Recently I managed to misjudge the amount of tablets that I had and ran out before I could order more. As a result, I was without my anxiety medication for a few days. I could have borrowed some from the chemist but I decided to wait until it got sorted. In hindsight there were some factors leading up to this.
At a recent psychiatric appointment I happened to mention that I hadn’t been feeling physically well for a while and was trying to address this with my GP. The psychiatrist asked me what I was experiencing and I told him about the nearly constant headaches and stomach upsets. The psychiatrist looked over my file and told me that the dosage of anti-depressants I am on is a very high one – which I knew – but that sometimes, there can be a build up in the system that can lead to physical symptoms – which I didn’t know. He suggested reducing it to a lower dosage and seeing if this made a difference.
I agreed to it while inwardly screaming, and not for the first time:
Why, in all of the times I have asked for a medication review which might cover this sort of thing, has no one take me seriously?
Why does no one mention these risks when putting patients on medication, not in attempt to put them off, but to let them know what to be aware of?
In my years of being a patient in the mental health services, I have never received the same advice or guidance from two doctors in a row. One says I need to come off one lot of medication. Another thinks I should be on more medication. Another thinks one lot is inadvisable, even though it was previously recommended. I am lucky in that I have an excellent GP who knows me very well and can give me the appropriate information and leave me to make the final decision. Many people don’t have someone like this. When I highlight it to the directors of the mental health service the responses I get are fob-offs: “Oh yes, we understand”, “We have plans to…”, and, “As previously stated…”
In light of the frustration, I think there can be some defiance in wanting to try to manage without my medication; defiance and self-protection (“If I don’t need the medication anymore, they can’t keep causing me this confusion…”) At first everything is okay. But then it gets to evening and I can’t sit still. I can’t focus enough to read or watch television. My thoughts speed up and go nowhere I want them to. Most annoying of all is the physical aspect – legs that constantly need to move, a feeling of not being able to sit still – basically a sense of wanting to shrug off my body and run away from myself.
The lesson from this is, of course, not to try this at home. If you need to change medication types or dosages, only do it under the guidance of your doctor and go as slowly as you need to.
Eventually I get the prescription sorted and take my medication. The difference is immediate. I can sit and relax and the need for constant movement and racing thoughts is gone. The shoulder pain, the headaches, the physical toll of being on edge all the time starts to ease. It’s a huge relief and it makes the next day easier to face into.
I think the moral of this story is to say that we need to be aware of the stigma we cause to ourselves and that we need to become our own advocates, particularly if there are inconsistencies and shortfalls in the services we rely on. Medication isn’t for everyone but for some it’s the difference between functioning or not. Sometimes it’s needed in the short-term and sometimes longer. We need to know that it’s okay to speak about and okay to question when a new medication, dosage or treatment plan is discussed.
Some of the question I know ask look like:
What do we hope this medication will do?
How long will it take to know if it’s helping?
What side effects should I be aware of and what side effects can, or should I, tolerate?
What are the long-term issues I need to be aware of?
Will the positives outweigh the negatives?
This last question isn’t always viewed with approval but I think it’s an important one to ask. If a medication is supposed help with anxiety, will I still be able to do my job which also helps with anxiety and quality of life? If a side effect is weight gain and I have anxiety around this, how do we monitor and manage this? The doctors are the experts and certainly the only people who can guide us safely through using a medication, but we know our bodies and what they need. We know what we need to have a good quality of life and it’s certainly within our rights to communicate these things.
Sadly we are part of a failing system that often doesn’t adhere to the idea of ‘nothing about us without us’ which can focus too much on the here and now of an appointment and risk assessment rather than the overall holistic view of the person. This needs to change. Recently the whole country put such energy into Darkness in Light and it shows that same energy and proactivity exists. If it went into our health service, imagine the changes it could bring about? We shouldn’t have to rally or fundraise for the most basic aspects of healthcare but the reality is, we often have to
Let’s advocate for ourselves and for each other. Let’s use our voices.
We are all experts on ourselves.
“Brains are like toddlers. They are wonderful and should be treasured, but that doesn’t mean you should trust them to take care of you in an avalanche or process serotonin effectively.”
― Jenny Lawson, Furiously Happy: A Funny Book About Horrible Things