Where to from here?

There’s so much going on right now that it’s difficult to know where to begin.
After much research, both verbal and online, I decided to change my gp. This is a huge decision for someone with fibro. There is a lot of negativity, judgement and ignorance around the disease.
It is a musculoskeletal disease, that effects the neuro system and transmitters. It means pain. In every inch of your body. Pain, inflammation, swelling, dizziness, fits, brain fog to name a few and is almost always associated with arthritic conditions. It includes chronic fatigue (mostly due to the pain) and some form of depression. Your immune system is compromised so infections occur regularly. Your eyesight is effected and migraine is also a common occurrence.
According to The Mayo Clinic in the US “

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Symptoms sometimes begin after a physical trauma, surgery, infection or significant psychological stress. In other cases, symptoms gradually accumulate over time with no single triggering event.”

For me, it started right after I had a life threatening infection. There is no cure. With the right help and support from medical professionals and the right medications people with fibro can get some relief from the pain and start to excercise and feel better. Flares however can still happen, and be quite debilitating. For most people, working while having this condition is impossible. 

The repeated use of muscles and joints increase the pain and while some activity and exercise is good, it’s very hard to judge what over doing it means to a fibro person. THERE IS NO CURE. It is a lifelong condition that needs to be managed. 

Older medical professionals, I have found so far, are quite ignorant of the new information and treatment available for this disease. Believe me, no one wants to have fibro. No one wants to be stuck in this no mans land. Yet here I am. 

My old gp never listened to what I was saying. Never took the time to understand or hear what I was telling him. This went on to the point of negligence. It took me a while but I eventually changed gps. I wanted to be sure, to not fall from 

the frying pan into the fire. So I researched and it came down to two. I picked the one that I thought could help me the best. This week I had my first visit. And how wrong was I? 

My appointment was for 12pm. I sat there for 40 minutes. At 12.40 I finally went in to see her. I had been told by the receptionist that since it was my first visit I would be afforded more than the usual 15 mins per person. 

The minute I sat down, her first words were “ I’m in a hurry, I’m supposed to be somewhere else by now, so make this quick”

I told her, I have fibro. Her reaction was to look down her nose at me and me say “ well what do you want from me?”

I explained, I was trying to get a new perspective, trying to get some support from the medical profession  as I’ve had none. I’ve also been told to get my blood pressure checked as I had it taken by another doctor a week earlier and it was high. 

She told me I was lazy. She told me that medication doesn’t help my condition and I need to come off it all. She asked me questions and then interrupted my answers. She kept looking at her phone. She kept saying she had to leave. She categorically dismissed anything I tried to say. She hasn’t time to listen to me, hadn’t time to print out my script, hadn’t time to fit me with a blood pressure monitor. So I got up to leave. I told her that she wasn’t an expert on my condition, she didn’t know me, didn’t listen to me, and I wouldn’t be back. She rolled her eyes and said she would make arrangements for me to come back the next day to be fitted with the monitor. With another doctor. Then I would have to come back the day after that again for my script. I explained that some of my meds were prescribed for me by specialists
and since she was neither a rheumatologist nor a neurologist that I would wait and talk to my socialists and ask them if I need to come off any of my meds. Then I left.

I sat in my car and cried. The nightmare I have going through for the past three and a half years rolling around in my head. The guilt I feel on a daily basis at not being well is incredible. I feel I’ve let my family, my business, my friends and most of all myself down. I want to live my life. I want to be better. I try so hard. I keep as active as I can, walking when I’m able. Though sometimes I can’t. It doesn’t stop me being active. I have my chair and I use that when I’m too exhausted. It helps me to get out of the house. I am a positive person but there’s only so much I can take. Added to the fact my application for invalidity has again been refused on the grounds that I “will get better” and I’m just broken. I have no income, I can’t work because I’m a hazard. I have spent 24 years studying and building up my business, I’m in the middle of studying for my degree to be told by this horrible troll of a woman to “try something different then”.
I am distraught right now. Raw and upset. I’ve seen 3 doctors in this practice this week and all 3 appointments ran extremely late. I realise patients can take more than 15 mins and I’ve no issue with that. I do however take issue with waiting 40 minutes for my appointment only to be told “I don’t have time for this”.

So here I am, yet again, at a crossroad. I fully get that this gp was at fault. Her other patients ran over time and I was the delay that she didn’t want or need. However, to sit at home a couple of days later and see the same gp on TV3 as a panellist regarding the housing crisis, and how she suffered, and how it has helped her understand people etc was hard to swallow. Yes she is self employed and has got herself out of some difficulties, but if she doesn’t take the time to listen to the people that put her back on track then it’s all for nothing.
I’ll take some time, I’ll lick my wounds and go back to the research. It’s all I can do really. A two year waiting list to see a rheumatologist is disgraceful but I’ve done all I can for now to try and get moved up the list. And I’m appealing the decision regarding my benefits.
Thankfully I have options, because sitting here, feeling sorry for myself isn’t one!

SharonAnn