A Bad Day

I guess that I am having one of those bad days filled with the frustration that despite the pain in my right knee and hip, (and yes if they get much worse I really can only see one option, and that is very shortly I will have to use a stick to get about) I should be achieving much more than I seem capable. This has got me to thinking of how it feels to be me right now. How best to describe hat I feel like when under attack. And the best analogy that I can come up with is that I have always been a full speed 18-20hour a day person with the ability to slip into top gear and stay there at full tilt for days/sometimes weeks on end. However at the moment I feel like a push-bike with several intermediate gears missing, so that I find it very difficult (mostly all but impossible) to get into top gear, and the shear effort of getting there when I manage I means that I no longer have the energy to sustain it for anywhere close enough to get me over the brow of the hill. Indeed at the moment I find the thought of the effort required so overwhelming that I have little motivation to even try. More often nowadays I have little enough motivation or energy to even set off on the journey, even in a very low gear.

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Adrian....felt that way the other day when I rode my bike and walked too much in one day. The next day, my eye swelled up underneath and pain in my back and occasionally in my legs. I got a deep massage yesterday and it helped my pain a lot. I also have a herniated disc in my lower back which could cause the pain too, sciatica. Today, I am going slow. I don't push too hard some days. Trying to tackle house chores today and already know I am doing too much. So, I sit down, take a break, even if it's an hour break, and try to continue. Sometimes feel too tired to just get up and try. I know how you feel. I think you should start writing though. You have a dramatic flair in the way you describe your life. I am starting to draw again. Use to draw all the time when I was a kid. Stopped a long time ago. Taking an art class with the library is motivating me to start again. I am excited about it. Hope you can find an alternative to things not being the same. It's very hard sometimes.


Wow, that is a perfect analogy even for a couch potato like me! I used to be like that too. For 4 years I was on disability. At 55 I went back to work. Now I am 62 and pretty well controlled, but daily naps are essential. In the 11 years since my diagnosis, I have noticed that a majority of people with lupus seem to have been over-achiever type A personalities before getting sick. One can't help but wonder about the role stress played.

When we compare where we are now to where we used to be, it is easy to get frustrated. If we can't carry on at the pace we once did, it's hard for us to even start. One of the things that has really helped me is to change my perspective from a "to do" mentality to a "done." mentality. Instead of making "to do" lists and feeling discouraged because I can't get it all done, I keep a steno pad nearby and write down what I have gotten done. It's a little mind trick but I find it really helpful.

Wishing you all the best.


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Me too! I thought I was just getting old and unfit before my time - even though I walk all day, used to be a Special Needs teacher, go sea kayaking, love gardening, and so on - all outdoors stuff (except for the paperwork when I was at work). Gave up work early as I felt Life was slipping away too fast ... I guess we just do what we can do, when we can do it, and then do something quiet for those other days. Thank goodness I found this forum recently - I am not alone :)


Love the terminology, Adrian. That's me, right down to the missing on the horizon with regards to rheumy, or proper treatment????


Well got something of a shock today at GP surgery. My tests were all back and his terminology was that my results were complicated. After giving me a bit of a ass-kicking for not keeping my pain relief topped up he told me that not only had my old GP had a rethink and referred me to a rheumy in DRI but he was going to refer me to Chapel Allerton as they specialize in Lupus, so where I was seeking 1 referral I now have 3, including a referral to ophthalmologist.


Though the blood test results being complicated isn't such good news, the fact that you're now being referred is great. Any indication why the results were complicated?


The "gears missing": YES!!!!! Grrrrreat vent, Adrian.... I know this syndrome well: you've nailed your description of all this....GRRRRR: no fun at all

Congrats on the referrals: WHOA!

And good luck


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