Throughout the period of my personal suffering, I have discovered that the ways of expressing misery are infinite. I have often wondered how others express their sadness and pain and if I was being over dramatic when it came to my wails in the night or sobbing throughout the day. My admissions to hospital provided evidence to suggest that everyone copes with suffering in different ways. The older ladies I have often been situated next to in my hospital bed made great efforts to call out to someone, anyone, that could hear them in the night. Others I have come across have shed silent tears in the hope that people won’t be aware of their pain. I have spent days where I have barely been able to stop the flow of tears, which inevitably left me feeling worse with headaches and general ‘puffiness’. I tend to be a mixture of all these expressions. On occasion I have wept hoping that no one will notice so I won’t be treated differently and other times I have been ready to shout to the world my complaints of stiffness and discomfort.
I do feel it is important to communicate your sadness, as keeping it all in is only asking for trouble and more stress on top of your distressing condition. At the same time, it is also important to express happiness. I have found that your emotional state has a huge impact on your physical health. On my cheerier days, I have felt substantially better just from wearing a smile on my face. The release from a prison of misery is incredibly overwhelming. I have shed tears of joy on the days where things seemed to be going right for a change, due to sheer disbelief I imagine. Mainly I express my happiness by being a ‘normal’ person. I go about my day ‘normally’ to a point where a stranger would not guess I have a crippling condition that leaves me bed ridden on occasions. The feeling that people are treating me no differently than any other young woman they may see on the street is hard to believe, as I know behind closed doors my family and close friends see a different picture.
My emotions are heightened these days, from extreme sadness to overwhelming happiness. It can be exhausting holding all those feelings within an aching and tired body. Relaxation is the key. If you have a bad day, when possible, take some time out and do something that will make you smile even if it’s for an hour. Perhaps a relaxing bath, reading a favourite book or listening to a CD by yourself for a few moments can provide the release of emotional stress you may desperately need. I am not saying this will work for everyone, but for me, the time I settle down and get lost in a good book ensures that for at least a few moments I forget I am the girl with RA.
I completely agree with physical and mental being very closely linked. So many people don't seem to understand this.
ReplyDeleteAll through my teenage years I never managed to express my sadness as when I did it would only make others feel helpless and depressed. As I have got a bit older I have learnt to open up more and noticed that I wasn't hiding my sadness as well as I thought I was!
I first had arthritis when I was 10. It left my hip joints severely disfigured and I had the most embarressing limp until I was 17. I then had both of my hips replaced. I finally thought I was free of physical limitations (after a course of intense physiotherapy) until I developed RA again but this time in my knees and ankles.
I am 20 now and it felt very strange (but amazing) to find your blog, after years of feeling I was pretty much alone on the RA front! Everyone I meet who has it is over 50!
Love xxx
Dear Kerrie,
ReplyDeleteYour blog post comes at the right time for me. I am 48, diagnosed with RA 10 years ago in the middle of my pregnancy with my 2nd daughter, in my profile picture. I am a moderate to severe case with no remission.
I have just come out of several weeks of on and off severe flares. I had to go off all my meds back in October due to gastric problems going back to April. I was told I could be bleeding internally when they discovered I am anemic, then they found I had an acute case of H.Pylori. I had to undergo dual antibiotic therapy, followed by an endoscopy and colonoscopy to find the source of the bleeding. They removed polyps from both my stomach and my colon, but found no actual source of bleeding, and no cancer, thank the Lord!
However, as soon as I was done with my gastric procedures, I became ill once again, with a sinus infection, and had to undergo another course of antibiotics. Another 10 days I had to stay off my RA meds, to keep the immuno-suppression from getting in the way of the antibiotic doing its job.
I have just suffered possibly the worst flares ever. The flaring joints covered me from head to toe, literally. I felt as if these would be the last. Days of inability to brush my teeth, shower, barely able to clean myself after going to the toilet. In short, I feel as if I have just come out of a coma!
I've gone from extreme agony, to extreme joy at the mere thought of walking without a cane, and regaining the function of my hands. However, my adalimumab injection has rendered me so immuno-suppressed, that I am once again ill with a terrible upper-respiratory infection.
While the relief in agonizing pain is sweet sweet delight for my body, mind and soul, I find myself horribly ill with this upper-respiratory. A tease before my day in the sun...
But then again, I find myself in tears at the tormenting thought, that tomorrow, as I begin to face people I have not seen in 2 months, they will see me looking and walking normal, and expect me to kick start right back where I was. I don't feel able to do that. Not just yet. That is my torment...
In the meantime, your blog has given me permission to cry. It has given me permission to believe, that perhaps no one will ever understand the pain of being crippled on and off again. I realize that I cannot lean on those closest to me for support, only on my Maker.
I am back to the reality of not being able to complete tasks on time because of my on and off illness patterns. I am back to the criticism of people who expect me to produce in a timely fashion, when I can't. I cry at the thought that once again I will be unable to explain my lateness. I cry at the thought that putting my family first from within a body that operates at half-mast in the mornings, will be seen as an excuse.
I find myself thankful, believe it or not, for the agonizing, crippling pain that forced me to stay in that haven called the bed, from where I could escape the world and the criticism and lack of acceptance of my crippled person. Ahhh, the torment of facing the "normal world"... or is it fear?
Your blog has made me realize, that I am suffering not just from the crippling pains that have afflicted me for a decade. Your blog has made me realize that I am also suffering from a myriad of emotions that ensue from the periods of great crippling pain, even though one of those emotions is great JOY! My hands are back! My feet are back! Halleluiah!
Now, is there a world out there ready to receive me? Is there a world out there ready to cradle me in my moments of re-entry into "normal life"? I know where to find my Lord's lap to cry on. Thank you for saying, that it's OK to do that. Thank you for being one of those first open arms as I re-enter my world.
Thank you Kerrie!
Your RA Buddy in the states,
Cecile