Friday “Final Thoughts”

I am going to make this one legit brief. I wanted to talk about fibromyalgia with the “F” alliteration – this is something that is very close to me as I have been diagnosed with it, my sister has been diagnosed with it, and my mother who has also been diagnosed with it suffers greatly from it. I’m going to hold off on that discussion right now and just get to a point I think is crucial when we delve into any discussion of “chronic illness” or “disability” or “chronic disease.”

There are, no doubt, “levels” of severity. For me, I do not “notice” the fibromyalgia frequently – perhaps it is the fact that I have such severe “autoinflammatory” problems and very literally all of the joints in my body have degenerated since I was about 22. I have developed degenerative scoliosis. My bones are so “weak” and “soft” from the 16 years of steroids that x-rays no longer capture accurate images of my bones. Along with all of the other severe pains that go along with my illnesses, I am more or less always in SOME level of pain. HOWEVER, there is no way for me to genuinely compare the pain I am going through with the pain someone else is going through – I can only convey my thoughts and knowledge regarding certain medications and share my experiences with chronic pain and chronic illness. I have moderate-severe Behcet’s and seronegative RA and severe “enough” CVID to make common infections life-threatening. I do not, however, have severe fibromyalgia – at least not to my knowledge.

I am going off on a tangent again! All I really want to get across here is that we NEED to find a way in which to express our illnesses so that others (those who suffer with the same illnesses or other illnesses to varying degrees as well as “normal, healthy” people) can have a better understanding of exactly what we are going through. I thought of this example with fibromyalgia and ran it by my mother and we have both found it to be largely true. I am sure most of you experienced mono sometime in your “youth.” I don’t know how many of you have had RECURRENCES of mono (EBV) like I have (thanks largely to the almost 10 years I was on basically chemotherapy) in which I would find myself just too fatigued and ill to even get out of bed or do anything for months at a time, often during the fall and winter. But if you are one of the people who have had mono, you know what it is like to feel completely drained and that your body has lost its life force. You know the random aches and pains and headaches and body aches and general misery that comes with fighting this illness. To me, fibromyalgia is a lot like that – perhaps more like the more “severe” EBV recurrences – except with added components of extreme brain fog, pains that feel like you’re hitting your funny bone except they are all over either parts of your body or your whole body. It feels like if you could just rip your skin off and rub whatever is beneath it, the pain MIGHT go away. Nothing really helps. I know I become acutely aware of my fibromyalgia when the weather changes drastically like it does at this time of the year in the northeastern USA. And the fatigue – it really is very much like mono – except there is no definitive “end point” in sight. Although it might not be known to be life-threatening now, it is far from a “pansy” illness – and, again, I can say that still being able to feel that “fibromyalgia” acting up even when you can see swelling in my BONES as well as in my joints. The GI tract and entire CNS are also often involved.

I guess I got a little bit more into that than I wanted … but I just think if we could somehow find a way to characterize our illnesses in this sort of way – in terms that are more or less “universal” and understood by most people, we would be so much better off not only in terms of getting accurate diagnoses and prompt treatment (the KEY to beating Behcet’s is hitting the “Syndrome” HARD and FAST) but in terms of awareness which, in turn, brings about more research and better treatments. If someone said he or she has fibromyalgia and it was widely known that that feels very much like something like mono with a bad flu and no sleep piled together, I think we could get so much further with all of those things I mentioned above. And if we could figure out how to do that with these more complicated and notably potentially fatal diseases, we’d be making our own “giant leap for ‘man’kind.”

I hope that gives you something to think about – if you can put whatever affliction you might face (or afflictions) into terms that an “average” person might be able to understand. Just the UNDERSTANDING is huge. I have a friend I met at a gas station – she saw me frequently and knew I have many severe health problems. She disappeared for a little while and when she finally came back and I was able to talk with her she told me the arthritis in her knee was so bad that the fluid accumulation caused pressure behind her knee, causing severe phlebitis and Baker’s cysts. I told her I had experienced the exact same thing, almost like clockwork every other year. You could tell there was almost a sense of relief in her eyes that someone else KNEW that awful pain; she told me outright that she had given birth to several children and had to have a C-section … and ALL OF THAT COMBINED paled in comparison to the pain just in her knee area.

So please try to think of ways to do this for your illness or perhaps others you have experience with. I hope that is helpful advice for all of you – I genuinely believe that if we can talk in terms that just about everyone understands, we will ALL benefit.

Thanks much for taking the time to read this and I hope you are having a happy and healthy day wherever you are in the world. My heart is ALWAYS with YOU!!!

❤ Always, Beth