i've had ME for about 4 years now, and i've been on all sorts of drugs and treatments - but without sounding too negative, nothing really made much difference. i've been on different antidepressants, sleeping tablets, drugs for balance/dizzieness, beta blockers for heart symptoms - you name it. i've also worked my way along the shelves of holland and barrett trying all the alternative options. an expensive and frustrating process.
the way i look at it, the nature of the illness makes you go through periods of good spells and relapses, regardless of what drugs you are taking. i dare say, some help with specific symptoms, but i am more like you in the sense that i think the best way to improve is by management of the illness and changing your lifestyle to give yourself the best chance of recovery. get the balance right.
i've had tread mill tests (!), an endoscopy, ECG's, EEG's, ultrasound, MRI, X-rays, pyhsio, and graded excersise. the trouble with the last two is that the physiotherapists weren't familiar with ME and couldn't understand why i could do more some weeks than others. they are used to seeing a steady improvement week by week, and ME just doesn't work like that does it.
i'm fortunate that i'm not often bed bound or wheel chair bound like some, but i have had quite a few spells in hospitals and an awful spell for a few months initially where i couldn't support my own weight to stand up - that was scarey. i was also sent to psychiatrists, like many ME patients, but thankfully all that proved was that i was suffering from a physical and not mental illness.
i am improving, and confident i will get better still. i was diagnosed as having POTS syndrome about a year ago, this is what i'm being treated for at bristol hospital at the moment. there is a connection with POTS and ME, and a large overlap in patients. POTS is caused by the way your brain and heart communicate and causes you to faint or feel like your going to pass out all the time, especially when you get hot (in shops etc). my ME began with quite bad heart symptoms (after an nasty viral thing), and has continued to be one of the worst elements of the illness for me - as well as the usual ME stuff. anyway, i'm on drugs for that, so i'll have to wait and see.
i don't know about you, but i often feel like everything is going on around me, but i'm not really a part of it. like we've been drugged or poisoned or something, its a really weird sensation. whats going on in our bodys eh? i'm sure one day we'll find out, in the meantime i think we just have to learn to cope and adapt, and stay positive.
Simon runs a record label, Pink Hedgehog, which has released a couple of CDs all proceeds of which go to the ME Association.
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