Drawing conclusions is never easy

My experiment with antibiotic therapy will soon come to a close. I’m due to see my consultant at the end of next week, and the new GP the following Monday. Things had improved quite a lot in March and April with fewer flare-ups than I would otherwise expect. Energy levels were still pants, but I don’t know that the antibiotics would have improved that aspect of the condition or not.

Things took a turn for the worse in May. I had some kind of pain or flare up for half of the month. Most flare ups weren’t particularly BAD or debilitating, but it did lead me to wonder that perhaps my arthritis was just mild in March and April rather than it being due of the antibiotics working any magic. So far in June, I’ve had pain almost every day. Again, nothing too debilitating, although annoyingly it’s been in my knees more times than I would like. Nothing’s been so bad in the past week that I’d need to take any time off work, but it is still pain and I’d rather not have it!

So, I’m forced to wonder that if it is working, is it working enough? Should I take it for another three months to see if it’s stopping all the really BAD attacks, or should I just give up? Should I see if I get worse if I stop taking it? Or should I move straight onto methotrexate?

I’m not that disappointed – after all, at least I haven’t had any really debilitating flare ups in the past three or four months. But I’m just weary of all the questions and decision-making. Not for the first time, I wish that the medical profession understood my condition better. I wish there weren’t so many uncertain choices to make. And I wish that the drugs on offer didn’t have so many scary-sounding side effects.

On the positive side, my energy levels have also been inconsistent – which is a positive thing, because it’s meant that some days, I’ve had lots of energy reserves! On some days, I’m still waking up feeling as if I’ve had no sleep at all. On others, meanwhile, I’ve had an excess of energy! I even managed to find enough energy at the end of a working day to dance on stage with Angelique Kidjo when she played Manchester, (along with around 15 other people). It was a totally exhilarating experience and I was so proud of feeling brave enough to do it! I’ve managed to be relatively consistent with going to zumba and am still cycling most of the time. Some days, I’ve even had enough energy to cook a proper meal at the end of the day. It happens so sporadically during the working week that it seems like a major achievement whenever I do manage it!

I’ve also been assessed for Access to Work benefit, which is something that I only recently found that I was eligible for. I was surprised to find that the in-work assessment was actually useful than I expected with a number of suggestions and recommendations that I might follow up, whether or not I get funding for them. I’ll write in more detail about it in another blog – probably when I get the assessment back in writing.  I’ve actually got quite a lot of work on at the moment – hence the scarcity of blog posts – but I haven’t forgotten that the blog exists and will do my best to update on both the assessment and in the consultant appointment as soon as I can.

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2 responses to “Drawing conclusions is never easy

  1. Have been following you blog and was very interested in seeing any positive results of your antibiotic therapy. I admire your determination in finding the right option for you but i feel i must tell you how methotrexate gave me my life back. I was constantly suffering flareups that would see me bedridden in pain. Little things like brushing ones hair would see me in tears from the pain of trying. I have been on methotrexate for nearly a year now and only now experience minor aches but nothing to dissrupt my life. I am one of the lucky ones who do not experience any major side effects. My mother who suffers RA has been on Methotrexate for 7 years and still has great results. Not saying this is what you should choose, just to weigh up all options. Wishing you a pain free life. 🙂

    • Thank you so much for your comment. It’s so easy to demonise the drugs, especially if you only hear the bad things about them. So, it’s really good to hear individual positive stories. I’m really glad that it’s working for you.

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