6 Things You Should Know About My Life as a Spoonie
Life with an invisible illness to anyone that doesn’t live with one is impossible to fully understand.
How can people who have an ordinary, well-functioning immune system possibly understand what life is like? The answer – they can’t.
I have created a list of daily issues that people with chronic illness go through to try to explain to people without our illnesses what life is like:
1. I am constantly in pain.
This is not the same pain that “non spoonies” have. It is an agonizing pain, that prevents me from socializing or going to work. I might not be able to stand up or sit down for long periods. I struggle to understand the pain myself sometimes. My pain normally starts in the tops of my legs, and depending on various factors, it can spread down in my lower legs, or into my back. On a really bad day, it will spread everywhere.
I can’t really describe the pain I get. Sometimes it feels like I have bugs crawling in my legs, other times it is a constant ache and sometimes it is a burning pain. I have been backwards and forwards with various aches and pains throughout my life to the hospital and doctors.
Some times the pain has meant I have been on crutches or had to use walking aids to help me. I also had to have three weeks off work recently for an unexplained pain in my foot. I have in the last month, I have been diagnosed with fibromyalgia. Although this is not good news for me, in a way it feels good knowing that my pain is not “all in my head” and I am not imagining it.
2. I bruise really easily.
This isn’t great for someone like me who is very accident prone. I am constantly falling over, or banging into stationary objects. Doors and my feet are two of my favorite trip hazards. This means when a new bruise comes I am used to it, but I am constantly being asked, “Oh, have you seen that bruise there?” Yes, thanks for asking, I have.
3. My tiredness is not laziness.
The big problem for “spoonies,” is the constant tiredness. It is not laziness! Despite what people who think we can control our weight, by eating less and moving more, will tell you.
For me, it is a debilitating fatigue, caused by adrenal issues, or gut problems causing malabsorption. In fact, it is not even fair to describe it as tiredness.
It is an exhaustion that prevents us from going out and doing what we want to do, let alone what others want to do.
I have lost friends because of my fatigue. Sometimes on a bad day I can go to bed at 9 p.m. and not wake until 3:30 p.m., and even then I still only feel like I have had 30 minutes restless sleep.
I want to go out and be with my partner, my family and friends, but most of the time it takes all my energy just to get off the sofa or out of bed.
4. Frequent, non-frequent or painful toilet trips.
As someone who has been diagnosed with irritable bowel syndrome since I was a teenager, and most recently diagnosed as a celiac, toilet trips are a problem for me. Sometimes it can take me ages, other times not so much.
This is very embarrassing, especially in situations where I am not in the comfort of my own home.
I remember a time when I was about 18 or 19 years old. I had gone out to a nightclub with friends. I was having a great time, when all of a sudden that familiar feeling in my stomach reared its ugly head. The cramping and pain. I needed to go but the queue for the girls bathroom was absolutely chocka.
“What do I do?” I kept thinking to myself. I stood in the queue and just prayed silently in my head for the queue to go down quickly. Fortunately it did, and I got in the cubicle and did my “business.” However, there were at least 15 girls still in the bathroom checking their hair and makeup. I had been in the cubicle quite a while, and was in pain. Then, one girl banged and kicked my cubicle door, and very loudly and said, “WTF you doing in there, have you died?” and laughed. I said nothing. I didn’t want anyone to know it was me in there, so I lifted my feet off the floor and balanced them on the door, so that if anyone looked under the door they would think the door had just locked from the inside and no one was actually in there.
I was absolutely mortified because I knew that I was still going to be a while. If they had wanted to, the girls could have gone in to the neighboring cubicles and peered over in to mine.
I kept still, and didn’t make a sound. I was so concerned that someone might hear me breathe and then they would know I was in there. I wanted to fall down the toilet and vanish. Eventually the girls did leave, and I came out, in floods of tears because of the embarrassment. I didn’t even go back to find my friends. I walked straight out of the club and went home alone. My night had been spoiled. I promised myself I would never let that happen again.
5. Frequent, inconvenient and most of the time, pointless hospital or doctors visits.
This is a huge bug bear of mine. I can not choose when we are sick. When I am going to catch a cold, or a general bug, that completely shuts my immune systems down and makes me really ill. I understand that this is really inconvenient for my employer, but I can not help it.
I will have time off work.
I wish I could schedule myself around “normal life,” but it does not work like that. Sometimes it happens when I am out having fun and we have to go home, or go to hospital. I can only apologize.
I know, hand on heart, how annoying it can be for some. However, think how bad I feel being the person that keeps going to hospital appointments and being told:
“Just take some antibiotics and go home.”
“Keep your fluids up.”
I am the patient, and I know when I do not feel right.
Many of us spoonies lost faith in the medical profession a long time. Of all the spoonies I have spoken to, it has taken them ages to get a diagnosis at all, and even when we are being monitored, and have researched what our optimum blood levels should be, the doctors still tell many of us that we are fine.
My hyperthyroidism was discovered purely by accident. I had been told from a young age that I had a virus in my blood but I was going to have to learn to live with it.
Then I was told I was borderline low thyroid. When I moved doctors, the nurse at a routine exam checked my pulse and asked, “Have you run here?”I laughed. I had driven and had been sat in the waiting room for 20 minutes. She repeated the test and my pulse rate went up. They referred me for a blood test and called me into the doctor the same day. I had hyperthyroidism and Graves’ disease, and my levels were sky high. Had it not found when it was, it could have killed me.
Maybe if the medical profession had monitored me more closely when I was younger, I would not have ended up as ill as I was.
I was also diagnosed with irritable bowel syndrome from about 15 years old. I was given muscle relaxants for the pain and constipation, and told that nothing else could be done.
Hang on a minute, though. This month, I have just been diagnosed with celiac disease. Again, this is sounding like a familiar story. Maybe if the medical profession once again had monitored by stomachaches, and multiple trips to the hospital in agonizing pain, I would have been diagnosed with celiac sooner and not spent most of my life with terrible stomach pain.
If my celiac had been diagnosed sooner, it may have prevented my thyroid from malfunctioning in the first place, and I might not have had to have had it removed, as there is a strong link between thyroid and gastrointestinal problems.
It might also have meant that my gallbladder might not have started producing gallstones, if my gut was working properly and I was not eating gluten. I might not have needed to have my gallbladder removed. I am due to have a gut biopsy soon, so hopefully there has been no lasting damage caused by celiac not being found sooner.
6. We spoonies are still human beings, and the people that you knew before we got sick.
Do not forget us.
Keep asking us out. We may not come, but still keep asking. One day we might!
If you do not understand something, ask us! Sometimes we do not know how to explain it very well ourselves, but we will try.
We are still the people, the family, the daughters, sons, friends and partners that you love. We just have an underlying problem that we can’t get rid of.
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