Thursday, February 29, 2024

Such a Pain

I was scrolling through Twitter (I have a hard time calling it X) when I came across a tweet by @itsjustdovglad that described what it was like to have a chronic illness. He had fibromyalgia, which is a chronic illness that my mother also had, but as you know if you regularly read this blog, I have chronic migraines. It’s often hard to describe what it’s like to be in constant and never ending pain, but the description below sums it up pretty well:


Chronic Illness - What you should know


Inside every chronically ill person is a healthy person wondering what on earth happened to them.

We struggle to do the very simplest daily tasks and feel guilty that most of what needs doing won't even get started.

We are not faking it or being lazy; often we make ourselves worse by trying to hide our illness and carry on with life pretending we are healthy.

Just because we did something yesterday doesn't mean that we'll be able to manage it today.

The likelihood is, we pushed ourselves more than we should have and it will take us days, maybe weeks, to recover.

The question "How are you feeling?" is the most difficult question for us as we can't remember what it feels to be 'normal' and not in pain.

It hurts more than you can imagine to have to say no to the things we want to do but can't manage because of our illness.

We do things at pain levels others wouldn't even consider moving at because if we don't we won't have a life.


I’ve never come across a more accurate description of what it’s like. This describes my chronic migraines so well. People with  chronic illnesses may be in constant pain, but we go on with life because we have to or else it wouldn’t be worth living if we only focused on the pain and let it beat us.


Currently, I feel very fortunate that my current treatments (Qulipta and Botox along with other medications for my trigeminal neuralgia) are working to reduce my migraines and the pain associated with it, but I know all too well how that can change at any time. For now though, I am very thankful that I have days without migraines. I have some days when the migraines are sudden, sharp, and severe, but also brief, lasting only a few minutes at a time. I still have migraine days, when I wake up with a migraine and go to sleep at night with the same migraine that has been with me all day. Some days, though migraines can last several days in a row before there is some relief. 


It can be difficult to keep on keeping on, but I am thankful that I now have more days without pain than with pain. Before this last Botox treatment, I had migraines 30 out of 30 days a month. Now, that has reduced to about 10 out of 30 days. For me, that’s a significant improvement.

4 comments:

RB said...

Did you consider psychotherapy for the migraines?

Joe said...

RB, I have not. I have tried therapy in the past for my depression, and both times were not helpful. One of the therapists actually made it worse. So, while I know therapy can be a great thing, I tend to be hesitant about it.

uvdp said...

I think you are very courageous, Joe, to be able to bear this migraine.
Fortunately, you have less, and we can hope that with God's help and scientific discoveries, it will continue to improve.

Anonymous said...

Entre otras dolencias sufro de fibromialgia y a veces sufro brotes que me dejan tumbado en la cama aunque la recomendacion es moverse y no quedarse inmovil, pero le dolor es TAN molesto e incapacitante que el simple hecho de intentar incorporarte es todo un trabajo extenuante como si descargaras un camion.
Las noches estan llenas de despertares y de dolores de espalda y extremidades. Hoy me duelen especialmente los hombros y los brazos y el dolor se irradia brazos abajo hasta llegar a los dedos de mis manos.
Es duro, pero hay que hacer un esfuerzo y asumir que este dolor nos va a acompañar siempre, por lo que lo mejor es asumir que es un dolor de compañía y que no podemos permitir que estos dolores nos invaliden.

Ángel