Monday, 12 May 2014

M.E. Awareness Day & Week

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.


  1. I am so sorry to hear that you've had such a rough time. Some things just aren't fair. I always think a coordinated care/treatment plan would make all the difference but I'm afraid to say I've not experienced this either. Sending you wishes of health and happiness.


    1. Hi Faye

      Thank you for your comment! I agree - having a treatment plan and someone who coordinated it would be amazing. It would take a lot of pressure off of having to manage all my different health problems.

      I've just been looking at your blog. Sorry you are suffering with M.E. too. Your blog is very pretty :o)