It was the last day of term, the summer holidays were laid out ahead of me and I couldn’t wait. Because I don’t drink I wasn’t at the end of term staff party but was, instead, at home on the sofa with a bag of Haribo and a can of fizzy pop. Living the dream, or at least my version of it. At about eleven my ‘phone rang, it was my wife who, unlike me, does drink and who, again unlike me, enjoys social events. She was in a bar with her colleagues and wanted me to come and say hello and then walk home with her. I got up, got washed, ironed a shirt, selected the right trousers, polished my shoes and then jumped on a bus to go and meet her.
After an hour or two of listening to drunken stories, too loud laughter and whatever horrors the bar staff were playing over the sound system in the bar we said our goodbyes and started to walk home. It should have taken us about thirty minutes to get back to our flat. After about fifteen minutes though I felt a terrible pain shoot through my left leg. It was terrible. I couldn’t walk. I sat on a wall and explained things to my wife. She asked if I wanted to wait on a taxi but I said no and that I would be fine in a minute. I wasn’t fine in a minute. I cried because the pain was so awful.
Over the next few weeks I noticed swelling in my left ankle, that wasn’t too concerning as I had broken it when I had trials for a football team as a teenager and again when I tripped over a pole holding a barrier in place at a Morrissey concert in Motherwell…only after I had launched myself onto the stage to embrace him of course. When I went to see the doctor I told her about the football injury and the Morrissey incident and so she decided that some rest would probably be enough. It wasn’t enough. A week or so later I was back and this time I was given anti-inflammatory drugs. That didn’t work.
I was now living with constant pain and discomfort. My knees had now begun to swell too. The doctor thought that was probably related to my ankle and the way I was walking to protect it and so off I went to a physiotherapist who gave me a wedge thing to put in my shoes. That didn’t work either…and the wedge didn’t fit in my loafers. Even with constant pain I wasn’t ready to sacrifice those.
Playing football, running, walking long distances, climbing stairs, kneeling down…had all slowly, but very surely, been removed from my life. I was starting to feel hopeless. Eighteen months had passed now and nothing had brought any relief and there was still no explanation. Then I was sent for a scan on my ankle. That revealed a chip in my ankle which the consultant thought might explain the inflammation in it. Surgery maybe?
One day as I sat in front of a different doctor and told her about my symptoms she did something nobody else had done and asked if she could look at my knees. I pulled down my trousers and before I had actually removed them she was already on the ‘phone to the hospital to arrange an appointment with rheumatology. She was worried that I may have something called “bursitis”.
The bursae are sacs of fluid that cushion bones and muscles near your joints. When they become inflamed they can cause swelling and pain. At last I thought. I know what’s wrong with me. Now that I knew that I felt sure that some remedy could only be an appointment away.
When I eventually found myself in front of a consultant in the Rheumatology department he spent a long time looking at, touching, pressing on and squeezing various joints…not just my knees. When he was done he told me that I didn’t have bursitis but that he was fairly confident that I had arthritis. I don’t remember much of what he said after that. The next thing I remember was being in the changing room as I undressed to get some x-rays taken. Sitting in my underwear with the gown in my hand I started to weep.
I wasn’t crying.
I was weeping.
Arthritis was serious.
There was no operation.
I knew that much.
After the x-rays I got dressed and left the hospital. I sat in my car and wept again. I felt angry now too. I was a young-ish man. I had a wife and child. I had dreams of playing football again and of running. I wanted to be able to climb stairs without having to use a handrail to drag myself up. As I sat in the car I felt my life slipping away.
Initially I was placed on a drug called Methotrexate. It isn’t to be taken lightly. It can cause all manner of unpleasant side effects; sickness, headaches, diarrhoea, vomiting and complications with liver function. I had to have regular blood tests too. This was a world away from paracetamol or an Ibuprofen.
Methotrexate didn’t do anything, the inflammation and the pain remained the same as before so a second drug was added; Sulfasalazine. This is when the fun really began. Within a month or two of starting on Sulfasalazine I found myself using Google to find an answer to the following questions;
“Can I overdose on Methotrexate or Sulfasalazine?”
“How much Methotrexate do I need to take to kill myself?”
I was done.
The Saturday before that I had planned on going to the football with my dad. Before he arrived one of my knees had swollen to such an extent that I couldn’t bend it at all. I was using an ice pack and then a hot water bottle in some mad attempt to take the swelling down. Nothing was working. I can remember hopping to the bathroom and washing myself at the sink before crawling back down the hall to my bedroom to get dressed. The walk to the stadium from my flat was about 5 minutes…if you are going at a leisurely pace. After ten minutes we had made it about half of the way there. Inside the stadium I looked up the steps to the row where I had a seat and nearly burst out crying again. But with my dads help and the handrails at the end of the rows I managed to drag myself to my seat. I lasted 15 minutes before I couldn’t take the pain any longer and left for home.
I knew by this point that other people had things much worse than me with arthritis and that people were going through pain and trauma on a scale I couldn’t imagine with a variety of other conditions, treatments, disabilities and diseases. I didn’t care. All I could think about was another day like this one. Another day of pain. Another day lost to a condition that I hadn’t contributed to…this wasn’t a consequence of poor lifestyle choices or some terrible accident, this was just…my luck.
After finding the answers to my questions I also found the resolve not to act on them…for now. The following morning I had an appointment with my Clinical Nurse Specialist for steroid injections into my knees. When he came to collect me from the waiting room he could tell something was wrong. I had lost a huge amount of weight (I had pretty much stopped eating), I was unkempt and he could probably see in my eyes that I was beaten. We chatted for a while and then he asked if any of these feelings had coincided with Sulfasalizine. He felt sure that it was connected, in very rare instances the drug can cause serious psychiatric problems. He spoke with my consultant and I was told to come off the drugs immediately.
But now we were back where we had been before, using a drug that we knew didn’t work. I had been signed off work by this point and I was seeing my GP and Pharmacist more than I was seeing friends and family. On one occasion I left the pharmacy with a carrier bag filled with drugs; dihydrocodeine being one of them. The first time I took it I felt fantastic. The pain was still there but I really felt like I could get out and about for the first time in many months. Foolishly I decided that this meant I could really go out. I headed into town to meet some friends to see a band. After an hour I began to feel uncomfortable, tired and washed out so I left. I climbed on board a bus and headed for home. Part way through that journey I collapsed. I came to with the bus stopped and an off duty nurse putting me in the recovery position. An ambulance was about to be called when I came to. The nurse got off the bus with, along with another passenger, and they walked me to my home a few streets away.
Because I wasn’t working I would take my daughter to nursery every day. We would have to leave much earlier than we needed to because of how slowly I moved. On several occasions the staff had to let me into the staff room to lie down, get a drink of water and recover. Once I actually fell asleep on the floor. One afternoon I collected her and took her to the nearby play park. There were two mums there with their kids. I could feel myself beginning to lose consciousness and had to ask them to stay with me if I collapsed and keep an eye on my daughter. I can still see myself lying on the ground , my clothes getting wet from the puddles and struggling to reassure my daughter that I was OK.
I wasn’t OK.
I was fading.
Eventually I was moved onto Anti-TNFa drugs, specifically a drug called Certolizumab (Cimzia), which is one of the most effective treatments for Rheumatoid Arthritis. This resulted in a huge improvement in my symptoms…there was still inflammation, there was still pain, there was still fatigue but there was less of all of them.
This should have marked a wonderful new chapter in my life…I wasn’t cured or healed but I was better. Then I returned to work. On my first day back my manager decided it would be a good idea to tell me about the terrible impact that my long term absence had caused for them and for the rest of my department. The happiness I felt at being back at work was gone within an hour or two of being there. Now I saw myself as nothing more than a problem for other people. Good relationships were soured. They have never sweetened…at times they have become worse. Not for me the warm embrace of someone who had a more visible illness and had recovered, instead I was a problem, an inconvenience and a bother. Once someone says something like that you cannot ever un-hear it, they can’t ever take it back and you can’t ever move past it.
Two years have passed since I was signed off for that lengthy period. 18 months on the “good” drugs. But I still can’t play football, I still can’t run, I still can’t kneel down to play on the floor without contorting myself into peculiar shapes, I still feel tired constantly, I am still in pain every minute of the day and I still feel like a burden to others. When I have to take some time off of work the guilt I feel is worse than the physical pain. The thing is I look…normal. But if you could feel the way I feel for an hour or two you would understand that getting up and down from your seat, walking to the toilet, using a keyboard; none of it is possible without some level of pain.
Sometimes I feel like I might be making too much of it. Am I really in that much pain? Shouldn’t I just “man up”? Isn’t everybody tired in the modern world? Then I remember that my knees, ankles, fingers don’t feel like yours, they are swollen, stiff, sore. Everyday I am storing entries in my own personal archive of pain. It has come to define me and to dictate what I do…I am no longer a free man, I am at the mercy of something I can’t see and that I don’t really understand. Things could get worse, they may get better…uncertainty isn’t helpful.
Last September I travelled to London for the Star Shaped Britpop festival. It was a chance to see old friends, hear great music, meet new people…after the flight, after the trudge around town to the hotel, after the waiting; I lasted about an hour inside the venue before I had to go back to the hotel because I was too exhausted to stand. Click, off, gone. That sort of thing happens a lot, grand plans that end up in ruins because I don’t have the energy to see them through or because the pain is just too much.
All of this can make me…unreasonable at times. A bit too short with people, grumpy, a curmudgeon. It has an impact on my mental health…which makes the shortness, the grumpiness and the curmudgeonliness worse. I am sure people stay away because of some short response I have given, some witless remark, some off colour joke…not caused by my condition but given fuel by the fatigue.
Chronic pain changes…everything.
At a time like this of course everyone can empathise. Everyone feels more tired, everyone is a little shorter with their partner, everyone feels some level of hopelessness. I know what you are going through. Stay strong. A corner will be turned soon enough and you will feel…better. When that corner is turned I hope I can be beside you…laughing, joking, dancing and singing.