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As much in the mind as in the body

After the physical shut down I described last time, my younger sister Beth had to assume my role for the day, and mother my children because I wasn’t able to. Mike wasn’t staying with us at the time due to the coronavirus situation, as when I first received the inevitable vulnerability letter I went to isolate with Beth and my mum. Mike had to carry on working, so even if I wanted him to come and help, he couldn’t. 

During a phone appointment with my medical team I mentioned the difficulty I was having taking my meds and they reminded me (again) how important it was to get it under control. With a condition like mine things can go from bad to worse pretty rapidly and, in my case, this was happening. My doctors also told me they’d identified my condition as Seropositive Rheumatoid Arthritis, which tends to result in more severe symptoms and greater deformities than the ‘normal’ version. Since I’d just been diagnosed with fibromyalgia as well, this was not great news. And it worried me; until this point I had no clear idea what I was suffering from, which is why research has become so important to me. I always like to know what I am dealing with. The pain I was enduring was getting worse every day, so the reminder was intended to keep me trying and pushing, and I really was striving to do just that. I didn’t want to make myself worse and I also had to remember the reason why I'm fighting so hard to be better at this – my family. 

If I wanted to get better, like truly better, and find some kind of normality in life again, then I had to do something about it. I needed to do as I was advised and take the medication regularly. No more taking it one week and not the next and definitely no more fear. This time it felt like it was now or never. My doctor agreed another prescription of prednisolone to get me out of the immediate pain and then it was clear; I had to start doing things the proper way or I was never going to beat this thing. 

Will the fear ever go away? 

Well, the day to take my injection soon came around again, and as usual I felt sick! More so than the previous time in fact. I got hot, sweaty and was having palpitations at the thought of it. I took myself off to Mum’s room and sat on her bed, telling myself I could do this. I didn’t want to ask for help, I wanted to do it on my own and be proud of myself. I did the usual – got the pen ready and was preparing to use it, I even pressed it against my skin in anticipation of the click, then…I froze. It was horrible, I physically could not do it. I knew if I did it would be over in seconds and it wasn’t even going to be painful, but for some reason overwhelming fear took over. I shouted for Mum and she came running upstairs, she asked what I was worrying about, reminded me why I was doing it and why I needed to do it. She was calm, reassuring and all of a sudden having someone with me took the pressure off. I calmed myself down and put myself back together, and while Mum sat with me, I did do it, finally! Even though it probably took 20 mins or so of faffing about I still felt pretty pleased with myself, because I knew these injections were the biggest obstacle to me ever having better health. 

Side effects and a worrying niggle 

The day after taking my methotrexate injection is always horrendous. The side effects from the tablet form are more heightened but taking it by injection still doesn’t eliminate them. I always feel drained, tired, and nauseous, no use to anyone. Over time I think maybe that’s why I got so scared of taking it; I knew what was coming. But although it’s not the most pleasant experience I have to think about the long-term gain, keep that at the front of my mind and pray it’s enough to push me through. So, I carried on, injecting myself each week as I should have been from the start and I began to get more confident. That’s not to say it isn’t still a nightmare and some days I’m more anxious than others, but nevertheless I am doing it regularly and that’s what matters. 

Although I was generally doing well, I noticed some things that weren’t. The pain I usually suffer daily was easing but for some reason my left elbow didn’t seem to be getting better. In fact, it was getting worse. I couldn’t straighten it no matter how hard I tried, and this started to worry me. I didn’t want it to stay like that permanently. I had good days and bad days with it, some days it was so stiff and painful I could barely move it, but on other days it was just a niggly pain and I could cope. I always find it so odd how RA affects people. How can you be mostly functioning one day and able to do things and the next a switch flips and you can barely lift a finger. It really is the most frustrating condition! 

There’s always someone having a harder time 

It's on the bad days where I really think about things. I think about how we take so much for granted. On good days, I do whatever I possibly can to make sure I’ve made the most of being able to function. Consequently, on bad days when I do have a flare up and I can't move off the sofa I don’t feel so bad because I know I did more when I could. It may not be everyone’s way of approaching it, but it works for me! I’m still learning so much about my condition and in terms of that each day is a new day, I guess. I think about how people who have it worse than me must feel, how hard it must be for them to get by and how brave they are. I take my hat off to anybody who has to deal with this day in day out. 

Although I’m not yet at a point where I’m limited with absolutely everything I do daily, I do fear for those days. I am so scared those days will eventually arrive for me and that’s why I’m so determined to be better at ‘living with chronic illnesses’. I want to achieve my goals and do things I dream of doing. I want to be the best mummy that runs around after her boys and plays hide and seek and superman with them and I want to do this for as long as I possibly can, and I know I can do it. I just have to believe it’s possible! There are going to be obstacles and bumps in the road but isn't there with everything? I know I am not alone. I know I have the biggest support possible. I know I will be ok.


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