Adapting to part time living - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Adapting to part time living

moimoi profile image
7 Replies

I have spent the last 2 out of 13 years living on a part time basis. This sounds odd but it has changed my life. I am more relaxed and consequently get things done, although rather slowly. Sometimes I feel 90 but I have gotten very good at acceptance.

In short I have a 2 hour window. Meeting friends, a bit of shopping or gallery visiting and I call it a day. Friends understand the rule. What it means is that I can do other things in the day you know like cooking, eating - just staying awake. If I obey the rule I can also do things the next day rather than having to rest for 2 or 3.

My body cannot cope with noise, vibration or stress so I avoid this as much as possible. Fortunately, I have a heated car seat - a blessing on a long journey or if the roads/pavements are rutted causing my muscles to have to adjust a lot. Ear defenders also take the edge of the constant loud intrusive music forced on us in shops, high streets etc. Avoiding crowded situations also reduces stress which again gives me more time to do normal everyday things.

Finding what works for you takes time and it is not failure to accept that life has to be adjusted. Take a deep breath and go with what is best for you - live your life.

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moimoi profile image
moimoi
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7 Replies
VanessaJoanne profile image
VanessaJoanne

You have hit the nail on the head!

This exactly describes me too.

adow profile image
adow

Excellent, I will share this with my husband, he is finding the balance difficult to achieve. Thanks for this.

Dka48 profile image
Dka48

Yep the same with me too, since i have adopted to this way life is so better to cope with :-) xx

newbe profile image
newbe

I have raynauds sjogrens and limited systemic sclerosis so fully understand the part time scenario. I thankfully work part time 19 hours a week and in the last year really appreciate my days off. Sometimes I get frustrated that I can't fire on all cylinders so to speak!! but have got accustomed to my limitations and the fatigue that comes with auto immune conditions. Thank goodness for this forum.

judyt profile image
judyt

It is called the SpoonTheory. You calculate how many spoonfuls of energy you have on any day and when you have used them all then you have to rest until you have filled them up again. Google "The Spoon Theory" and you will learn all about it.

zenabb profile image
zenabb

Yep I agree. Know your limitations and get organised to live your life.

titanicus profile image
titanicus

Your doing the right thing. You are still in charge of your life. The fatigue issue you can set your watch by it, but there are lots of things you can do in that 'window'. If I overdo something on a certain day it will take me 3 days to recover, but you soldier on because you are the boss. Take care n keep on keepin on!

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