Robert Gawley's Story Before I start, can I just say I’m no writer or no big speech-maker. Nor do I talk much about my arthritis to ordinary folk or strangers; this is probably the first time I’ve really opened up about it and remembering back to those tough years. My family are the only ones that know how much I suffered in those first three years. None more than my wife, who had to endure most of it. They say sometimes it’s harder for the person looking on; even though I was the one living with this awful 24/7 pain. People close to you live the pain as well. My wife has been my rock through all this and I love her so much for it. At 34, I was six years married, had two lovely twin boys, who were seven years old and was generally a very contented working guy. For about a week, I noticed I had a pain in my foot that was causing me discomfort and I was probably limping at the time. After about two or three weeks of pain, I was struggling when I lifted up my arm. So, I took painkillers and got on with life, like anyone else. I was never one to go to doctors or anything. Although, in general, my health was very good, now I was noticing a few things about myself. My pain seemed to be spreading to different parts of my body. At work, while I was moving around a lot, the pain didn’t seem too bad. When I got home from work though, once I stopped moving, my whole body was aching; like the Tin Man in the Wizard of Oz when he didn’t have oil in his joints. That was me, I just couldn’t do anything. Another thing I noticed when I got in from night shift, I was exhausted; in fact, I was constantly tired, I just wanted to be left alone to sleep all day. And, something I regret a lot, even now it still bugs me, I was becoming a pain to live with. I was on edge all the time; my wife couldn’t talk to me without getting a short tempered remark back. All my two boys wanted to do was go to the park and play football or games with their daddy, but I was just too tired and sore. Years later, I went for counselling, as I felt I let my wife and kids down. The RA robbed me of time with my kids; time I won’t get back. I’ve struggled with this for years and still do a bit. To be truthful, the pain and fatigue was taking over my life. I was changing as a person, my personality, my thoughts, the way I was looking at my life was all changing. Even now as I’m writing this, I’m remembering back to how low I felt in myself as a person. After about four months of being tired and in constant pain, I decided it was time to go to the doctor. The first visit didn’t go well. I remember explaining my symptoms, but he didn’t seem too concerned. He put me on an anti-inflammatory and the nurse took my bloods. At the start, the anti-inflammatory worked, but after about a month it stopped having any real effect, but I continued to take it nonetheless. Everything I did was such a chore because of the pain I was in. The straw that broke the camel’s back came on Christmas Eve. For any parent, that’s a night you enjoy with your kids, putting them to bed and telling them Santa will be there in the morning and watching their excited faces. I tried. I really really tried my best, but it all got too much for me when I was in so much pain on the floor trying to put up a wrestling ring for my two sons. I couldn’t do it. I broke down on the floor crying. I’d had enough, a 35-year-old dad crying in pain and wondering why, why me, why not the guy next door or the person in the next street? I felt like I was getting picked on by some higher force. I was so angry. I know it sounds silly, but this is the way I thought; I’m a good person, why has this happened to me? My wife turned to me and said, ‘That’s it, we’re both seeing the doctor after Christmas to find out what’s going on.’ That visit to the doctors went much better, my wife was with me this time and after getting more blood results back, the doctor said, ‘I think we need to refer you to a rheumatologist, the ESR levels in your blood are quite high.’ I thought to myself, finally I’m being taken seriously, this isn’t just all in my head. The first rheumatology appointment was a bit underwhelming if I’m being honest. I had built myself up that the rheumatologist was going to give me an answer or a tablet that would help take this pain away. Instead, I had to get more bloods done, get x-rays and an MRI. A month later, the results were back. I’ll never forget her words: ‘Mr Gawley, you’ve got rheumatoid arthritis, now this is how we will go about treating you.’ Music to my ears, I’m gonna be pain-free; happy days, I thought. Not quite. There were side effects to this drug, which was a DMARD (disease-modifying anti-rheumatic drug). They seemed to go on and on… I had to watch what I eat, get regular bloods done, it could affect my liver, not drink. I had lots of questions. It was a lot to take in on that first day. First of all, I was told I’ve got rheumatoid arthritis and there’s no cure, but it can be managed by medication. But there are side effects. I know it sounds stupid, but I felt on one hand I’m pain free, which is fantastic, but on the other hand, there are certain things I can’t do and eat in case it upsets my liver. Like just having a beer with friends, round at a barbecue. In my head, it’s like this arthritis thing is actually ruling my life! The rheumatologist was right about the side effects. I had to take six tablets every Tuesday, along with another drug. Although the drug worked for me and I was more or less pain-free, there was a massive downside. I just couldn’t seem to stomach these tiny tablets; they made me ill and feeling nauseous all the time. I couldn’t eat, even smelling food made feel sick. I tried anti-sickness tablets, I was told cut the tablets back to four, I had a hospital phone number, where one of the rheumatology nurses would answer any of my concerns. I hated that drug and I know it works for a lot of people, but I just felt so depressed, so low in myself being sick, weak and tired all the time. At one point, I said to my wife, ’You know what, love, I think I’d rather have the pain back, this is actually worse.’ And I felt so selfish for saying that. Everyone was trying to do their best for me and I didn’t want this medication anymore. It was agreed at my next review with the rheumatologist that I would try a different DMARD. Unfortunately, this one didn’t do much for me either, but it made me feel very spaced-out, like I was in a bubble or something. At one point, I felt like I was going to black-out, so needless to say, I was taken off this medication and went back on steroids. At my next rheumatology appointment, we spoke about my symptoms, the drugs that weren’t working and their side effects. Despite feeling very disheartened, the rheumatologist offered us hope by explaining that there were lots of other options, including biologics. Driving home, my wife and I were hoping and praying that I would qualify for one of the biologic drugs. I remember the day when we received our answer like it was yesterday; waiting nervously to be called in by the rheumatologist. I don’t know who was more nervous, me, or my wife – who had watched me go through every emotion, every injection, every appointment. It was a hard journey for her as well. Emma always told me, we’ll get through this together. I honestly don’t know what I would have done without her support; I owe her so much. When we met with the rheumatologist, she handed me a simple outline drawing of a person and asked me to mark the areas where I was experiencing pain. Where wasn’t I? The shoulders, buttocks, hands, wrists, fingers, knees, jaw and neck were all duly marked on the poor unsuspecting cartoon man. Afew more questions followed and the rheumatologist left the room. When she came back, she carried thenews we’d be waiting to hear, I qualified for the biologic. I turned to my wife, who was actually crying, as the emotion took over. I’m still on that drug four years on, injecting myself every fortnight. Although I still get flair-ups and pain now and again, that drug has given me my life back. Rheumatoid arthritis has changed me. I’m not the same person I was before it happened. I’ve had counselling and at times suffer from depression, but it’s also shown me life is precious and not to be taken for granted. I’ve never talked openly about my arthritis before; I never really thought anyone would want to listen, but writing this and looking back, I’m saying to myself, there could be someone in a similar position to where I was. All I can say is, you will get through it. It’s hard, really hard at times, but don’t do it on your own, talk to people and get as much information as you can. You will get there; I did. We are so grateful to Robert for sharing his story. At Arthritis Ireland we are continuously developing programs and services that support people like Robert in finding strategies to live full and active lives. If you'd like to support our work this winter please consider purchasing tickets for our Winter Raffle which you can find via the button below. Thank you for your support.