I don’t generally make New Years Resolutions. Every year I just hope that it will be better than the previous year. After a mostly-hellish 2015 I don’t think that will be hard to manage.
This year, however, I resolve to be resolute. The most useful thing I’ve learned about EDS from healthcare professionals since being diagnosed 18 months ago is if you want good care you have to fight for it yourself. If you get apathetic, you’ll slip through the net. So, in 2016, I resolve:
1. To insist to my GP that I need a rheumatologist. She has refused to refer me twice on the basis that a) I have already been diagnosed and b) I have a pain specialist and a cardiologist already. But when I go to see a GP whilst in the throes of a fatigue crash, EDS never comes into it and I am invariably sent for a pointless “generic tiredness panel” of bloodwork which all comes back fine, wastes NHS money and resources, and doesn’t teach me one bit how to manage in the future with reduced energy and ability.
2. To get an Autonomic Clinic referral, somehow. This referral was one of the things my July ’14 diagnostic letter promised me, along with a GI specialist and specialist hand and foot assessments. None of them materialised once I was discharged back to the care of my GP. When my autonomic symptoms increased drastically early in 2015 I asked for a referral again. Dizziness, blackouts, nausea, random fevers, lack of controlling one’s body temperature – these things aren’t really fun. Then I asked again in October to be told that my cardiologist should be referring me instead. My next cardiology appointment is in MAY. Time to bite the bullet and call the secretary…
3. To stick with therapy (unless it becomes deleterious to my mental health). The therapy my psychologist has recommended to me is Mentalisation. It’s shown to have better results than CBT for patients with emotional instability. What scares me is that it starts off with 6 months of group therapy. But last year I promised myself I would go to therapy, and this is it. I’ve never completed a full course of therapy in my life, except when I was actually in hospital and had no choice, but last year, when the fog lifted from the worst mental health I’d suffered in some years, I promised myself I would go back to therapy and STICK at it and try to make some progress.
Also probably to blog more. Having poor mental health or too much pain generally means that I’m not up to writing long pieces (or even short pieces). This is why Twitter is my medium of choice for writing, to be honest. I can’t get too distracted in 140 characters.