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As I write today’s post (by hand first, because I’m old-school), I’m using my big fat pen. It still hurts my hand but compared to a normal pen is luxury. Some days I love it – it makes me feel as if I don’t have to pretend or struggle, it makes me feel different and privileged. Some days I hate it and use a normal pen because I get so ashamed and hate that it attracts attention. Comments like “that’s a fair pen”, “oh wow, you won’t lose that pen” and so on. I feel the need to explain myself or I just awkwardly laugh and feel embarrassed.

Some days I make myself go the day without any ibuprofen, holding firm in the mindset that ‘the pain will continue so I best get used to it’. Other days, I feel that if I have the opportunity to do anything to help myself, I should take it – be it physical or emotional. It’s the advice I’d give someone else, so I need to stop fighting myself on it! The chunky pen, a microphone for lectures at Uni so I don’t have to write notes, an electric tin opener or special gloves, the list of little things that can help ease the pain and stress goes on. But, from medications to letting others help and using accessories, I have ups and downs with all these things. Days where I appreciate them, days where I hate them - every day is different.

Are you a planner or do you go with the flow?

Planning ahead can be a good thing, but I often find myself worrying that if I commit to plans, I’ll feel worse if a flare-up means I’m unable to stick to them. I had times of worrying, thinking I should err on the side of caution, which saw me saying no to something I really wanted to say yes to! So now, I try to just go with the flow - go with what everyone else wants to do. If I’m always thinking about it, about what I maybe can or can’t do, it means I have let it control me, control my life; it means then the arthritis has won, and I won’t let that be!

All the questions, all the anxiety…

To be honest, I’m still figuring all this out, so I have no idea if this mindset is the right one. Maybe I should be more cautious and plan ahead? Should I be looking at it in terms of me versus the arthritis? Or should I just continue as I am, trying my best not let it affect me? So many questions and no clear answers. Is it just me that thinks like this or do most people? Am I alone or do I just need to reach out and help myself by trying to help others?

Some days, all I can see is other people looking at me. But maybe they’re not thinking ‘why is she using a fat pen’, maybe they’re thinking ‘why does it matter what pen she’s using? Why is it bothering her that she has to take ibuprofen? Why does it matter if she has to cancel her plans?’ Maybe, just maybe, not everyone is judging me!

I’m aware that my perceptions of other people’s thoughts may be far from the truth (a topic I’ve covered in therapy a few times!) To a lot of people, things like this must just seem insignificant. But to me, to us, it could take up all your strength for the day – physically and emotionally.

Going forth into the unknown…

As with most long-term conditions, the focus for a sufferer isn’t just on the daily symptoms. There are so many factors flying around in your head that it becomes difficult to hear yourself think. It’s like trying to see through clouds on a daily basis. No doctor’s appointment could ever be long enough to receive a full explanation or get full insight. That’s where I hope we can all come together…

We are not specialists and we do not know everything, but we know how we feel, and we know what our bodies are telling us. Just as importantly, we know what is going on in our heads – something that is too often overlooked in doctors’ appointments.

We could spend hours, days, even weeks Googling and trying to find answers, but don’t you think that having each other to lean on would be far more valuable? Whatever our experiences, let’s share them and learn from one another.

We need to stop hiding behind shame and privately searching the web, hiding away from others who can help. Instead, let’s shout out and be there for one another! I hope you’ll join me.

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