Living with chronic illness if very difficult. I haven’t had the energy to do much of anything lately and my fatigue is getting worse along with most of my symptoms. I thought it was time to write about what it’s like to live with chronic illness.
Major Health Issues
- Chronic Mollaret’s Meningitis
- Traumatic Brain Injury (TBI)
- Functional Neurological Disorder (FND)
- PostTraumatic Stress Disorder (PTSD)
- Hiatal Hernia
- Neck stiffness / pain
- light sensitivity
- temporary paralysis
- acute pain all over body
- random numbness in extremities
- Attention issues
- word finding problems
- memory issues
- Unable to regulate temperature
- aching pain in joints
- uncontrollable muscle movements
- loose joints
- bowel regulation issues
- Worn out from everyday activities
- Ringing in the ears
- Pain and numbness in arms after sneezing
- Sleep problems
- Facial spasms
- Vision problems
- Problems swallowing
- Health anxiety
- Post-concussion syndrome
Anyone reading this with a chronic health condition will probably be very familiar with most of these symptoms. They make it so that employment just isn’t an option. If you look at people who have any one of these diagnosis, you will see how difficult it can be.
Information Regarding Health Conditions
- From the National Institutes of Health regarding Mollaret’s Meningitis:
“Mollaret meningitis is a rare type of viral meningitis that is characterized by repeated episodes of fever, stiff neck (meningismus), muscle aches, and severe headaches separated by weeks or months of no symptoms. About half of affected individuals may also experience long-term abnormalities of the nervous system that come and go, such as seizures, double vision, abnormal reflexes, some paralysis of a cranial nerve(paresis), hallucinations, or coma. Mollaret meningitis is poorly understood and the exact cause remains unknown. However, recent data suggests that herpes simplex virus (HSV-2 and, less frequently, HSV-1) may cause some, if not most cases. Other causes may include trauma and viral infections other than herpes simplex. There is no specific treatment, so management involves supportive measures such as rest, fluids, and medicine to relieve the fever or headache.“
Now imagine it isn’t just every once in a while, but all the time. There is information in the current documentation from UpToDate.com regarding chronic meningitis stating Mollaret’s Meningitis can look like chronic meningitis.
- From the National Institutes of Health regarding Traumatic Brain Injury:
“Traumatic brain injury (TBI), a form of acquired brain injury, occurs when a sudden trauma causes damage to the brain. TBI can result when the head suddenly and violently hits an object, or when an object pierces the skull and enters brain tissue. Every TBI is different, and symptoms of a TBI can be mild, moderate, or severe, depending on the extent of the damage to the brain. A person with a mild TBI may remain conscious or may experience a loss of consciousness for a few seconds or minutes. Other symptoms of mild TBI include headache, confusion, lightheadedness, dizziness, blurred vision or tired eyes, ringing in the ears, bad taste in the mouth, fatigue or lethargy, a change in sleep patterns, behavioral or mood changes, and trouble with memory, concentration, attention, or thinking. A person with a moderate or severe TBI may show these same symptoms, but may also have a headache that gets worse or does not go away, repeated vomiting or nausea, convulsions or seizures, an inability to awaken from sleep, dilation of one or both pupils of the eyes, slurred speech, weakness or numbness in the extremities, loss of coordination, and increased confusion, restlessness, or agitation.”
- From the National Institutes of Health regarding Psychogenic Non-Epileptic Seizures:
“Psychogenic seizures are not caused by abnormal brain electrical activity. The symptoms of psychogenic seizures usually reflect a psychological conflict or a psychiatric disorder. However, psychogenic seizures are not “purposely” produced by the patient, and the patient is not aware that the seizures are non-epileptic, so the patient may become very anxious over having these symptoms. The presentation of the differential diagnosis should be done early in the course of treatment for better patient acceptance, and treatment options should be presented early in the evaluation period.”
I have been diagnosed with this condition, however I believe there is a strong possibility that my seizures are actually due to the chronic meningitis. This is supported in the literature from the National Institutes of Health regarding seizures stating Meningitis can cause seizures. The problem is that there is no testing to prove or disprove this theory, therefore since there was no abnormal activity on my EEG, it must be PNES.
- From the National Institutes of Health regarding Functional Neurological Disorder:
“… is a condition in which a person has blindness, paralysis, or other nervous system symptoms that cannot be explained by a physical illness or injury. Symptoms may occur because of emotional distress or psychological conflict. They usually begin suddenly after a stressful experience or traumatic event. People are more at risk for a conversion disorder if they also have a medical illness, dissociative disorder, or personality disorder. Psychotherapy and stress management training may help reduce symptoms. The affected body part or physical function will need physical or occupational therapy until the symptoms disappear.“
- From the National Institutes of Health regarding PostTraumatic Stress Disorder:
“PTSD is a disorder that develops in some people who have experienced a shocking, scary, or dangerous event.
It is natural to feel afraid during and after a traumatic situation. Fear triggers many split-second changes in the body to help defend against danger or to avoid it. This “fight-or-flight” response is a typical reaction meant to protect a person from harm. Nearly everyone will experience a range of reactions after trauma, yet most people recover from initial symptoms naturally. Those who continue to experience problems may be diagnosed with PTSD. People who have PTSD may feel stressed or frightened even when they are not in danger.”
- From the National Institutes of Health regarding Depression:
“Depression (major depressive disorder or clinical depression) is a common but serious mood disorder. It causes severe symptoms that affect how you feel, think, and handle daily activities, such as sleeping, eating, or working. To be diagnosed with depression, the symptoms must be present for at least two weeks.”
- From the National Institutes of Health regarding Anxiety:
“Occasional anxiety is a normal part of life. You might feel anxious when faced with a problem at work, before taking a test, or making an important decision. But anxiety disorders involve more than temporary worry or fear. For a person with an anxiety disorder, the anxiety does not go away and can get worse over time. The feelings can interfere with daily activities such as job performance, school work, and relationships. There are several different types of anxiety disorders. Examples include generalized anxiety disorder, panic disorder, and social anxiety disorder.”
- From the National Institutes of Health regarding Hiatal Hernia:
“A hiatal hernia is a condition in which the upper part of the stomach bulges through an opening in the diaphragm. The diaphragm is the muscle wall that separates the stomach from the chest. The diaphragm helps keep acid from coming up into the esophagus. When you have a hiatal hernia, it’s easier for the acid to come up. The leaking of acid from the stomach into the esophagus is called gastroesophageal reflux disease (GERD).”
So, as you can see above, that is a lot of issues to deal with. For a lot of them, having just one is trouble enough. Having all of them makes life that much more difficult to navigate. Many of them are diseases that don’t have much research and/or don’t have any treatments or cures. From day-to-day I don’t know if it will be good or bad. Some days I feel good and try to do some chores around the house and end up unable to do anything else for days because I am completely wiped out. I have to deal with major flare ups of my meningitis, and other symptoms, every time I have any kind of injury or procedure like teeth cleaning, teeth repair, or cyst removal.
Having all of these issues allowed me to be approved for disability on reconsideration, although long-term disability insurance, that I received as a benefit of employment with my last employer, continues to deny me and tell me that I am not disabled. Even if I was lucky enough to begin working again, there is no employer out there that would put up with more than two weeks out of work a year for any one illness. At this point I am down for months trying to recover from a meningitis flare up, so there is no way I could ever find work.
When I do things like this to list out all of medical problems, it helps me confirm how serious my illnesses are and my inability to work in my mind. People with chronic illnesses don’t want to be that way. We want to be able to go out and do things, take care of chores around the house, without feeling exhausted afterwards. The best thing you can do for someone with a chronic illness is tell them you believe them. I can’t tell you how many times doctors have minimized and/or dismissed my symptoms and made me feel like crap. Please be kind and patient with those of us with chronic illnesses.
If you have the means to support any of these organizations, helping to support people with these illnesses, please do. It really will help those of us dealing with these horrible diseases.
- www.MeningitisNow.org – Meningitis Now is a leading organization funding research into meningitis based in the UK.
- www.GlobalGenes.org – Global Genes is an advocacy organization helping those with rare diseases based in the US.
- www.RareDiseases.org – National Organization for Rare Diseases is an another advocacy group for rare diseases based in the US.
- www.biausa.org – Brain Injury Association of America is a leading organization fighting for people with TBI in the US.
- www.loveyourbrain.com – Love Your Brain was started by former snowboarder Kevin Pearce to help those with TBI.
- www.FNDHope.org – FND Hope is a leading organization fighting for more research and outreach to doctors about this misunderstood disease, including PNES, based in the US.
- www.PTSDUSA.org – PTSD Foundation of America is an organization helping those with PTSD based in the US.
- www.HopeforDepression.org – Hope for Depression Research Foundation is working to help those with depression based in the US.
As always, remember to be kind. And if you are living with a chronic illness, please share your story in the comments.
Life’s Hard; Be Kind