it. It causes me no physical discomfort at all and is so easy to learn it keeps me distracted from any physical problems I may be having to deal with. 

I am glad to be able to say now that I am merely coping with physical discomfort and fatigue. It's not ideal but it is a long way away from last year’s agony. I have a long way to go yet before I have my life back completely but I am getting there with baby steps and regular sit downs. I treat myself better than I ever have before, I let myself have treats I would have denied myself before, and I allow myself to rest and take time for myself. RA has changed my priorities for the better. I am still afraid of the complications this disease may bring in the future and I don't know how long I will be able to do what I love doing but I also know that I may be able to achieve drug-induced remission with the medication. I think for me it comes down to the idea that I am afraid of potential permanent damage or deformity RA can inflict on me if I go too far but I am more afraid of leaving a life unlived. Right now I am working on a hat and cane routine with the very same cane I bought when I was first diagnosed. It makes a beautiful juggling prop that begs to be juggled. Hopefully I will never have to use it as anything other than a juggling prop again!

To see videos and information on Su's performances click on the following links:

www.facebook.com/Su2Po

www.youtube.com/user/Su2po

Spring 2013 by Su Nami