My last blog post was about, “10 things nobody tells you about Endometriosis.” I decided that this blog post will be a bit similar.
In result, I will give 12 things that I want others to know about how I live through Chronic Illnesses.
I am hoping this will be informative for those who don’t have to deal with any sorts of pain and are able to lead a normal life. I am also hoping this will help those who deal with Chronic Pain realize they are not alone.
1. When you have a chronic illness. There is a chance that you have more than one and that they are all tied together. Take a look the list of the Chronic Illness’s I have below.
- Fibromyalgia: syndrome affects the muscles and soft tissue.
- Endometriosis: is an often painful disorder in which tissue that normally lines the inside of your uterus
- Ankylosing Spondylitis: a type of arthritis that affects the spine. Ankylosing spondylitis symptoms include pain and stiffness from the neck down to the lower back. The spine’s bones (vertebrae) fuse together, resulting in a rigid spine.
- Osteoarthritis: “wear and tear” arthritis.
- Interstitial Cystitis (IC): It is a feeling of pain and pressure in the bladder area. Along with this pain are lower urinary tract symptoms which have lasted for more than 6 weeks, without having an infection or other clear causes.
- Adrenal Fatigue: said to be caused by high levels of chronic stress that lead to a taxing of the adrenal glands, forcing them to overproduce or under-produce cortisol, the stress hormone, at the wrong times.
2. I wear clothes that are sometimes one or two sizes too big for me. And I wear a lot of layers. The reason behind this is due to Fibromyalgia my skin can be super sensitive and just the slightest touch to my body can cause the most intense pain there is. If I end up having to go out somewhere where I have to dress nice. I always bring a spare change of clothes and change directly when I get in the car.
3. I try to avoid places where I have to walk endlessly or go up flights of stairs. While I used to succeed with the stair-master at the gym (years ago). Going up one flight can take a good 5-10 minutes. This is a mixture between Ankylosing Spondylitis, Osteoarthritis and Fibromyalgia. The pain starts from my sacroiliac joint and radiates throughout my body. Depending how steep the stair case is and how much pain I am in, it will usually trigger a fibro flare as well. Therefore, most of the time if it is available I use the escalator or elevator.
4. There are some days I don’t want to deal with anyone or anything. This is usually due to a high-pain day and flare-up day. This day requires no social media, a bed, pillow, lots of ice packs and heating pad. Mostly Arthritis flares or Endometriosis will be the cause of it.
5. My brain sometimes might be smaller than a popcorn kernel. I will forget almost everything. Especially when it is told to me minutes before. It especially shows doing choreography on the ice. While everyone has theirs perfected by the second competition. I am interpreting it every time. This is related to Fibromyalgia and it’s a symptom called “Fibrofog.”
6. Adrenal Fatigue comes when I am the most stressed out. Usually the adrenaline will last through the stressing part but my body will completely crash when it’s over and I can sometimes be out for several days. This will end up mixing into Fibro. If I am out too long the flare will start.
7. I never like missing anything. But with the Chronic Pain and Exhaustion I have been missing more and more over the years. I’ve missed 1-2 classes per course in a semester. I have missed a training every odd week. I don’t do this because I am lazy. I do this because I am starting to know my limits and I know when my body will shut itself off.
8. Sleep has been my best friend. Just not always at the most appropriate times. Some days I can get a full straight 8-10 hours and have a normal day. Other days I can have the same amount of sleep but nap 3x in a day. Other days I can suffer through several days of insomnia. It is never consistent and I never know what my body will get. But I have to adjust every time so I don’t flare everything else.
9. Usually within the first hour of being awake, I will be able to tell what type of day I am about to have. However, what people don’t understand and what I want them to understand is, it can change at any time during the day. As well, just because I was perfectly fine the day before does not mean I am magically cured. Everyone is entitled to their good and bad days.
10. My mood swings somedays are very unbearable. I don’t mean to take it out on anyone and those who are close know when to stand away and when to come closer. Usually it is triggered by lack of sleep in a mixture of severe pain. There have been times I had to dose myself regularly with hormone controlling pills but I have been finding alternatives.
11. I hate taking medication. I really do. I have tried several types for all the chronic issues. While they relieve some symptoms I realized I have a low tolerance and get slight reactions. My worst one was Humira for Ankylosing Spondylitis. One box cost about 1400$- and I would need to purchase a box every month. And this had to be monitored at the clinic while my best friend injected me. The first day was fine and the second day until the meds eventually relieved themselves I was having every symptom in the book. After that, I have decided to go as natural as I can. As well, I have over a dozen of pain medication and when to take it if needed. It ranges from Tylonel/Advil to Oxycodene, to morphine.
12. The emotional symptoms of Chronic Pain are more severe than the physical. I can deal with the pain. But I cannot deal with the fact I might lose someone close to me or feel like I am a burden. I am even more hard on myself when my body does not allow me to follow through on my plans. Whatever the case, those who I have around me have been there for the longest time. It is a process of cleaning out the friend pool of those who become a burden.
These are some facts I want people to know about my daily pain struggle and most of the others who suffer.
Every story is different but in the end we all want the same thing. Love and Understanding from those who don’t feel what it is we feel.