Again, another two weeks have passed since I last wrote. Flare-ups have been few and far between – mild or short-lived. However, my energy levels have varied from having bags of energy to feeling as if I have none at all.
Most days, I’ve found that I have the energy for SOMETHING, which is good, because I’ve had a lot of work on. However, by about 4 or 5, I’m often absolutely spent and, on some days, even having a conversation feels like a complicated thing to do! My eyes, meanwhile, feel so tired that keeping them open feels like a supreme effort.
One of my current projects is to lead a course for women on building their self-esteem and improve their job application (and interview) skills. It’s quite a cycle there (40 minutes each way), plus then I have to lead a two-hour workshop. It’s great work – very rewarding – but I am usually pretty stressed about it beforehand, put a lot into it during the course and then crash as soon as I get home. So, just two hours of paid work, takes an entire day worth of energy. Having expected that, I don’t tend to make plans for those afternoons. Still, it’s a drag.
I’m also getting really BORED of feeling this way. I accept it as part-and-parcel of how I choose to live my life. But I’m bored of it. I’m tired of being tired. I don’t want to end up giving up everything in order to conserve energy. What would be the point of that? At least this way I still have a life and still do things that I enjoy or that are rewarding (even if they are stressful too). Yet, I’m tired of answering “tired” whenever anyone asks how I am. And tired of my internal dialogue going “I’m so tired”.
This particular run of tiredness (it’s not quite as bad as fatigue and a total lack of spoons – at least I have SOME), coincided with me stopping taking my St John’s Wort supplements (which I was taking for depression). I’d felt so much happier that I thought perhaps it was time to stop. But, just in case the two are linked, I’ve decided to start taking them again to see if the energy picks up a bit. So, along with the hydroxy, the doxy, the calcium & D supplements and the glucosamine, the St John’s Wort is back on the morning menu again as from this week.
I’d be interested in hearing what other people have found improves their energy or fatigue.
I can’t believe it’s been 3 weeks since I last blogged. Time is certainly flying by. My doctor was happy to prescribe the antibiotics for another three months. We both agreed that while there isn’t enough evidence yet to show that it’s working, it’s also too early to decide that it isn’t! I will assess again with the new head of the practice when this prescription runs out.
I also finally had an appointment with a lovely doctor at the pain clinic at Wythenshawe hospital. He asked me a lot of questions about my lifestyle and about my pain, including whether I would work full time if I was able to (probably not!), how much exercise I did, and whether I didn’t have children because of my pain or for other reasons. He has referred me to the pain management programme but said that it was unlikely to have much to teach me given that I already use some mindfulness based approaches and am generally quite active and healthy. I have now had the questionnaire through for this and am thinking that it’s unlikely that I’ll be eligible. Additionally, the course itself takes place over five weeks for two full days each week, so seems to be aimed at people who are not in work.
I discussed the different pain killers that I’d tried thus far and the Dr had two suggestions. Firstly, he suggested that I take a nerve painkiller. Side effects could be cognitive problems – absent mindedness and forgetfulness (how could I tell?!) and fatigue/tiredness. This drug would be something that I’d take daily. I’m daunted by this prospect, and also don’t want to start a new daily regime until I know whether or not my antibiotics are actually working as it could confuse things. He agreed that this was probably the right decision at this time. I am also wary of taking a daily painkiller when I am not in daily pain.
He also suggested that for the very bad attacks, I now try a morphine based painkiller. “Either opiates don’t work with you or you just haven’t tried anything strong enough” he said. While the idea of taking morphine is definitely intimidating, those severe attacks are so painful, that I would like to at least try it once. As these very painful ones are so rare, I am not worried about the prospect of becoming dependent or addicted. If it doesn’t work, then we will also know that my arthritis pain attacks do not respond to opiates.
Finally, I’m happy to report that since I last blogged, I’ve barely had any pain at all. Again, it’s difficult to know whether that’s luck, a particularly stable period or the antibiotics. Whatever it is, I’m grateful for it.