Laura’s Pen looks back at 2016, and forwards to her hopes for the next year…
A year forward, a year past. 2016 has been an odd year for me. I seem to recall saying the same at the end of 2015 but this year has been odder still. While 2015 was the year of new symptoms, 2016 was one of revelations.
I started the year with a new diagnosis of Fibromyalgia, after spending the entire of 2015 having various tests, and was basically told to just get on with it. That diagnosis didn’t change anything and soon my ME clinic discharged me too, they had taught me all they could. I was left with the knowledge that this was my life now, and I just had to deal with it.
But I wasn’t happy with that, so I went on a mission. I experimented on myself with anything that seemed to stand up to my vague knowledge of biology. High doses of probiotics, different vitamins, then LDN.
Three months into the LDN I realised something odd was happening. Even on the lowest dose I constantly felt like my immune system was on full-fledged fight mode. The LDN was working, it was activating my immune system, but while everyone else on it felt worse just at the start or not at all, I could not shift it. I got down-beat. My mission was failing.
But then I had a couple of friends over and one was talking about the list of things she wanted to do before she was 30. It depressed me a bit. I turn 30 in 2017 and I was nowhere near those goals I had misguidedly set for myself when I entered my 20s.
But then I thought to myself: “What do I want do do before I’m 30.” And the answer was simple: get better.
So I renewed the fight and decided to look into that nagging doubt about Lyme disease. And the test came back positive. And it was bittersweet but it gave me something to try. On January 2nd I am starting a new treatment protocol with a specialist clinic.
And then a new symptom (pain during sex) sent me to gynaecology. One minor operation later and I had another diagnosis: Severe Endometriosis (that’s three diagnosises in a year for those who are counting). And that was a revelation, because it didn’t just explain the one symptom I went to them with, it explained symptoms I’ve had since I was a teenager, it explained symptoms that got worse when my ME kicked in again, it explained symptoms that suddenly got A LOT worse when my fibro kicked in, in fact, it’s made my question my fibro diagnosis completely, did the fibro make the endo worse, or did the endo get worse for some other reason and mimic fibro?
I can’t answer that question yet.
So what of 2017? Well, I’ll be focusing on the Lyme and letting the NHS investigate my endo symptoms further. Having a conversation with the surgeon when I’m not still out of it from anesthetic and pain killers would be a start! After some research, I’ve found that excision surgery by a skilled surgeon is the most successful, but there are only a handful of NHS surgeons doing this. But I’m hoping that if I let my surgeon do any further investigation (he mentioned MRIs) then get my GP to refer me to one of the surgeons in question for further treatment, by the time I get through waiting lists, I’ll be well on my way with the Lyme treatment and in much better place to cope with surgery and for it not to interfere with the Lyme treatment too much. This is the plan. But, as I’ve learnt, plans and chronic illness do not go together too well.
So 2017 is the year I turn 30 and my one-item-list of getting better is not going to be hit on time (see comment above about plans and chronic illness) but I’ve got a lot of hope that 2017 is the year I move much closer towards that goal.
2015 was the year of new symptoms, 2016 the year of revelations, and 2017, I hope, will be the year of progress.. *touches wood so as not to jinx herself*
I hope you all have a happy new year, one filled with hope and progress.
Love,
Laura’s Pen
The journey with ME seems destined to be complicated. Lyme disease is not acknowledged in Canada, although I did find an alternative doctor who is treating me for it. I have noticed some improvement. I am routing for your goal of getting better – and sharing the same vision here.
I am wishing you all the luck for the new year. May it be a year of progress towards getting better.
I will be 40 this year and every year I say this year will be a better year health wise, 2016 I was diagnosed with several problems and unfortunately there is no real proven treatment for EDS other than physio. My mobility is really poor and joints painful all the time, due to so many drug allergies I can only use heat pads to help the agonising pain. I hope you reach your goals, I want to get fitter this year with help from my PT but due to my PoTS, degenerative disc disease etc it makes it very difficult.
Sounds like your having a tough time Emma. I have mild POTs and found strengthening my calves helped a lot and you can do things like calf pumps laying down. might not be the case for you (or you might have already done it) so just ignore me if so! Hope you find a way to reach your goals x
Just stumbled upon your blog today through the Chronic Pain Bloggers Network. Wow, 2016 definitely sounds like it was a doozy of a year for you! I’m so glad you’re on track and seem to be getting the right diagnosises, though: having the right labels is so huge, isn’t it?
2015 & 2016 were similar for me too. 2015 I had new progressively worse symptoms; 2016 I was misdiagnosed with fibro and finally diagnosed with EDS III and Chiari Malformation. I also have chronic recurring ovarian cysts.
I sincerely hope 2017 is a year of progress and increased wellness for both of us! Looking forward to following your blog!