Category Archives: Chronic Fatigue Syndrome

The Big 4-0: aka, My Aging Chronic Illnesses

This past Monday I turned 40 years old. Four decades. Two scores. I am not the type of person who freaks out over getting older. We are all getting older every second of every day. It is no big deal. However, this birthday is slightly different. You see, my fall through the rabbit hole of chronic illnesses and disability all began right around my 30th birthday. I literally see my thirties superimposed by my poor health. It started with a migraine that lasted two weeks and quickly spiraled out of control with shingles, fibromyalgia, raynaud’s disease, osteoarthritis, degenerative disc disease, chronic fatigue, acid reflux… And I am sure the Fates are not done dumping on me yet.

However, I view my forties with hope. A hope that things will get better for me and my health. I am hoping that the mere changing of my decade from a 3 to a 4 will magically change everything. I guess it is no secret what I wished for when I blew out my birthday cake candles. What would you wish for if your life was ruled by chronic pain?

I can honestly say that I did not picture myself in my current predicament ten years ago. Back then, I thought I could simply make an appointment with my doctor and everything would be fixed. Then I could move on with my plans for my career and having another child. Needless to say, neither of those things happened. I lost my career and the chance to give my son a sibling. He seems okay with it, but I still have moments when an overwhelming sense of loss over what could have been washes over me. I know my body cannot physically care for the needs of a newborn. I have babysat friends’ kids and been completely overwhelmed. I accept that reality but the heart doesn’t care. It still longs for what could have been.

I was approved for Social Security Disability when I was a mere 32 years old. At the time, I saw it as a temporary condition that I would change in five years, ten tops. After eight years, I am still struggling to find a livelihood that can support me with my physical limitations. No luck yet. Part of the problem is that I doubt myself too much. I have been out of the workforce for so long and my brain fog has gotten worse so that I don’t trust myself to be able to think properly when it counts. I lack the confidence to put myself out there.

I don’t stress aging, at least not my body aging. I fear the progression of my illnesses and their proclivity to multiply. I started with the chronic migraines, which I thought was a living Hell. Now I know better. I would willingly sacrifice part of my lifespan if I could live out the rest of my life in relative health, able to do all the things I love to do.

Fibromyalgia Awareness Day

Today is Fibromyalgia Awareness Day. Due to my involvement in the National Fibromyalgia and Chronic Pain Association, I was urged to send a request to my governor – the infamous Chris Christie – requesting he sign a proclamation declaring today Fibromyalgia Awareness Day for the entire state of New Jersey. To my delighted surprise, he signed it.

NJ Proclamation 2014

New Jersey Proclamation 2014

Fibromyalgia is a disabling illness that affects about 2-5% of the population in the U.S. and around the world. It is a central nervous system disorder that causes sensitivity to pain, central sensitization, chronic fatigue, sleep disturbance, stiffness, cognitive dysfunction, bladder and bowel problems, migraines, and more. Fibromyalgia rarely occurs in a vacuum; the vast majority of patients will eventually develop other health issues – e.g., lupus, POTS, arthritis, spinal problems, EDS, connective tissue disorders, RSD, etc. I consider fibromyalgia to be an opportunistic disorder. It will heighten the symptoms from any and all of the other health problems we have. It will make the pain worse; it will make the brain fog more pronounced. That is why it is important for patients to get all of their health issues under control.

No one chooses to have fibromyalgia. It is not something to aspire to. It irrevocably changes your life. You have to cater to its needs constantly by pacing yourself during normal activities. You have to take more frequent breaks in order to avoid a flare up. Things you once took for granted now have to be planned well in advance. You want to go food shopping? Then you have to avoid all strenuous activity for the entire day. You have to plan it around other people’s schedules so they can go with you because you can no longer lift heavy or awkward items. Some days you will need to use a cane just to be able to walk the aisles in the store. Some days you will have to swallow your pride and use one of the electric carts provided by the store. You will have to endure the stares from other customers as they see a relatively young person who does not appear sick using the electric carts that are usually used by the elderly. Some customers might even come up to you and scold you for it. It is not easy looking healthy on the outside while your body is a mess on the inside. If I wore my illness like a dress for all to see, I am convinced people would look away in disgust.

For all those suffering from Fibromyalgia, this is your day. Awareness is key to managing this illness. We need doctors to understand us and we need the public to not shame us.

What is Real?

What makes something real? I really want to know (no pun intended). I recently got into an argument about what makes an illness a real illness. So many illnesses start off as being attributed to stress – e.g. lupus, multiple sclerosis, arthritis, ulcers, migraines. If an ailment is not properly understood, it seems to be brushed aside as yet another consequence of stress. Patients are told to buck up and get over it; think positively and carry on. Just because medical technology has not gotten to the point where it can detect an illness does not make it psychosomatic, a figment of their hypochondriac imagination, or (my favorite) depression. Nowadays it is accepted that MS is a real disease. We would never dream of telling a MS patient that they would feel better if they just got out more, or exercised more, or thought more positively. We wouldn’t call someone in the midst of a migraine lazy for needing to lie down in a quiet, dark room to rest. Fibromyalgia and chronic fatigue syndrome both have a large body of scientific, peer-reviewed research behind it. So why do people, including doctors, continue to still insist they are not real? Just because there is not single test to detect either disease, just because there isn’t a cure doesn’t mean these are not real diseases.

The person I was arguing with pointed out that you can find a study to prove anything, that often current research will negate research that is 10 or 20+ years old. That is true to a certain degree. There is a lot of flawed research out there. This is why research is not acceptable until it has been peer-reviewed and replicated. The scientific method states that in order for an observation to be valid, it must be replicable. Also, people will erroneously believe that an earlier study has been disproved (I am talking about medications and supplements here) when abuse of said substance results in different results. Of course the end result with be different if abuse occurs. Duh! Case in point: way back in the 1990s, creatine was considered a wonderful supplement for bodybuilders to take. Now the media treats it like a pariah. Why? Because a bunch of baseball players, among others, abused it to get astronomical results. That doesn’t mean it is a bad supplement to take. Taken in moderation or when a person has a deficiency in it can have wonderful results. Bottom line is when research is peer-reviewed and replicable, it can be trusted as fact. If we doubt ALL research, science will come to a standstill.