First days and struggling to cope
During the following days I started to feel the effects of having had no medication for nine months. The pain hit me so hard, and it didn’t just hit me in one place; it was everywhere. The nights dragged on, and I could barely hold my new-born baby without crying in agony. My wrists and elbows wanted to give way and I sometimes couldn’t do anything to stop them. Most of the time Mike would have to get Alfie for me and position him so that I didn’t have to hold him with my arms, or he would feed him (although most of the time I wouldn’t let him).
Of course I wanted to feed, change and soothe my baby myself, do all the things that mums should do.
I felt as if I’d been hit by a bus every single day when I woke up, I had no energy...not that you have much anyway with a toddler and a new baby, but this was different. I was drained, my head was telling me what I wanted to do but my body was just closing down on me. This wasn’t a normal way to live, I hated that I felt incapable of looking after my own flesh and blood, the two little humans I brought into this world and that needed me. Imagine fighting with your body every single day because you are so desperate to be active, to feel alive but your body will just not allow it. It feels like a never-ending losing battle.
Everyday life blighted by painWell, everything became too much for me. My hormones were all over the place anyway, but I just felt no relief from the pain. It was supposed to be such a happy time in my life, but I simply couldn’t enjoy it. My own body had taken that away from me. Then, during the next few days things went from bad to worse. When I walked down the stairs, I had to walk like a robot without bending my knees, because that was the most comfortable way to descend. My toes felt like they were being crushed every time I walked. Slicing fruit for Harry or even buttering bread was a task in itself; there was no strength in my wrists or hands. On a flare-up day it was far worse. On a flare-up day even now, I still struggle to unscrew the caps on bottles, I cry in pain at chopping up food or even getting a plate out of the cupboard. These simple daily tasks I was struggling to do at the age of 24 I still struggle with now. I often drop things because I lose my grasp, or I’m in so much discomfort I have no choice but to let go. To be honest, I’m just thankful this hasn’t happened whilst holding either of my babies!
A welcome phone callMy rheumatologist called a few days after Alfie’s birth as she knew I would be struggling, having already advised me the arthritis would come back with a vengeance. The plan was to get me on some medication to help as soon as possible and, to be honest, as much as I hated the idea I couldn’t wait. She’d arranged for me to go in for an appointment that week where we went through all of my options again and devised a plan. I would immediately start taking prednisolone (steroids) to give me some relief, while the methotrexate and hydroxychloroquine was getting to work (this can take up to eight weeks, sometimes longer). I knew what to expect from the medication as I had been given all of the information before discovering I was pregnant, so it was just a waiting game now. I hoped the medication was going to kick in quickly and do its thing but that was wishful thinking - eight weeks is a long time if you think about it. I was given all the medication I needed to take home, so I just had to organise myself and figure out some kind of routine to work to. Although the steroids soon took effect and gave me some relief I was still in a lot of pain, struggling to look after my own children or even get out of bed in the morning. But I did do it. Despite everything I am a determined person (Mike might say stubborn!) and I will never give up on them and I certainly won't let this condition beat me.
Next time... figuring out routine and medication gets the better of me.
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