Today is M.E. Awareness Day and this week is also M.E. Awareness Week, so I thought I'd come and write something here.
I've lived with M.E. for 23 years now and it just doesn't seem to get any better. I think it's partly the disease process and partly the lack of coordinated care/treatment plan by any medical professional. Instead of viewing me as a whole, issues are dealt with as they arise - allowing them to arise when perhaps some of them didn't need to. For the most part I've been left to cope and worsen by myself - with absolutely no medical help. Instead of the life I dreamt of: a husband, children, home, car (and ability to drive), a job and money, I've got a dog and 6 lovebirds, and I live with my parents. At age 33, I have no independence; I am totally reliant on others to facilitate anything I do: from the food I eat, to the places I go. In short, it's not a life, it's an existence.
Since I last wrote, things have been very difficult for me healthwise.
Towards the end of 2013, problems that had been developing for years started to come to a head. They weren't M.E. problems specifically, but having M.E. and autoimmune thyroid disease increases the chance of me having these issues (and vice versa). The upshot of this is that I have been busy visiting doctors, hospitals, and pharmacies since December last year.
The end result is that I am now on the waiting list for a laparoscopy. In the meantime, before I can have the surgery, I have to have an MRI of my pelvis, and specifically my bowel. At the moment I have a provisional diagnosis of endometriosis. When you combine the M.E., thyroid issues and endometriosis, you get a big ball of ****. Until 2 weeks ago, I was unable to sleep as I couldn't get the pain under control and had run out of sleeping positions to try. After a change of meds, I am now able to get sleep, but I hate taking all these medications. It's a constant battle to be comfortable/not in excrutiating pain, and my ability to stand is even more impacted so I pretty much can't stand for more than a minute without suffering badly for it.
It seems as if I reached a point a year or two ago after which the endometriosis symptoms started to really 'run with momentum', like a snow ball rolling down a mountain gathering more snow and speed. I ignored it for a wee while as I just had no confidence in doctors. It had to get to crisis point before I was basically forced to go to the doctors by my family.
I'm also dealing with heart issues again. I have to see the doctor to discuss it. I'm dreading that. I find it difficult to advocate for myself - it's so draining. I just don't have faith in any of the doctors I see, so now I only seek help when I literally have no other option.
One of the things I feel M.E. has caused me is a progressive bodily breakdown. I have just added more and more things that are wrong with me to the mix. Every time I try to move forward with other areas of my life, something else goes wrong with my body. I feel as if I cannot catch a break. I might be good at planning ahead and pacing and knowing my limits, but I can't plan for these extra things.
I'm still taking the LDN - I cut the dose back to 3 mg as I was concerned about becoming used to 4.5 mg.
Anyway, I guess that's my awareness post - a fairly personal one.