Day 20: Have you met anyone with the same illness? Did it help?
Yes! I've met some lovely people (mostly through the internet) who have either Fibromyalgia or IC and their support is a wonderful thing. Often it's not direct, it's just about their presence and knowing that there are people out there within reach who need no explanation of what you're going through - they get it. I've said before that other ill people in general are good people to know without sharing the same condition necessarily - there tends to be a level of understanding regardless of the specifics. I do genuinely feel quite blessed in this regard.
To give an example of why this is important, I spoke to a new recruitment agency on Friday and booked a meeting for next week. On approaching the conversation "I was diagnosed with Fibromyalgia..." I was pleasantly surprised to hear in return "Don't worry, one of our consultants has it so you don't need to explain yourself. Do you need to work somewhere which has a lift?"
Completely unexpected and really quite wonderful!
(My old horse riding tutor used to say this all the time - whilst it's fine in theory it didn't stop me wanting to slap him each and every time. It's rather like saying "expect to suddenly involuntarily leave the saddle!" Image from www.123rf.com)
Day 21: What networks or websites have you used for support and information about your illness?
Originally I stuck almost exclusively to medical websites, mostly Patient.co.uk to try to get a feeling for the mass of symptoms associated with FM in particular and just for reassurance I wasn't going mad. I'm sure we've all considered that option at least once!
I was already a Tumblr user and soon discovered that the Fibromyalgia, IC and indeed chronic illness tags were full of people willing to share their experiences and offer any help they could. This progressed into finding forums and eventually Facebook groups.
I've listed the ones I settled with and think are the cream of the crop in The Warrens tab. I find the Facebook groups are particularly good as people tend to be very friendly and open in answering questions on just about anything, and idiocy and nastiness just aren't tolerated. Mostly though, it's lovely to log in on any given day and find my dashboard full of inspirational pictures, thoughts and words. An easy and inexpensive way to start the day well!
Day 22: How do you feel you have been treated by the medical system? Explain.
Whilst I definitely had my share of frustrations with the medical system, I think generally I was treated quite well. I was initially treated under Gastroenterology which turned out to be the wrong department entirely, but we weren't to know that at the time and they were incredibly thorough and I must say didn't mess about in making sure everything that could be tested was.
I was at first still under the GP surgery I had been registered with at birth and they were particularly obstructive - a very "old school" practice which was pretty rigid in its thinking. If it wasn't fixable in one appointment with one prescription they were quite happy to behave as if it was anyway. Once I upped and left, I had a much easier time. I firmly believe had I not moved to the surgery I chose to go to I would still be undiagnosed to this day. Only there did they decide to really investigate all the symptoms, hurry through relevant referrals onward without delay and think a little outside the box.
As much as I and other patients often have legitimate reason to moan about treatment under the NHS, I'm still incredibly grateful for its existence. I dread to think what that first round of futile testing under Gastroenterology alone would have cost me otherwise.