@chronicallykatie, I'm really sorry to hear that you're struggling with ME at such a young age. I completely sympathize with your frustration on missing out on a normal life and instead having to constantly deal with this wretched illness.
There are various treatments for ME, and some of them can be very helpful for different people, but their effectiveness varies widely among different people, and there's no magic treatment that works for everyone. However, there is a lifestyle treatment that helps many people improve somewhat, and most importantly, is crucial for preventing ME from getting worse. This treatment is pacing.
As I think you know, ME can get a lot worse than it is for you now. In my case, it has been 21 years since I have been able to work at all. Pacing can help reduce the likelihood that your ME will continue to worsen, and without proper pacing, other treatments cannot have much of an effect.
One of the most important elements of proper pacing is not pushing yourself to do things that make you feel worse. If you do push yourself on a regular basis, your ME will get worse, and it may be very difficult or even impossible to recover your lost ground. Proper pacing means stopping and resting
before you've done too much, not afterward. One rule of thumb that many people use is not to do more than 50% of what you think you're capable of doing. In other words, never use up all your spoons.
I say all this because you say you are struggling to do a part-time job. Anything that involves struggling is going to make your ME worse, possibly permanently. Too many people have found this out the hard way. If you're pushing because you think you have to do that job, please realize that you are simply bringing the day closer when you are unable to do any job. Instead, for the sake of your long term health, it is essential to cut back on your activities until you are not struggling in anything you do.
I understand how difficult this is; for some people, it may be impossible. But the more you can follow this path, the better your long-term health will be. And although in the short term it may seem to make things more difficult for your marriage, in the long term it will allow you to be more present for your husband.
ME is difficult on all relationships. You have the advantage that your husband knew you were ill when he married you. This must also mean that he must love you very much indeed to enter into a marriage where this kind of illness is present. It is only natural to feel guilty about what you see as the extra work you are causing your husband. But such guilt is misplaced; you never chose to have this illness, and your husband knows that. If you and he work as a team in dealing with this illness as part of your lives, then no one has to feel guilty about anything.
Learning to deal with ME successfully in your life - regardless of its severity - requires changing a lot of the ways we view and deal with our lives. Fortunately, one person who has done this very successfully with ME has written a book that can serve as an excellent guideline. It's called
How to be Sick, and I strongly recommend it for both you and your husband.
I wish you the best of luck in dealing with your health, and please know that you can still have a good life even in the face of this illness.
