Building The Love Shack

I have received multiple emails asking questions about how I do it with Fibromylgia? How do you keep going?

As most of you know after reading the page  Our Story, on this website, I was diagnosed with Fibromylgia three and half years ago. No one is sure how long I have had the disease before I was diagnosed. The only thing that all the doctors are one hundred percent sure of, is that extreme stress brought on what we call “the straw that broke the camels back.”

When I was twenty-seven years old, I was first checked for Multiple Sclerosis, because of early symptoms of Fibromylgia. That turned out negative.  I first was symptomatic of Interstitial Cystitis about the same age.  When the Irritable Bowel Syndrome started, I have no idea. Looking back at my medial history, I missed almost the whole 4th Grade with stomach issues.

The heart palpitations started at age twenty-eight. I remember that day clearly. I also remember my friend panicking while what felt like I was having a heart attack, her trying to get me to go to the hospital, and her threat of if I died on her, she was going to kill me.  That one still makes me smile.

My official diagnosis came after the grocery store incident. I was walking with just a few items in my cart and something felt very wrong. I felt like I couldn’t move. My body was not working, my legs felt like I was going to collapsed. I made it to the cash register. The poor cashier looked at me with fear in her face, and whispered to me are you all right. She could see the fear in my face.

I told her I felt ill, could she please just cash me out. I got to the car and made it in the house. A few minutes later I collapsed on my office floor. I couldn’t reach the phone. It felt like every bone in my body was breaking at the same time. I sat for many hours alone and scared. Finally the pain started to ease. I was able to get up. The next day I called the doctor and was put off work for three months. After many test and spending most of that time in bed, with legs that just didn’t seem to want to work anymore, I got my diagnoses.

I battled and struggle to get up and keep moving. Finally, I was able to get down to my gym and slowly started walking again, five minutes at a time and then with much determinations I was able to go back to work.

The first few weeks at work, I didn’t know how I would make it through the day. But I did, I made myself. Eventually I was able to get into a regular routine and I can work. I have had the option for three years to be on disability. I’m not ready for that and as long as I can work,  I will.

My son once said, I don’t remember a time when you weren’t sick from something. He was right. There was always something, and it seemed that no matter what it was a cold or even flu, would affect me worse than anyone else and last twice as long. It still does.

I like to say that I am one of the lucky ones because I don’t have depression. That is true, I don’t suffer from long-term depression, but I do get low moments. Ironically, the treatment for my low moments is just the opposite of what people who suffer from depression is. Normally, in Mental Health they teach you to not go to bed, for me when I have them, it means my body and mind are wore out and going to bed is just what I need.

My morning all start the same way, once I used to jump out of bed, now I roll out of bed. Mornings are the worst. I am stiff and don’t feel like moving, but I get up and take a bath. The warm water loosens up my joints and gets me moving.

Once my day starts I have energy and low spurts. This disease does not affect people day by day, it affects them hour by hour.

If you could see me at work, running around and doing patient care, you would never know I have the disease. Movement helps me a lot. Being distracted from myself helps more. If I sit to long, I do this very interesting walk when I first stand, it’s almost like my muscles and joints are re-lining up and then everything pops back in place and off I go again.  I can walk the tread mill and run on flat surfaces, but stairs are bitch. At the end of the day, I am happy to sit and stretch out in my bed.

Then there are the other days. Those days the disease wins, and sit I must do and sit I do.

It sounds like I have it all under control. No I don’t. Know one with Fibromylgia has it all under control because you can not control Fibromylgia. Fibromylgia is not only a painful disease, it is a frightening disease. On your really bad days you are afraid they will turn into this every day. That does happen. The pain can take over your life and then take your life away.

It’s a  cruel disease. Unlike other illness it won’t end your life, it takes your life slowly, one piece at time. You can do nothing but watch it take parts of your life way.

Here is what makes me lucky. First, I have family and friends who support me. They don’t understand what I am going through, they just accept that I am and help me in any way they can. They stop me when they think I am pushing to hard and let me go when they see I am managing. I no longer have to ask for help. They choose the elevator over the stairs. Pick up things that are heavy before I can reach for them. They step in front of me when I am walking and someone ignorant of what they can’t see cuts me off.

They help with family get to together, work at the Love Shack and make excused for us to stop and rest, when I know they don’t need it but think I do. They keep me included in their lives and we find things to do that we can do. I still go out when I don’t feel well, because with this disease that could change in an hour and I could feel better or worse. They understand that and help me keep active.

Second, my staff at work, most of them know I have this disease and if I really ever need any help, I know all I have to do is ask. I am also blessed to be working some where they accept illness. When our staff is sick, time off of work is not considered not doing your job. It’s time needed and no questions are asked. Again. I am lucky.

So far in two years I have not needed that time off . I believe it is partially related to the place I work and the people I work with. The other part is because of the support at home and in my personal life.

What can you do to help a person with this disease? Be there. If you make plans with them, keep them. They may have struggled to get ready to go out with you. Let them do what they can, don’t judge it by yesterday or an hour ago. Judge it by this minute.  Understand that they are in physical pain and some days parts of their body move and hurt differently than the day or an hour before. They are not lazy or tired, they are exhausted. They may bounce right back in thirty minutes, or not.

Each person is affected differently by this disease, and they can have multiple other health problems at the same time. Again each one is different and affects them differently. People who have Fibromylgia see many different types of doctors, because there is no cure for the disease, they treat the symptoms for the different aspect of the disease.

I can not tell others I know how to manage their disease. I can tell you how I manage mine. I eat a very healthy diet and take supplements, they help me. Why because I have IBS and just had my lower bowel removed. My body is sensitive to food. It reacts very badly to some foods.

I have a gym in my house. That is not a luxury, that is a necessity. I have to keep moving and the days I feel unwell I can’t get to the gym, but I can get to mine. I keep my weight down, not for vanity, but because my body moves better when I have less body fat. I go for a tan, yes I know it’s bad for your skin, but the sunlight helps my muscles and makes me feel both physically and psychologically better.

I rest when I need to, that was the hardest thing for me to learn. I save my energy for when I am gong to work or doing something I have planned. The thing that has helped me the most is finding things that distract me. My writing has been one of the biggest gifts I received.

Does this disease scare me. Oh yes it does. My biggest fear in life is not the pain. It’s ending up living in Long Term Care. I  hear people in the medical field make comments like: that one is a drama queen, she is seeking attention. Comments about just putting them in the bathroom, when they were just put there. Other comments about seeking pain med’s when they just gave them some.

People who have Fibromylgia will not always tell you when they are in pain. It is part of their life and they learn to accept it. When they tell you they are in pain, they are.

I am scared of who will take care of me. I have constant pain, differently in movement, IBM and ICS. I am now just starting to also get age related illness, so add-on the arthritis. Who will care for me terrifies me.

For some people support groups work for them, for me it does not. What works for me is staying connected to positive people and mentally healthy environments. This meant walking away from people and places. That is not always easy to do, but with Fibromylgia , you are fighting for your life.

The good news is we are not crazy, hypochondriac’s any more. The World Health Organization acknowledges our disease. Now we are waiting for some of the other medical profession to figure that one out too. Employers need to become educated. Family and friends need to learn to support.

This is my face behind Fibromylgia. If you talk to others, you will hear similar and different stories. I hope this helps.

PS. I will be returning to work on Wednesday, after four months of being off with my surgery. What I look forward to the most, is the smiles and the Good Mornings I receive each day as I walk through the door. I can’t tell you how much I missed that. You see that alone is the support.