I have been diagnosed with many illnesses over the years but some have just made my body break down.
I have one that causes so many secondary conditions and complications.
EHLERS DANLOS SYNDROME :
A connect tissue disorder caused by the body producing faulty collagen. Collagen makes around 30% of the proteins in the body and is also in every single body part. It affects every single organ, eyes, ligaments, tendons, surrounding tissue, skin…. The list goes on.
This condition alone causes many issue and causes people to suffer every day with chronic and server pain, chronic fatigue, dislocations, subluxtions, bleeds, tears and normal day function. For me this condition has server affected my mobility where I am now In a wheelchair most of the time because I’m to weak, fatigued and to much pain to walk.
This condition had caused many of my other conditions including:
Gastroparesis is the paralysis of the stomach. It means the stomach doesn’t contract properly to be able to digest food. Some people are able to be on specific diets that are able to be digested easily. Some are on full liquid diets and some of the more server cases need to be enteral feed by NJ or GJ tubes. These are tubes that bypass the stomach straight into the small bowel. This means they are fed directly into there small intestines and nothing goes through the stomach. I currently have an NJ tube and am completely tube dependant as even just my stomach bile in my stomach makes me sick.
This illness is one of the toughest. It also causes chronic pain, bloating, nausea, vomiting, cramps, malnutrition, dehydration….
Also known as postural orthostatic tachycardia syndrome.
This is a illness caused by a disfunction of the automic nervous system. It causes your heart rate to increase very high and your blood pressure to drop very quickly with position changes. This can be simply from standing up of the sofa.
This also caused many symptoms fainting, dizziness, nausea, pain, pounding heart rate, chest pain, breathlessness, headaches….
Inappropriate sinus tachycardia syndrome
This is when the heart beats abnormally fast. This causes similar symptoms to POTS. My heart rate adveraged between 140-180bmp naturally. It’s ment to be 60-80bpm. My heart even managed to reach 246bpm while resting. This can be quite dangerous as the heart can not always regain control itself. I have medication for this but my heart is normally still over 110bpm. This is all caused by a default in the Sinus of the heart.
Complex regional pain syndrome.
This is an extremely painful condition. It’s even listed above child birth and amputation of a digit (fingers and toes). This is caused by a disruption in the central nervous system . It can be caused by Injurys as little as a stubbed toes to broken bones and also can be caused by virus’s and infections. People have actually had to get limbs amputated by this condition and some have become bedbound.
Everyday this condition causes: extreme pain, fatigue, swelling, colour change of the area affected, pressure, extremely sensitive, blisters, ulcers, burning, stabbing and sharp pains, spasms, restricted to fabrics touching it, extremely hot / cold…. The list goes on.
These migraines can look like you’ve had a stroke. They can cause paralysis, vision changes (I’ve lost my sight in my right eye from them), speach issues, facial paralysis, hearing issues, spasms, ptosis, neuropathy, pain , pressure …so on. I suffer from these every 8ish weeks. For me they completely disable me. They cause server pain on the right side of my head and face. The right side of my face becomes paralysed with an obvious facial droop like a stroke. This has also caused me to go blind in my right eye. It also causes the full right side to become paralysed I can’t even move a finger or toe the tinniest bit. My speech goes and people find it very hard to know what I’m saying as it starts off as a stutter but then becomes so bad I can’t form words. I get major swelling of my face and it also bruises. The longest episode I’ve had has been 7 weeks + as I’m still recovering now. The pain in my head and face normally lasts around a week and then starts settling down. Paralasys can last weeks and this time I had to completely relearn how to walk which I’m still currently doing.
One of my newest diagnosis’s. This is basically where your brain miss communicates with your body. This affects me by giving me seizures, Tics, prolonged paralysis. This is triggered by uncontrolled pain for me.
I’ve also had many infections including sepsis due to these conditions weakening my immune system.
As you can see basically it’s a life full of pain fatigue hospital visits and stays. No independence, loss of friendships, pretty much not doing anything and just constantly feeling poorly but you have to smile and stay positive.