Healthy people will know very quickly if they are feeling unwell or ‘off’ but when you are permanently sick and in pain it is a lot harder to recognise when something else comes along to make things worse.
Often we are so used to pain and fevers etc that we don’t know if we have an infection until it’s too late.
At the moment I am battling fevers, joint pain, stomach pains and nausea. Is it one of several AIs? Is it the c-diff infection my GI found? Or have I aquired a flu on top of everything else? It can be extremely confusing and almost impossible to solve.
I am sure many of you know exactly what I am talking about…
We take a lot of immune suppressing Meds that we are extremely susceptible to infections and germs. This is something we just have to learn how to accept. That’s the risks we take on. But living with the risks and managing the consequences can be very hard indeed.
Sometimes it makes us wonder if the risks are worth it. But the options are limited and not easy.
The same Meds that helps me with my pain and symptoms are the same ones that make me a target for any other infection or bacteria.
I used to assume every time I felt worse that it must be my AIs playing up or, worse still, progressing. Now I take a watch and wait approach… I have to.
But how long should I watch and wait? How long is a piece of string? It’s a real mind trap! I am sure many of you know exactly that awful mental battle.
Most of the time I have been ill I have had to become my own specialist and triage nurse. A crash course in diseases and medicines. I may not be an expert in AIs but I have had to become an expert in me!
Many fellow warriors and fighters are the same. They are experts in their own particular circumstances and life. We have had to get to know ourselves intimately, physically, emotionally, mentally, intellectually and spiritually.
We are all unique in our battles and our fights, and we can empathize with so many fellow fighters, but we all have to fight our own battles in our own individual ways. That’s just the reality of it.
My husband and I have developed a set of rules and guidelines when something happens. If something becomes too painful, lasts for too long or there are visible signs of damage or broken skin, we must endeavour to get help. In the meantime we take my temperature, monitor my blood pressure and so on and see if my own body still has the capacity to fight back still.
When you are chronically ill and Autoimmune, some of the hardest things in the world to know is when we are also sick. It’s like looking for a pebble at the bottom of deep and murky waters.
Some of the most difficult things are often the things that everyday people take for granted; Even the doctors.
Sometimes I have not wanted to be any sicker that I have denied feeling worse. I didn’t want ‘another’ thing to happen or to worry further, so I try a little bit of denial. After all, we are the kings and queens of struggling along and putting on a face for the world. So many times it’s easier to pretend to be better than to admit we are worse.
When I go through these times I always draw the ones I love closely to me and remind myself that they are the real reasons that I continue to fight whatever my body is doing and whatever infection, germ or bug is inside me until I can give them something more and someone stronger.
Until then we must ride yet another storm and hope that it passes soon… This is the warrior way. This is what the Chronic fighter does.