Steven's Story - Arthritis Action

My journey with arthritis has been a real evolution. I was originally diagnosed with spondylosis in my neck and lower back. I had a pain in my right arm and thought it was just your run-of-the-mill sports injury, but when it didn’t go away I went to the doctor to look into it further. They thought it was something to do with the neck and sent me for an MRI, which confirmed I had arthritis in the spine. They recommended a physiotherapist to help before it got too serious, who made a real difference in my day-to-day life and helped me to really manage my condition for a long time.

Then in 2020, the pandemic hit. Very early on in lockdown I had suspected Covid (only suspected as it was so early on that they weren’t testing people back then!), which left me breathless and terribly fatigued for a long time. This is when everything really took a turn for me and my arthritis.

The fatigue I felt after Covid was dreadful. Any form of exercise at all would wipe me out for several days. Even if I went shopping, as we were allowed to during early lockdown, that would knock me out and I’d have to rest up for the rest of the day.

The lack of exercise had an almost immediate effect. I became very sedentary and started to put on weight. Alongside this, the pain in my back became worse, and I began noticing frequent pain in my right hip and left knee which had been fine before the pandemic. Previously my arthritis had just felt likes aches and pains, but by this point it had become a persistent problem. It really started affecting how I was feeling. Mentally, it was as if everything was piling up on top of everything else with no end in sight.

The fatigue slowly got better over time, but I wasn’t aware of what was really causing my problems or what I could do to improve the situation. I was stuck in the cycle of working hard to do something, be wiped out and feel depressed, then do it all over again without learning anything.

Things continued like this for almost two years. Then, in early summer of 2022, I began having bad abdominal pains. They weren’t initially sure what was the cause, but no matter what there was a very good chance that I would need surgery. The consultant didn’t give me much information, so I did a lot of my own research on what I could do before the surgery. Websites like Arthritis Action and the British Heart Foundation had brilliant information on the importance of weight loss and exercise. The leaflet “Preparing for surgery – fitter better sooner” from the Royal College of Anaesthetists was particularly good. I found almost everyone agreed that the one thing I could do to help myself before surgery was to lose weight, as at that point I still had a lot of excess abdominal weight.

Suddenly I had a goal for myself. I knew I could help myself by losing weight, and a date I had to lose it by. That overrode the underlying feeling I had over lockdown, that feeling of “I feel miserable so I’ll eat to feel better”. I began calorie counting and I began rigidly eating 1,800 calories a day. I hated it, but it was something I could control. It was a means to an end.

“Now that I’ve made these changes, my life is better! I feel happier, healthier, more awake, and feel more positive about myself.”

The weight loss definitely made a difference. I started feeling like I had more energy and wasn’t eating excessively, which then made activity feel easier each day. I started walking further than before, and began swimming at my local pool. It took some time to get into it, but after a while I really started enjoying it.

Within about a week after cutting down my eating, I started feeling less fatigued. I was shocked by how quickly I felt the difference, and how noticeable it was! The joint pain then started decreasing after around 2-3 weeks of sustained weight management and exercising. I realised just how much worse I was making my condition. It’s so easy to get stuck in this loop of being in pain, getting depressed, therefore going out less and eating more, which then leads to even more pain and fatigue. After just a week of working to break that cycle, I saw how much I could control my condition.

I had my surgery in August 2022, and unfortunately ended up catching Covid-19 again while in the hospital. This really set me back and affected my mental health, as exercise became difficult again and I gained back some of the weight I had worked so hard to lose. It took several months for me to be well enough to start moving again and begin managing my weight, which once again lessened the pain from my arthritis.

I had to think about my situation differently after the surgery. It was no longer a sprint, but a marathon. Before, I had a goal of losing weight for the surgery. Afterwards, I needed to look at what I’d be happy doing for the rest of my life. The benefits of the work I did before the surgery was that I knew how much of a difference my self-management could make. I felt so much better when I exercised and wasn’t so overweight!

In the end, I ended up giving myself three guidelines to stick to. Firstly, I would exercise every day in some way. Of course, every day is different – even if I have a day where I get out the door and my body tells me today is a bad day, I can turn around knowing I made the effort and tried. Some days I really didn’t feel like I had the energy to walk, but actually felt better once I started moving. Because I was doing a little something every day, my fitness built up. Over time I found I could do more than I could a week or month before.

Second, I wouldn’t eat after 8pm and I’d try to eat all food sitting at the dining table, not standing in the kitchen or in front of the TV. If I was hungry and knew I needed to eat to sleep well, then I could eat healthy, nutritious food, but no empty calories. I would clean my teeth earlier, so that I knew I now couldn’t eat after that moment!

Thirdly, I had to be in my bed for 11pm, or 11:30pm at the absolute latest. I found that when I ate later I put off going to bed because I felt okay, but that made me feel awful in the morning and was bad for me in the long run. Together, my guidelines meant I felt better for longer periods of the day and could do more in the daytime rather than just before bed. Nowadays I feel healthy and happy when I wake up. I often go for a walk or a swim in the morning, even before breakfast, which really starts my day off with a win.

Of course, it’s important to say that these are more guidelines than strict rules. I want to live with these for the rest of my life, so it’s important that there’s leeway if I have a bad flare up or something comes up that I can’t avoid. At my great nephew’s birthday recently, I didn’t follow my guidelines. I ate cake and didn’t do much exercise that day because I was busy. And that’s okay. It’s not about strict black and white rules, “you must do this”, it’s just about improving. I found it so much easier when I was calmer on myself.

We’re all individual, and there’s no golden rule for how we should all live. If there was, we’d all be doing it! For me, it really helped to step back and take that wider view of my life. What can I control, and what do I do that makes my pain worse? I realised I could be doing a little more each day to improve my condition, and I could keep that up indefinitely.

Now that I’ve made these changes, my life is better! I feel happier, healthier, more awake, and feel more positive about myself. I don’t want to go back to how I lived before. I’m in a better place now, and I’m managing my condition!