There are many times in a life with Autoimmune diseases when you are confronted with the painful question of whether a period of extreme pain and difficult symptoms may be just a passing flare in your existing diseases, or it might be the new normal.
The words strike a fear in my heart even as I write it. Indescribable.
It has been my experience over the past decade or so, that it can be either and both. There is really never a way of knowing.
Some things have worsened and flared for a period ranging anywhere from a few weeks to several months. And sometimes they never lessen or settle and I have had to add them to the forever list.
Although doctors may recommend steroid treatments, and other drugs, to help resolve some things but they don’t really know if it will work.
# I should also mention that IV / steroids and medications are not easily tolerated or successful, and they have some very difficult side effects. Very!
Every time something worsens, or a new symptom comes along, I go into a panic. I can’t seem to help it. Perhaps it’s my fears running amok. I wish I had better control of it after all this time!
It also feels incredibly unfair.
There have been times that I have given my body over a year before telling a specialist of the new symptoms in the hope it might settle. I certainly don’t recommend people do this. I just feel I owe my readers the truth.
In fact it might be more truthful to say that I have often chosen to wait, probably too long, in the hope it will improve… even if it is a vain hope.
Sometimes when you have collected a long list of diagnosis, it makes you not want to hurry back for even more diagnosis. Especially if it is another incurable issue or progression of your current problems. No one wants to know that their illness is progressing; I truly don’t think I am the only one.
Also. Sometimes it can be difficult to know what is an existing problem flaring, or what is a new disease or problem arriving. Yes. True.
For example, I didn’t know that my pancreas was failing and slowly shutting down and not working properly (EPI), or whether it was my IBD flaring. The pain can be indistinguishable.
Diagnosis meant even more medications and, sadly, it is also incurable. My heart was heavy. I felt overwhelmed.
It feels like everything is completely out of control and I am simply being dragged through life by a failing and unpredictable body. It is physically and emotionally painful.
If you are going through a similar time where your illness/es have worsened or you have been diagnosed with further illnesses then my heart goes out to you. Truly. I wish I could reach through this screen and hug you!
It takes time to come to terms with the new normal and it is not easy. It’s a completely new grieving process and a new identity; again.
Please be kind on yourself while you go through it all and surround yourself with things and people who truly empathize and care. That is the only way you can hope to make those next important steps. Slowly.
Sometimes it isn’t easy finding the new normal and no one can tell you how you can or should do it. But I hope you will admire yourself for the amazing strength that it takes. Every. Single. Day.
In my opinion it is the hardest thing to do. Ever.