I have to admit that I have had a tough start to 2014. I've been having a flare up for a while that has now reached it's peak, meaning now work and no going out, which makes it even harder really.
However the number one reason this year has been so tough is that I feel let down by the hospital I am under. So I made the decision that I needed to take control of this, so I thought I would share so of the journey with you so that you don't have to go through the same thing.
Before you visit your rheumatologist/doctor
One of the things I have found particulariy hard is trying to remember all the strange and unusual symptoms or questions that pop up in between visits. Maybe it's the brain fog, or simply that I have to get everything out in a short time frame of visits; in the UK normal appointments are between 10 and 20 minutes!
So I have begun to keep a diary listing anything that happens that, what is was doing when it happens and the date.Then before my appointment I can go through the diary and pull out a few of the items that I really need to ask about. It is all to easy to panic about every twinge so I only want to ask about the serious items.
Prepare the questions and think about them well in advance. If you suffer with brain fog, like me, then having someone to help you with this is really worth it. Once you have the questions consider what you want from the answers. This could be clinical or emotional understanding; both are equally as important!
In the exam room
Other than right now during a flare, I only see my specialist for a full talk every two months. That leaves me with a lot of questions to build up over time. The issue with this is that there is little times for questions once all the clinical talk is out of the way.
Firstly in the small amount of time I have, I need to remember that doctors are human too. I need to not speak really fast, confuse them, or be frustrated with them. I need to take a deep breath and go through each question slowly and precisely. Like me they don't have a lot of time either, so slowly and calmly.
Once the question is asked you need to focus. With so many clinical words, the answer you are given may make no sense or may be too hard to hear at times. If this happens politely ask them to repeat the answer and explain in simple terms. They should offer this level of understanding to you.
On the flip side, if you don't recieve the answer you want, then look for alternatives such as, your GP, your specialist nurse or a support group.
What to do if you are truly unhappy?
Sometimes finding someone to listen is tough! It can feel like we are hitting out heads against a brick wall, especially if you are recently diagnosed. The most important thing to remember is that this is YOUR health, no one else's and if your not happy you need to take charge.
Think very carefully about what it is your specialist doctor is not helping you with. It could be that you are not being heard, not being listened to or you are unhappy with the diagnosis. If you are feeling this then head for your GP. This is the first place and time for you to explain your concerns.
Be firm but fair. Ask if they can help to explain anything, contact the hospital or even put you I touch with new doctors.
It's a long process and sometimes we don't find the right fit straight away, but you will get there. Just take it one step at a time.
