An analogy to help explain our condition to children and normals!

[WendyWoo50]

I wrote this as a reply to a post where someone was asking why we are always tired. I thought it may help others so have posted here for all to see:

Why are we so fatigued?

I think it is because with APS being an autoimmune condition this is happening in the body as I understand it (my analogy)

When you have a flu bug, your soldiers (white blood cells) spring into action and set to work battling, fighting the nasty bug. The constant fighting makes you (the host) feel exhausted and all you want to do is lie in bed. When the bugs are all killed the fight is over; the soldiers return to base, relax (go on leave) and you start to feel better. You are less tired and get on with you life again.

Now sometimes when the bugs are all killed, the soldiers remain on red alert and search around for another invasion.

They then misguidedly see a specific healthy group of cells and see them as invading organisms (bugs) and they start a new battle. They start fighting when there is no need. In the case of APS the soldiers fight the antibodies in our blood. In the case of Sjogrens Syndrome; The soldiers fight the moisture producing cells of the body. Other conditions mean the soldiers are fighting other battles (other cells).

As the fight gets underway, again you (the host) become exhausted and want to lie in bed. You can also display flu like symptoms.

So with autoimmune conditions you feel exhausted because there is a battle going on and the response is to sleep in order to let the battle continue in the hope when it’s over you will be better. Unfortunately this does not happen for the autoimmunes, the battle goes on and on.

The medicals only defence is to give us immunosuppressive drugs, in the hope that they take a message to the soldiers (white blood cells). They hope that the drugs can persuade the soldiers that the battle is over, the bug has gone and they can rest again. If the message is delivered to the soldiers then the fighting subsides and you start to feel better.

The reason that we have to be careful not to catch bugs is that our soldiers are being told by the drugs - all is well, there is no bug, no fighting is required.

Many of us will have to stop taking the drugs if we become ill (only with specialists guidance) to alert the soldiers of the invasion.

I hope my analogy makes it easier to understand what is happening inside us and why we are often so exhausted.

Personally I think that resting properly helps. Listen to your body but - there is a fine line between giving up and resting when required.

[lupus-support1 Administrator]

👍

[leakeadea]

What a great analogy, I've never really thought of it that way, so I think you've just educated me too! 👍

Re APS, another reason we can feel tired and completely rubbish, is because when our blood is too thick and/or producing micro clots, the blood cannot get into our micro blood vessels and therefore cannot pass oxygen to our organs, or into our cells. Since every single cell in our body requires oxygen to function, its no wonder we are exhausted and unable to function.

It was an APS nurse who explained this to me because I couldn't work out why I was still so breathless and utterly exhausted, despite using my ambulatory oxygen. She told me that even though my blood was well perfused with oxygen, it was the blood itself that was too sticky to get into the micro blood vessels, where oxygen transfer takes place. My INR was low at the time.

Its shocking really, what our poor bodies have to put up with! 😯

[MrsMouseSJ in reply to leakeadea]

I think I might be telling this very helpful info to the nurses who do my INR and who wonder as to why I have such bad, unrelenting fatigue! I do find a higher INR makes a big difference - but I think they remain unconvinced. Now I explain why!

[leakeadea in reply to MrsMouseSJ]

I'm also much better when my INR is above 4.0.

We shouldn't have to fight so hard, to get a bit of empathy and a little understanding 🙄

[WendyWoo50 in reply to leakeadea]

Me too

[HollyHeski Administrator]

Great wording - thank you x

[Kerlampert]

Great story! Thanks!