Spoonie Story: Gina

spoonie story Gina

My name is Gina and I am 23 years old. I am living with chronic pain since over 12 years.

spoonie story Gina

I was undiagnosed for a very long time. When I was a child no one took my pain very seriously. Adults kept saying that I am “just sensitive” and I just have to be more careful with myself. I have lived with strong pain attacks, never took medication that helped me and also had no person who really tried to help.

Over the years my battle got worse, got better and then got worse again. I’ve learned how living in the pain hell and the depression after feels like at a very young age. Some years later I finally was diagnosed with Temporomandibular Disorders/temporo-mandibular-Joint-Disease. Sadly it’s not easy to cure.

My symptoms are changing every now and then but for most of the time they are like this: A lot of my symptoms you can compare with migraine. Everything around my head is hurting extremely and my inner ears are always the most painful part. By everything I mean that my nose, my eyes any my jaw are all in a specific pain. There is pressure in and around my eye and it feels like someone is pushing his fingers into it.

I am also photosensitive and having spasmodic convulsions (which is new and I wonder if people think that I would blink at them). My shoulders, arms and legs often feel very weighty and I am moving like a 82 year-old. The symptoms are often only at one half of my body. This means that my right side is completely in pain and my left side is completely not. This is really strange but also allows me to handle my daily life at least half as good as I should. Sometimes the pain suddenly is there like a pain attack and at other times the pain is getting worse over the day or night.

I’ve heard of the spoon theory only a few days ago and I totally identify with it. It has been a long way to accept I have a chronically illness. I always thought I have to live my life like every healthy person so I’ve pushed myself very hard. If you are living with chronic pain you learn to use the good days, but you also need them to rest from the bad day before. It’s very hard to live with so few spoons.

But I also think that this illness makes me a better person in some ways. I think I know what is important in life and what is not. I appreciate the little things in life. On my good days I can still love the sun, even if it’s hurting me on other days. I think people with invisible illnesses, who are fighting every day are totally badass.