I’ve been a bit MIA on my blog lately, as life has just been jam-packed full of activities and appointments. Now that I have a bit of time up my sleeve, I thought I’d give an update on my arthritis. For those that haven’t read my previous blogs, I have Seronegative Rheumatoid Arthritis, which developed after I got Reactive Arthritis as a result of getting salmonella. This was back in December 2017 and things still aren’t back to normal, but they are improving – here’s how:
- I had a terrible sleep on Saturday night, so much so that I actually only slept for about an hour over the whole course of the night, for no particular reason that I could tell. It was a humble reminder that only a short 7 months ago, I was having to get up every two hours in order to take pain medication to get through the night (and day) without being in excruciating pain. In terms of pain, I have come a long way.
- A couple of weeks ago, I had a rheumatology appointment at the hospital to see how I was going. There is still a small portion of active inflammation in my joints (those affected for me are; both ankles, both knees, both elbows and both shoulders), but overall, it has significantly gone down since my first visit with my rheumatologist. In terms of active inflammation, I have come a long way.
- I started driving about 2 or so months ago. That means I had about 6 months without driving and without having any independence. That was hard for me. I still get a sore leg after driving, and the parking isn’t great where I work, so my mum still has to drive me to work and back every day, but I’m driving outside of that, for social events and errands. In terms of driving, I have come a long way.
- This week, I had my first physio appointment. I had asked to see a physio as I am still having trouble walking properly, as well as getting the sore leg after driving. It was a great session and he said I haven’t done any damage, but just need to improve my strength – something I already suspected but appreciated hearing. I think back to when this first happened and I couldn’t walk at all on my right leg (where I first got the inflammation). I was then on crutches for about 5 months and have since been using a walking stick. I still have the walking stick, to help when I’m having to stand in the same spot for ages or when I need to walk long distances or generally need some support. In terms of walking, I have come a long way.
I still have a long way to go; I can’t ‘go for a walk’ yet, I’m still using a walking stick, I struggle to stand in the same spot for too long (e.g. showering and cooking), we’re still trying to figure out what treatment will work best for me, I’m still coming off the steroids, I still need to try and lose the weight the steroids caused me to gain, I still get sore if I push my self too hard…. but, I’ve come a long way.
The rheumatologist has said that it’s more than likely that I will be living with this arthritis my entire life, but as long as I take the medication/once we’ve found the right balance, I should be able to live a ‘normal life’.
The physio has tasked me to try ‘pacing’, i.e. with walking, spend a few days trying to figure out how many minutes I can walk at once (I’m doing after work), without pushing myself enough that I need a rest. I then need to calculate the few days together and figure out the average – I’m thinking it will be about 10 minutes. Once I’ve done that, I need walk for that amount of time every day for a week. If everything is going well, add another 10% on for the following week and so on. This concept is based on trying to stop or discourage a cycle of overdoing it and then needing rest, then overdoing it again once you feel better and round and round it goes. What we want, is to build up my strength slowly so I can function on a day to day basis without needing to take a day of rest in between. I also have a few exercises to do, one I can do at my desk at work and the other I need to do at home with an exercise band (pictured).
It is a slow and steady journey, but I am getting there!