I am going crazy waiting for appointments and going stir crazy not working.

I've also been off since April and I'm having the same problems, I hope you're getting better support from the teaching profession then I'm getting from mine, the NHS

You have my sympathy.  I, too, was a teacher when this stuff hit hard.  I dragged myself through my last two years, but then I retired. I just couldn't manage all the work that goes into teaching college-prep classes any longer.  I didn't feel useless about not working, but now that the CFS is worse, I feel useless when I can't do all the things for my grandchildren that  healthy grandmas do.   

The problem with ME is (generally speaking)  people know little about it and unfortunately some Medics still question it's validity as an an illness. In respect of help, you could  check if there are any support groups in your area.  They can be helpful, but some can be a tad gloomy. I resonate with your feeling of not feeling useful, however, it's not your fault that you've succumed to this horrible illness. In fact, it seems there's a pattern of those who give more than their resources in energy terms who tend to succumb to this condition. I wish you luck in your journey

c

Yes, this condition makes me feel a multitude of things and one of them, at times, is useless. It's tough, you're on roller-coaster, especially six months in when you're trying to get to grips with things. I haven't been able to work since early 2011 which, for a workaholic, has been a pretty hard pill to swallow.

I know how you feel but you have to find things which keep you going. Don't overburden yourself and don't give yourself targets to hit but find enjoyable things to do which don't exhaust you. I love to learn so recently I downloaded a language app and began learning Swedish. Sometimes i do five minutes a day, sometimes i don't touch it for days but it gives me a sense of achievement, it works my brain and it's something i can do at my own pace.

Help your body. Stop whatever activity you're doing BEFORE you begin to feel too unwell. Take breaks between activities. Let your brain rest, no tv, no books, just lie down, put on some headphones and listen to a relaxation track. After a multitude of treatments, is the only way I've found of controlling my symptoms rather than allowing them to control me. You have to find what works for you.

Easier said than done, I know, but try not to beat yourself up. Yes, you want to be working and doing and being useful but right now, through no fault of your own, that's not always an option so give yourself a break. Do what you can when you can.

As for appointments, the best thing you can do is be proactive, ring up and get yourself on the cancellation list.

Right, I'm probably ranting or rambling but it's five to two in the morning and I can't sleep so I hope you'll forgive me!

All the best

Did "they excluded everything else" include a test for Vitamin B12 Deficiency? 

Hi there katoreo,

I miss my working life too as I loved my job and still have hope of returning some day. As mentioned already, resting is key and getting the balance between rest and activity is difficult. My own experience is that my mind happily forgets I have this condition when I'm having a good day and so I'll do more than I have in the energy reserve tank only to leave me kicking myself when I'm bed bound the next day. It is a very strange condition and often misunderstood. On the plus for you, you have a referral although it seems a lifetime away, 4 months will pass quicker than you thought. I go with zombie nichola's idea of asking to be called/written to of a cancellation.

It is hard to sit back and feel you are twiddling your thumbs and coming from such a busy job as a teacher prior to this will leave a big gap in your life right now. At present, the difficulty lay in accepting that to hopefully get back to your job, you have to accept this time out. Work with it, not against and and don't push yourself.

I was a keen walker before this and miss that too. What hobbies did you enjoy before? Are there anythings that you can do now that you couldn't when you were teaching? Yoga, meditation or really relaxing can be helpful. Massage can also unless, like a friend of mine with this, it causes more pain. What I've also found useful is looking at what I have achieved rather than what I have not in a day. Yesterday-I know I did too much as I had appointments to attend that were important. Today, I must rest because of this. I was so busy doing these things that I didn't think that I could rearrange any of my day.

I really feel that resting with small amounts of activity, being gentle with yourself when you over do things, asking for help (this one can be very difficult indeed) and being mindful and accepting of our limitations are the main considerations. People do recover from this and that, I feel does give hope.

Beverley

Yes, stomach problems have a connection to ME.   There are very many people with ME that struggle with IBS. I do better when my stomach problems are under control. I will private message to you the name of a book that  I originally  checked out from the library which can explain a lot about ME., including the stomach connection.