I thought it was time to post an update on where I'm at with my health.
- It looks like I've developed Sjögrens syndrome, an autoimmune condition where your immune system attacks glands that make moisture. This seems to explain my swallowing issues (which seem to be due to a dry mouth, and have gone away since I've been a bit more careful about drinking regularly). The dental hygienist has suggested some products I can try if it gets worse. It also explains my dry and scratchy eyes. For that I'm now using eye drops every 1-2 hours, which helps heaps but is a pain to do! I've been given new drops to try that might work for a bit longer, but I decided to finish off the current bottle before I open those.
- It also seems that I've had a recurrence of my concussion symptoms, which is where the brain fog and nausea fit in. It seems there's some medical controversy as to whether this can actually happen, but my symptoms are responding to the treatment that helped with the concussion, at least. My GP is of the opinion it doesn't much matter why this has occurred, seeing as I've found something that's helping!
- I had basically continuous nausea when last I wrote, which was worsened by swimming, walking and bending at the middle. I now only have nausea from walking (and likely from swimming - I haven't done that for a bit to know either way). I'm doing de-sensitisation exercises for the walking and am up to 10 minute walks as of today; I hope to be at 1 hour walks in another five weeks!
- I'm hoping to re-start swimming when I can walk more than 20 minutes without nausea, as swimming at Blockhouse Bay involves a 10 min walk down the hill and 15 min back up.
- I still have significant brain fog. I'm hoping to work on that in a more systematic way when other things are a bit more stable.
- I'm really struggling with people contact. I've been to church for an hour a couple of times, and that's very much at the limit of what I can do. I also get pretty worn out with visitors and phone calls, but I'm managing to see people by setting a timer and telling people when I need them to go away :-)
- I still have phenomenal fatigue. Six weeks ago, when last I wrote about this, I had reduced down to 5 hours up a day and that seemed to be working well. About two weeks ago I had to acknowledge that was no longer the case, and felt I probably should reduce it to 4. That felt really, really hard. I also realised I'd responded to the 5 hour limit by being very 'on the go' all the time I was up. So I decided to reduce to 4 hours of active stuff per day, but to add in 30 minutes of sewing or reading as well. That's actually been really nice and has made me feel a lot more human! It's also made me less stressed about some birthday presents I was struggling to get around to making. A few observations:
- I was wondering if the CFS had gotten worse again, but I don't think so. When I was healed back in 2018, the first thing I noticed (before I even got out of bed that day) was how much more easily I could move. Even though my muscles were crazy-weak, they were heaps more responsive. At the moment, I'm definitely losing fitness and strength as I'm less active, but I don't feel I have that non-responsiveness I used to have. Around 10 days ago I started a 4 week trial of D-ribose (which I found really helpful for the CFS back in the day), but since I've realised about the muscle-responsiveness I have much less expectation that it will help - I certainly haven't noticed anything obvious from it thus far.
- Pulling back my daily activities so much has given me a bit of 'margin' at the moment, so I can do a bit more on some days without paying too badly. Yesterday I was up for nearly 7 hours (mostly due to doing a big bike ride with Martin - I can't walk far but cycling is, wonderfully, fine!). Today I've been pretty tired (and have only been up for 3 hours so far and it's 4pm), but I'm not completely destroyed by it.
- The horrendous abdominal pain I was getting earlier is definitely fatigue-related. So long as I don't overdo things it doesn't appear. Which is nice :-)
And now for some photos of things I have been doing.
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| As well as sewing gifts I've been working on patterned darning. I'm inordinately proud of the zigzag darn on the heel of my bedsock :-) |
