It’s so very difficult to write about my chronic health without either dinging pity, or the flip side of “you are happy you are cured!” And it’s not that I don’t have very bad days, and very good days, but that overall how I am coping emotionally or mentally may or may not be directly connected to what I am dealing with.
It is true though I have many fewer “good” days than just not ideal, and then I can have really bad days follow good of just simply not great.
Our bodies are extremely complex, as too are our own experiences. I have very clear refractive RA. It should have started to “burn out” a few years ago. Instead that’s when I started to develop nodules- making it extremely important to reduce any risk of inflammation as nodules are associated with poorer outcomes for joints and organ damage- and after that psoriasis- another not ideal situation- and fibromyalgia.
A lot of more newly diagnosed folks have much faster access to the most recent therapies and while I never want to push someone to a therapy they are nervous about I am absolutely thrilled those are now real options. Because they were priced out of being my options, and I know for a fact what a difference they would have made, for me. Just being able to try them, and rule them out if they don’t work brings you closer to a truly personalised treatment. The faster we get to that the better.
So if anyone is reading this, or any post of my not so ideal day, and feels scared, I am sorry. If you are experiencing side effects you have every right to make it clear what your line is and what you will accept. Not all side effects are givens, hold onto belief in yourself. And if you have someone who can be an advocate with you, please do especially if you find yourself not being carefully listened to. Sometimes we can have symptoms that we can describe for our experience, but it may not be in medical texts framed the same way. This is when our medical team will try to fill in the gaps- often getting it right, but not always.
I aim to share the positive and the not so positive because life is complicated. It doesn’t get less complicated with overlapping health issues. It can though bring into sharp relief what matters most. And sometimes knowing someone else doesn’t have the outcomes that can be promised also helps- even to just to stop blaming ourselves over what we can’t change, and instead save that energy and use it on what does make our individual lives better.
I think we all want the very best for ourselves, but it is very different for each of us. In a non medical example the only moisturiser that works for me is a very cheap supermarket stocked item. But my cleanser? I have to very carefully budget for it as it is expensive but it actually cleans my face, not scratches it, or irritates it. And there is entirely one oil by one particular country that my skin likes- and not when put into their other products. And that includes my own facial oils which my face hates.
And I know this kind of restriction affects folks in different ways including diet, exercise, and other therapies.
This post brought to you by me deciding actually I did need more pain relief and more steroidal anti-inflammatory meds today. I hope tomorrow I can just rest as the prednisone is making me feel a little too good. I know it is protective but it also does make you feel amazing on top of that. So as the inflammatory effect wears off.. there may be a delay in how I feel? Not sure. Not willing to risk it.
But all of this, to bring me back to the opening, doesn’t leave me feeling bad.
The single biggest stress is not being believed as often I do have to take precautions like this to travel to assessments. I couldn’t travel without the intervention, but the intervention will mask what I am trying to get assessed, and so on.
No but I have some social events to look forward to and I think I have settled on my art projects to make. Including maybe not making an Elsa Mantua but something more SCA appropropriate. I can find another fabric for the mantua- it will use all the silver lace though.