single and overwhelmed
I have only recently been diagnosed and have been lucky to only have relatively mild symptoms. I went from 4-6 hours sleep a night, 50+ hour weeks at school, 50+km running, and trying to fix my dodgy house. Now I get 10-12 hours sleep, trying to manage 40 hours at work and nothing else. I am a high school teacher so there is very little options in flexibility other than losing days which also means losing pay. As a single woman with a mortgage that is horribly frightening. Most days I get to school, fake it through the day, then crash when I get home but I feel that I am still putting too much strain on my body. Has anyone else dealt with the NSW Department of Education? Any advice?
Welcome to the forum @CPIllawarra and much sympathy for the tough situation you're in. I'm sorry my words today aren't great (not having the best brain day) but wanted to say hello. I'm afraid I can only suggest looking at the 'usual' ME/CFS things (pacing, symptom management, depending on what you think about it maybe trying LDN, Ubiquinol, PEA or some of the other things that seem to help a little).
As well as asking here, if you haven't already the Emerge's infoline and telehealth nurse service (see https://www.emerge.org.au/information-line and https://www.emerge.org.au/telehealth-nurse-service ) are worth contacting - the infoline can be done via email as well.
Also, never doubt the impact of even 'mild' ME/CFS - it's still a very significant challenge and well worthy of sympathy and support.
Hi @CPIllawarra, Gosh, it is certainly extremely difficult to stay the course of our lives when diagnosed with ME/CFS. My heart goes out to you, knowing the twofold effect of managing the symptoms and keeping up with all that is needed to keep our livelihoods and financial securities intact. I sensed your struggle and fear as you worry about what to do. Having been at this crossroad in life myself, I knew I had to put my physical health at the forefront and eventually I weaned down my full time job to leaving it. Not that I am suggesting you do the same, but the key for me was the weaning process. You may find that happy medium that suits you best, or a way to maintain your full time role. Like any problem, communicating this to all parties with whom you share your working life, I feel is very important. Only you will know when to officially inform others, but before you do, perhaps speak to someone who may be able to help you nut out some alternative life plans and explore those possibilities. Yes, possibilities! they are out there... you just need to re-invent. Spend some time getting to understand the new you with ME/CFS and explore what is feasible, what stays and what goes, what's needed and get it all into perspective. One big think tank session and you will probably see the answers in front of you or at least a way forward that you are comfortable with, that may include informing others when you are ready. I'm not a teacher and haven't dealt with the NSW Dept of Education, but I'm sure within these Departments, there are private counselling services that perhaps you can access in regards to your career and health. Other counselling services may help as well. I'm glad you made the first step to reach out and join this forum.
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@CPIllawarra Much sympathy, I do hope you find a way to manage life so that you can keep working.
I am sad to say I didn't. I moved from full time work (teaching in the NT) to four days a week (community worker in a women's refuge) to having a baby and study (madness) to a slightly less crisis ridden community work, managing a small organisation 4 days a week, to such bad health I've been on the disability pension ever since (on the plus side, my daughter managed to grow up and leave home).
I thought I was taking ME/CFS seriously but I still kept pushing myself so that it settled in and became intractable.
If you have a good doctor, talk to them about options, and if you aren't a member of the teacher's union, become one quick smart, they may have some good support for you.
Sending you best wishes and all good things.