RIP – 9 Things I Miss About My Old Fibro Free Life

RIP – Mourning The Loss Of Your Pre-Fibro Life

I lost a dear friend. It’s been eleven years now, but I still miss him. He was married with three girls. He enjoyed being active with his wife and children. He would take them swimming and fishing. They played in the snow together.

He was very active. He liked to run and ski. He was an avid gardener. He enjoyed skeet shooting and target shooting. He was a hard worker. He started his own business and worked 18 hours a day to get it up and running. It was quite successful until near the end.

His life was taken from him, at least the life he knew was taken from him by fibromyalgia. It’s been eleven years now and his life will never again be the same. He is still a fond memory, but I miss him every day. But now I live and battle and strive to exist and to be meaningful in spite of fibromyalgia. I still have hope for a new life with fibromyalgia.

Nine specific things my old self didn’t have to worry about, which is nine things I miss about my old fibro free life.

rip_hope1. No chronic pain

2. Appropriate energy

3. Sufficient strength

4. Ability to be spontaneous

5. Ability to work

6. Lack of sleep problems

7. The ability to remember everything I normally could

8. Participate in hobbies the fibro took away.

9. Participate in everything else the fibro took away.

But until I get back to my old self, yes, I hold out hope that I will be fibro free and back to my old self, either in this life or in the next life, I will be fibro free.

Fibro Whatchamacallit

Fibro Whatchamacallit

I want to write about one of the other symptoms of fibromyalgia. It is called fibro . . . um, you know, um, its . . . where you know what you want to say but can’t think of the right word. You know, it’s where you know what the word is, you know what the word means and you know how to use it. You can describe what it means but you can’t think of the word. I want to write today about fibro- . . . it’s where you can’t remember the word . . . fibro-whatchamacallit but you know it’s the right word. Oh ya, its fibro fog.

Fibro fog is more than forgetting words or names. Fibro fog gets in the way of remembering or helps you to forget common and simple tasks.

When I try to describe fibro pain symptoms to someone who doesn’t have fibromyalgia it is hard for most people to understand the pain and the constant flu-like symptoms and the over all malaise.

fibro_fog2I think more people can understand fibro fog better than fibro pain. See if you can relate to these scenarios?

Have you ever spent a half hour looking for you glasses only to realize they were on your head? Have you ever looked for your glasses only to find that they are on and you didn’t realize it? Some things are just to embarrassing to admit to.

Have you ever gone into a room to get something and while looking around for it you realize that you don’t know what your looking for?

Have you every sent your kids throughout the house to hunt for lost car keys only to have your children point out the car keys are in your left hand?

These scenarios are just a sample of what fibro fog is like. It is more than forgetting. Fibro fog can make you more easily confused, harder to learn things and it can be harder to concentrate.

Here is another exacerbating issue of fibro fog, one of the symptoms that bothers me the most. My chronic daily pain will spike and I go through various rituals to fight the pain. Sometimes I’ll put the heating pad on my back and recline in my easy chair. I practice deep breathing exercises and then thirty minutes later I realize I forgot to turn the heating pad on.

Other times I will put a blanket on, remember to turn the heating pad on and a while later realize I forgot to take my pain meds. If you’re in such terrific pain, how could forget to take your pain meds? I do, more often that you might believe.

Sometimes, if you’re too despondent with fibromyalgia and its myriad of pain and symptoms the fibro fog can make you feel dumb.

I hope that people who read this little article on fibro fog will understand how complex fibro is and if it frustrates you to know someone who has fibromyalgia, just think how this illness affects us. We can plan from one minute to the next. We can be happy one moment and despondent the next. We can be ready to go one moment and in a flare up the next. The pain is awful and the fog just makes a bad thing worse.

Troy Wagstaff ©

What It’s Like to Be Me With Fibro Fog

What It’s Like to Be Me With Fibro Fog

I’ve had Fibromyalgia for more than thirty years. When I was first diagnosed with my symptoms, they called it Ankylosing Spondylitis (A.S.), a “young persons” arthritis. The symptoms of Fibromyalgia matched remarkably well with A.S.

Over the years the types of pain and malaise have waxed and waned and even changed over the years. I have new pains mixed with the old as well as non pain symptoms develop.

More than thirty years later, my pain can be described like having the dull, aching flu-like symptoms throughout all the soft tissue in my body. This causes some of my joints to ache as though I had arthritis.

I also have muscle spasms throughout my back unless I take muscle relaxers then I just feel the sensation without my muscles contorting.

Fibro Fog

Fibro Fog

The symptom of Fibro Fog is, as far as I know, unrelated to the pain and just another menacing symptom. The problem for me talking about Fibro Fog first hand is that I don’t know if I am leaving details out or not, because part of fibro fog is memory loss.

When I was correctly diagnosed with Fibromyalgia about ten years ago, I did not have fibro fog. When I did start complaining about fibro fog symptoms, my doctors blamed my symptoms on the drugs I was talking. The number one offender being narcotics.

As time went on, I started to notice certain patterns of fibro fog which included memory loss. This memory loss was unique because of events that I knew I should remember but couldn’t. I wanted to say a word and I knew what the word meant and why I wanted to use it, but I couldn’t remember the word. I could even describe the word yet I could not recall the word itself.

I then started having short-term memory loss. I started to learn early on to write questions on paper when I went to a doctor appointment so I wouldn’t forget the questions. I would take notes during the appointment so I could remember what the doctor said.

In spite of what the doctor would say about my memory and it being the side effect of the drugs I was taking, I persisted in pushing them about the memory issues. I had a feeling it was somehow related.

I read a few articles on fibro fog and changed my approach with the doctors after they still denied fibro fog was a symptom. I would ask very specific questions about my memory and could that specifically be related to the drugs. More often than not, they would say that the drugs shouldn’t affect me that way. It took a couple of years for the doctors to admit to fibro fog.

Meanwhile, I felt like I was slowly losing my mind. Somewhere along that time frame one doctor suggested taking up a hobby. Physical hobbies are difficult for a fibro patient to do. After several months of being badgered to pick up a hobby, I decided I would get back into studying history. I’ve always enjoyed history from grade school on.

I got a few history books from George Washington to Abraham Lincoln to WWII and a couple of general history books. I decided I wanted to devote my study to the North African and European part of WWII. I have read more than twenty books to date on the subject with about twelve more books waiting to be read.

Having a hobby didn’t seem to help my memory issues at all. I got involved with WWII history groups on FaceBook and started to write a little about what I new. This was enjoyable.

It did bring some joy into my life but didn’t really help with my fibro fog. I would start to have my back pain flare up and then radiate from my lower back to my neck and knees and realize I was four hours late on my pain meds. I would get up and go to another room where I keep my pain meds. I looked around the room while in pain and forgot what I was looking for.

After a degree of frustration I would go back to my recliner and then the pain would remind me, “oh ya, I need to take a pain pill.” I went back into the other room and forgot again what I was doing. After a couple of minutes I would realize I was looking for the pain pills.

How can I have bone crushing pain, because I was late with my pain pills, and then forget that I was looking for them? Amazing.

Many times I have been in mid sentence only to forget what I was talking about. My fellow conversationalist would remind me what I had just said and sometimes I would go on with my conversation while other times I would say “I forgot what I was talking about.”

This happened at the doctor’s office more than once and finally I had enough presence of mind to say, “this is it, this is what I am talking about right here. I don’t know what word comes next.” My doctors finally started to accept the idea of me having fibro fog.

My fibro fog has improved a little and I’ll tell you how that happened in another post. Sadly though, in spite of some interesting therapy, I still suffer fibro fog.

Troy Wagstaff ©

How Fibromyalgia Affects My Daily Life – Pain

How Fibromyalgia Affects My Daily Life – Pain

The way Fibromyalgia affects my daily life can be summed up with two words, freedom and reliability.

Having Fibromyalgia is like putting an innocent person in shackles and taking him to jail. Except you don’t take off the shackles. His freedom is taken away. He can barely move around in the small six by eight-foot jail cell.

My jail cell of Fibromyalgia is made from pain and flu-like feelings all over my body with stiffness and muscle spasms acting as the jail house bars. Both the physical and mental fatigue of chronic pain along with memory problems are my shackles.

My rigid medication schedule is the lock on the door and the key to unlocking the door is ephemeral at best. The key to my jail cell comes and goes with no notice and no regularity. Like a hunter hunting his prey, patience is the key. The key being in my hand, one moment and gone the next due to the conflicting nature of this illness.

I can wake up feeling great and within minutes or hours I can feel a paralyzing sense of fatigue with pain trying to push its way out from the core of my body that feels like a dull aching pain that shoots burning, piercing pain in my brain that wants to explode but cannot, all it can do is register pain. I have no motivation. I remain still and ache. With the violent intensity of the pain and a case of fibro fog I forget to take pain relieving medicine that would take the edge off. Often I feel good enough to go to the doctor and then as soon as I walk through the door, I get hit with an overwhelming desire to sit down. I have good days and bad days. I have good moments and bad moments in the same day. The cycle between feeling pain and feeling good runs in hyper speed.

Although pain is the one constant in this disease, it has so many variables. Fibromyalgia is an illness of contradictions. It is a physical and emotional roller coaster of pain, agitation and emotion.

how_fibromylagia_affects_my_daily_life_pain

Fibromyalgia makes me and most patients hypersensitive to new pain as well as creating its own pain. Having the flu or a cold is fifty times worse for me or anyone with fibromyalgia. Fibromyalgia takes the pain signals and amplifies them so a routine sore knee can feel like the last stages of arthritis before a knee replacement.

Along with countless other Fibro patients, I have fibro fog which makes it hard to remember names I knew ten years ago. I can remember a word I want to use. I know the definition and I know how to use the word in a sentence, but I can’t remember the word. I can’t remember what my wife told me ten minutes ago. I forget what I was thinking about five seconds earlier. I can be in the middle of a thought and ten to fifteen seconds later I realize I am thinking about something else.

I have to plan my activities to conserve energy for a required trip to the doctor or to attend Church or a movie. Most activities I want to do only occur when careful planning and having a good day coincide. The rest of the day is spent recuperating from the activity.

Often I find myself coming home from a small errand or trip to the store only to find myself still recuperating four hours later.

Having the lack of freedom makes planning future events very difficult because one bad day can wreck my well-made plans. That’s where reliability comes into the picture. In spite of the well-made plans you cannot be reliable for those who are included in your plans. A flare up or waking up to a bad day can throw your well-made plans into the fire. With Fibromyalgia, the only constant is contradictions and inconsistencies.

Letting friends and family down is not only hard on them. It is also very hard on me. It is usually easier to seclude myself from others so I don’t have to let them down.

Since fibromyalgia is an illness of contradictions and inconsistencies I never know what tomorrow will bring let alone what the next minute will bring. Because of this I can’t rely on my plans an hour from now or a week from now. You have to take life day by day, hour by hour, minute by minute. That’s how fibromyalgia affects me day by day. This is just a sample of how Fibromyalgia affects my daily life.

Troy Wagstaff ©

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