Unfit, FitBit


A few days ago I mentioned that I was just purchased a FitBit and was going to begin tracking my steps. My project has begun and I have been wearing the FitBit for a week and have begun to depend upon this little handy gadget to help me monitor and pace myself. Since I have been wearing it, I haven’t had a body crash and I can stop myself before it happens. I am pleased with this aspect of the tracker, in that it is preventing me from going beyond my current limits.

During this past week, I have averaged between 1 and 1.25 miles for the day. At my height and weight, that is between 2400 and 3000 steps spread throughout my day. I can only walk 250-300 steps at a time, so this means that at the most I can walk 300 steps an hour, if I am up 10 hours a day. This is not very many steps, since going to check my mail uses up 150 steps and walking from my front door to my bedroom is about 30 steps.

For all you healthy people, think about it. How many steps does it take you to go from your house to the subway, or walk from the train station to your office? Some people may use up my total step count for the whole day before their work day even begins.

Maybe now my friends who don’t understand my limits, will start to comprehend how restricted I am and when I say I am out of steps, they will “get it”.

Head together, body falling apart


I have always been a strong person, emotionally. I don’t fall apart easily, I don’t cry at the drop of a hat or struggle with depression. I take things in stride and deal with situations as they occur. These personality traits have served me well but how do you stay strong when your body has a mind of it’s own and is falling apart even when you are treating it with all the respect you possible can.

Sometimes I feel like Mr Potatoe Head, and that my various body parts are falling apart and need to be put back together again. Yesterday I read another blog about a woman with ME dealing with this same situation and it struck a big chord because this is something that I have also been struggling with. Aside from all the standard issues and problems that accompany Fibromyalgia and Chronic Fatigue, I am also now dealing with other things that are happening to my body as a result of no physical exercise and limited movements.

I am gaining weight, I have elevated cholestrol and triglyceride levels and have also developed heart problems. All of these things at the present moment are being attributed to lack of movement and exercise. But how can you exercise when you are in constant pain and can’t stand for more than 10 minutes before your body feels like it’s going to collapse. How can I walk around the block, when the most steps I can take at one time is 300 and then I feel like I’m going to collapse.

I am a very logical person and started thinking about this as a science project. I need evidence, hard cold facts in order to try and get myself moving alittle more without causing a crash. I recently purchased a fit bit activity tracker and I am trying to figure this out. Can I move more, if I spread out my movements equally over the course of a day? Can I walk 600 steps if I do it over the course of 2 hours and not in one 10 minute walk?

While regular healthy people are occupied with normal life issues about getting children ready for school or planning a last minute summer getaway or inviting friends over for a holiday barbeque, I am consumed with how to extend my steps and stop my muscles from continuing to atrophy.

I never won a science project at school, but my current science project has larger stakes attached to it and the difference between winning and losing is quite costly.

Vampires Amongst Us


Vampires are very popular these days, on television, in books and even on the big screen but these vampires are all in people’s fantasies and imaginations. I know a real vampire, real in the sense that this person may not bleed me dry, but does suck all the energy and life out of me. There are many negative people in this world and I unfortunately have one in my life that is a constant reminder to me of what I don’t want to be like.

I am trying so hard to remain positive and work on myself to project positive thoughts and energy. I recently listened to a book entirely about the “Laws of Positive Attraction”. Alot of the messages in the book struck chords with me and I have been making strides towards changing my thought pattern. I have never been a negative, down person, but I am tweeking the way I think and the thoughts that I put out to the universe. I think that’s why being around this individual is so difficult for me because I feel the negativity and bad vibes and I don’t want to attract this into my world.

There are many lines that I find myself repeating from this book. I am constantly saying to myself “wanting, allowing, receiving”. These are 3 things that will open the pathways to positive attraction. What is it that I want in my life, then I need to allow myself to receive them. This takes work, if I want a new car, it is not going to just magically appear on my door step. The law of attraction requires alot of work but this is work that is of a positive nature and can improve your thoughts and your life.

Another important lesson I learned from the book is that we must accept people as they are and not hope that they will change. Tolerating a person is not accepting them because tolerating is a negative emotion and will just cause myself to feel down and negative. I started thinking about my relationship with this friend and realized that for the most part I am just tolerating them and not really accepting their true nature. I either need to adjust my expectations of this friendship and of my friend or I need to walk away from this friendship so that I can continue my journey into the positive light, without backstepping each time I have a visit or phone call from this individual.

I think I am holding onto this friendship because I have lost so much already since I became ill with this chronic condition. How much more will this illness take from me, it’s already taken my freedom, my job, my house and many of my friends. But what I really need to evaluate is if I was healthy, would I still want this person in my life. If the answer is no, then really the illness hasn’t taken this from me because I wouldn’t want the relationship under any circumstances.

Just Another Day in Paradise, without the Paradise


When you are ill and can’t work, each day just is like every other day. It doesn’t matter if it’s a weekday or a weekend, because you can’t do anything different. It’s not like when a weekend comes around I can plan exciting trips, or even day trips to the beach or amusement parks, or go see a Broadway show or even a movie. I have to follow my limited activity routine every single day. The only difference for me on a Saturday or Sunday is I know I don’t have to go to a doctor’s appointment.

Every morning when I wake up, I really don’t care what day of the week it is, I’m not rushing to a business meeting or taking a child to school or to a sporting event. I am thinking will I have energy to survive today and do the few things I have on my list that need to get done.

My life revolves around doctor visits and rest days and in between I try and occasionally see a friend for lunch. There are not many activities you can do when you can’t walk more than 300 steps at a time and then need to rest for an hour afterwards.

Friends are going to beaches, renting summer houses, taking extended vacations abroad and are sadly counting the days when summer will end because summer is funtime. But again, season to season, I still am stuck looking out my window watching the world pass me by.

I try and stay positive and tell myself I always hated going to the beach and sitting in the sun, so who cares that I am sitting inside. And in winter I’m also thrilled when I get to stay in on days where the weather is below zero and snow is falling. But what about the other 300 days of the year when the weather in New York is perfect for walking and exploring. I loved to walk when I was healthy and could walk from one end of Manhattan to the other. That’s what I miss most, the ability to walk when and where I want without anxiety or worry.

So as the days begin to get shorter and the sun is setting earlier, I think about next summer, when I will be able to walk again and plan trips and live a more regular life. Through all this hardship and suffering I still do believe that my life will get better. I have hope that one day I will be stronger and healthier and that I too will have a life on the other side of my window.

Does Freedom come with Acceptance?


Acceptance is a tricky word when trying to explain to people that I have “Accepted” my illness. Acceptance does not mean that I am giving up or giving in. In fact, the ability to accept one’s current situation comes from a place of incredible strength and not weakness. I wish people in my life would understand that if I was giving up, I wouldn’t get out of bed every day and face the world. I wouldn’t continue to go to countless doctor visits or try new supplements or medications or continue with physical therapy.

Accepting the reality of my current situation means that I don’t have false expectations of myself or others. It means that I can finally look truthfully at my current life situation and try and figure out how to live differently, but still live a life with meaning. Unfortunately we can not alter what has happened to us in the past, we can only adjust our expectations and our actions to fit into our new life.

I am not a buddhist, but recently read a very insightful book by Toni Bernhard entitled “How to Be Sick: A Buddhist Inspired Guide for the Chronically Ill”. I would highly recommend this book for anybody struggling with a chronic health situation. Buddhism teaches that one of the main paths to spiritual growth and awakening, is the acceptance of all things, as they are in this moment. It teaches us to acknowledge that things are the way they are and that we need to accept the situation as it is. Rejecting our current situation and pushing reality away, only causes us more hurt and suffering. Toni’s book shows us how she dealt with her suffering and was able to find happiness even in the most difficult situation.

I have to accept my limits or else I will constantly be relapsing and collapsing and what kind of living is that. I am still on my journey to find happiness and contentment, while living with a chronic condition, but at least I have stopped pushing the truth away and have begun to accept where I am.

Perhaps happiness is right around the corner. One can only hope….


Happy Birthday to M.E.


Four years ago, on my birthday, I was diagnosed with this dreaded illness. At first I was relieved to finally get a diagnosis, but once I did research and found out about what this illness is, relief is not the emotion I felt. How can you be relieved to have an illness, where doctors don’t know a definite cause and therefore can’t give you something to cure it? Managing symptoms is helpful, but it doesn’t necessarily restore your life back to the pre-illness state.

Over these four years, I haven’t been able to move forward with my life. At best, I’m treading water and hanging on for dear life. The world around me is moving fast and my friends have advanced their careers, had children and even some grandchildren, there have been vow renewals, new marriages, divorces, ups and downs in the normal cycle of life, but really I haven’t experienced much of any of these things, as I go from doctor to doctor hoping that one of them will give me something to make me feel better. Even a ray of hope that a research study is underway would encourage me, but so far this illness really mystifies most.

After this length of time, people don’t want to hear about my troubles anymore and I do my best to down play my situation when I am with people because I’d rather hear their stories than share my own. If someone asks about my situation, I will briefly discuss it, but if they don’t ask I usually don’t bring it up. Except recently, I was with a very close friend who had been complaining to me nonstop about her own situation (and let me tell you from where I was sitting there was nothing to complain about…she had health, a good paying job, 2 great kids, a home and the ability to make choices in life) and when there was a break in the conversation I said that it’s been a while since you asked me how I was doing. Her response was, “What’s to ask, nothing changes with you, it’s the same day to day. It’s like a man that loses a leg. At the beginning it’s shocking and you keep asking how are you doing, but after a while he’s just a man without a leg and you stop asking.”

I have plans to meet a friend for lunch today to try and celebrate the day, but in truth, I don’t really feel much like celebrating life at this moment. I accept my situation and deal with things as they are put in my path, but being happy about it is a whole other story for a whole other day.