Posted in Chronic illnesses, Life in general, Living Life As I See Fit

I am Not Superwoman But I Got This!


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Nope.  I am not.  I have no superpowers. No super speed or strength and I sure I can’t fly. I am not superhuman.

I am not Superwoman but yet, I am determined to be her.

I sometimes forget that I am only human and not capable of doing it all.  Maybe, once I did, but not anymore. I can’t spend a long day at work, come home to cook dinner, and then clean.  I can’t spend a Saturday shopping, cleaning, doing laundry and everything else in between.  Once upon a time, I could but I no longer can.

Why do I keep trying to convince myself I can? Why do I keep doing it? Why do I think I can?

Because I did. I used to.

And those feelings nag at and stay with me. I used to be able to carry 3 or 4 heavy cloth shopping bags and not even think about how heavy they were. Now, I am lucky I can carry one. But I used to carry 3 or 4! And if I could do it before, why can’t I anymore?

Because that was before chronic illness and pain dominated my life.

READ MORE AT http://themighty.com/2016/05/doing-it-all-while-having-chronic-disease-and-being-sick/.

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Posted in Chronic illnesses, Motherhood, Tough Choices

Another New Year is Upon Us


As many of you may have noticed, I have not blogged here in a while and I haven’t done it that often in 2014. I can honestly say that 2014 has kept me busy. I have focused on my freelance writing and I had also posted at my single mom blog, in addition to my full time job. I have also been considering making some professional changes. I don’t want to go into any detail but it is something that long overdue.

One of things that I put aside was finishing up a novel. I started writing one, finished it and never got around to actually finalizing it.  I wrote another and blogged it.  I finished it as well but never really got around to editing and updating it. It is not that I don’t want to finish and publish a book. It is my dream but my dream has to be put on hold right now.

There are other things that I recently decided are important for me to work on. My RA and fibro have not been as well managed as they were previously. I don’t know if this is a result of recent stresses or just because I have started my seventh year after diagnosis living with diseases. I have also decided that while I had counseling in the past, I am struggling with other things I need to work on. I am smart enough to know when I need to talk to someone and when I need to work on myself. I am always willing to better myself because I don’t I can’t be the mother my children need and deserve.

In the past, I struggled with the setbacks that life handed me – chronic illness, my brother’s death, the end of my marriage, my mother’s stroke and then just trying to be alone with my kids and my life. I struggled with being enough.  For the longest time, I thought I mastered my biggest demons.  I mastered a lot but I am still not the best version of myself. I need to be the best version of me. I feel like I recently lost sight of who I am. I feel like I didn’t prioritize what was most important.  If I had, I wouldn’t have made a mess.

With a New Year just around the corner, I am working on making changes. I probably won’t have much opportunity to blog here but I haven’t lost my focus. I am just trying to figure out who I am again because I am feeling like I have lost that person.

Happy New Year to you and your loved ones. I hope 2015 brings you much good health and happiness.

Posted in Chronic illnesses

I Miss My Old Normal             


Up until recently, my RA and fibromyalgia had been well controlled.  I had been able to manage and live my life despite minor flare-ups.  However, the past few months have been difficult.  Years of taking anti-inflammatory medications has resulted in my having high blood pressure.  Not only that, my vitamin D levels are always very low results resulting in extreme fatigue.  And my conditions are not as well-managed as they used to be.

I used to miss being healthy and being the person I was before I got sick six years ago.  Now, I wish I was feeling as well as I did in the beginning of this year when my flares were minor and didn’t affect my day to day.

I figure I had a good run there and I made the best of it. That doesn’t mean that I don’t keep fighting.  I will always fight to make every day count. However, I am willing to accept that this is my new normal but I sure miss my old normal.

My life hasn’t changed that much.  I am still working hard, advocating, writing my chronic illness articles and hoping to one day to finish one of those books I started writing.  One of the things about being sick for years is that you know life goes on whether you are up for it or not.  You just keep going because that’s all you can do – and the other option is giving up.

I accept that my conditions won’t be well managed forever and that there will be setbacks.  I just know that I am living for today and not focusing so much on where my health will be in five years.  I didn’t do that when I was first diagnosed. Truth be told, however, I worried the first year but once I found a “normal,” I moved forward and didn’t give up on my dreams.  That is what I will continue doing despite the fact that I really miss my old normal.

I haven’t disappeared on you guys. I am still here, trudging alone and trying to enjoy every day. Last year at this time, my health was in a better place and I hope that it will be once again. In the meantime, I will just keep fighting to make the best of this life despite feeling sick and being in pain.

I figure my kids watch me and I want to make sure I continually set a good example for them.  I want them to see me as someone who can still love them and care for them despite being sick. And that is all I ask for when it comes to living successfully with my illnesses – that I can be the mother they need and deserve.  I don’t think that is too much to believe in.

Posted in Chronic illnesses, rheumatoid arthritis, Tough Choices

Wake-up Call


This past week has shown me how I need to learn to prioritize my health. I have been sick with the flu and I was sicker than I have been in a long time.  I have overestimated myself. I have gone back to taking on more than I can handle and dealing with stresses as if they are the norm.

I started getting sick eight days ago on a Friday.  I ended up leaving work at around 1 pm because I was feeling tired and feverish.  I figured the weekend would help to recuperate.  I seemed to get better at first but Monday came along and the flu symptoms started to creep up on me once again.

Come Wednesday and I can barely get out of bed.  Of course, I overestimated myself because I quietly told myself “it was just the flu” and all I needed was one day to recuperate and I would be back at work the following morning.  But the symptoms kept coming – swollen lymph nodes, sore throat, headache, body aches, and stomach problems.  But I told myself, tomorrow would be better.

By late Wednesday afternoon, I started experiencing severe abdominal pain I tried to convince myself would pass. See, I am very stubborn like that.  After nearly an hour of dealing with pain that radiated from my abdomen to my chest and my back, I realized that I needed to get to the hospital.  Again, as stubborn as I am, I got my kids and drove us to the ER.  I thought they would figure it out and send me home.

I underestimated how sick I was.  I arrived at the ER only to find myself with a blood pressure of 215/165 – a number that even shocked me.  I did not even realize my BP was up, let along that high.  I had been diagnosed with borderline high blood pressure or prehypertension previously and I have been very good about watching my salt intake and my diet so this I could not have predicted.  I really thought I had things under control but I was sadly mistaken.

I have a bad habit of overestimating and even underestimating myself and my abilities. Of late, I have been taking on more than I should and I have been struggling to handle stress.  This experience was my reality check. I spent a night in the hospital and my kids spent the night at their aunt’s house.

My biggest fear has been for the longest time that I would be a burden on those I love. But now, my biggest fear is my children losing their mother. How could I let myself get this sick? I don’t know but I know where I stand right now.

The hospital wanted me to spend another night there but I wanted to come home to my boys and I also didn’t want to add the stress of another night to the hospital bill.  I spent most of Thursday evening and all of Friday just trying to get better.  I now have to take a blood pressure medication daily but I am grateful that things didn’t get worse because with how high my blood pressure was I am lucky to be alive.  Between the flu and my RA meds and all the cold medications I was taking, I must have had an angel watching over me.

Those of us with autoimmune diseases need to be aware of the complications our illnesses pose. The complications depend on the disease and the side effects of medications used to suppress the immune system can be quite severe including infections that are hard to manage.  With RA, the complications affect the skin, eyes, lungs, blood vessels and heart and include susceptibility to infections and anemia.  Systemic inflammation puts RA patients at an increased risk for cardiovascular disease. Having RA also increases your risk of a stroke.

I have been lucky that my RA has been under control – at least I thought it was. I am fortunate because after six years, I show no signs of deformity.  But my blood pressure and my susceptibility to illness remind me that my RA really isn’t under control.  For me, it is my wakeup call. I need to go back to being serious about my health and managing stress.

I thought I was handling myself pretty well but stress has been a dominating factor in my life lately. I let things and people get to me and I shouldn’t.  I have made a decision that the only solution I have is to minimize or remove these people from my life.

I have to do what is best for me and my children.  Because, my kids need me to be their mother and they need me healthy.  My hospital stay affected them too. My five year old hasn’t left my side since I got home and my teen keeps checking on me and reminding me that he loves me.  I owe it to them to focus on being healthy so that they can have the best mother I can possibly offer.

Posted in Acceptance, Chronic illnesses, Life in general

What I Really Mean to Say


Living with chronic illness and pain is something that isn’t easily understood by people who are not going through the same thing. Moreover, the effects of illness are an emotional and personal daily battle.

Most people have this notion that if you look fine, you are feeling good or having a good health day. Many also don’t realize that even when we say we are fine, we really are not. At times when I say I am okay, I really wish I could share with people who don’t understand my ordeal how chronic illness and pain truly affect my life.

Every now and then, when I say I am okay or I am fine, I really mean to say:

(1) I hurt more than I can effectively express. The physical part is often easier than the emotional part. I have people in my life who don’t believe in the extent of my sickness and pain so I keep how I am actually feeling to myself and experience has given me many reasons to do so. I have had people who I once called friends and loved ones who have walked away because my being sick was too inconvenient for them. While I have learned that their actions had more to do with them than anything I did, it still saddens me because I would have been there for them.

I don’t have a lot of emotional support so I seek help therapy and I look for solace in prayer and in the things and the people that I love. These things have allowed me to a stronger person – both in conviction and in the ability to see past my limitations. So, yes I hurt both physically and emotionally but I have found strength I never thought I had.

(2) I am scared. I have read up on about Rheumatoid Arthritis (RA) and Fibromyalgia (FM). I know there is no cure for either and I don’t see remission in my future. I also know that I will never return to perfect health. I worry about what the future holds and where I will be in ten years or twenty years. I am only 37 so I have a long life with RA and FM. I worry about how I will take care of myself if things get worse and who will take care of my kids. I have valid questions but I know that these questions don’t have concrete answers.

Taking life one day at a time is all I can do and that is scary in of itself. I will never be my former self but I am working on maintaining some level of sanity when it comes to my health. While I am scared, I try to focus on the here and now so that I can make the best of my life with chronic illness.

(3) Life is just not fair. I am not always able to make plans because I don’t know if I will be able to follow through. I don’t know what the future holds because I have to take life as it comes. I can only be hopeful and I am. Chronic illness has taken a lot from me but I have taken a lot back.

No one said life was fair but it is worth living. While I truly believe that, I just sometimes want to vent and say that life just isn’t fair.

(4) It is not my fault. Being sick is not my fault but sometimes I feel like it is. I worked hard at every aspect of my personal life and professional life before illness and even harder after illness. I am a good parent and my kids are turning out just fine but sometimes I feel guilty that they can’t have the parent that I wish they had. I was a faithful and loving spouse but my spouse wasn’t. As a result, my marriage ended and while I know that had nothing to do with chronic illness, it happened after I was diagnosed and sometimes, it makes me second guess myself. I have been a successful employee and I have been a great volunteer in the community. I am a patient advocate and I am good at what I do. I have accomplished so many things despite and with chronic illness.

What went wrong – my getting sick – that wasn’t my fault and the bad things that happened after weren’t my fault either. All the good things were due to my hard work. Nonetheless, if I could I have protected my health, I would have done everything in my power to make sure I stayed healthy but I couldn’t. Further, I had no control of the awful things that happened afterwards. That just goes back to life simply not being fair. So, I didn’t mean to get sick – I really didn’t – that’s all.

Right now, I am feeling better than I have been in a long time – both physically and emotionally. Sometimes, I actually feel fine when I say I am and other times, I am not fine at all. When I am not feeling well, I have things to say. Yet, it is not always easy to say them.

***This post was originally a guest post at http://laborpain.wordpress.com/2013/06/12/what-i-really-mean-to-say-guest-post.

Posted in Chronic illnesses, Life in general

I am still not saving the world


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I have been dealing with a tension headache for a couple days now. These tension headaches have a tendency to make me feel that everyone wants a piece of my time and I don’t have that to offer.  I remember being a young girl with dreams about changing the world and making it a better place.  And for a while there, I still thought that I could.  I thought once I raised my kids I would but rheumatoid arthritis and fibromyalgia have changed my plans.

So, I am still not saving the world and I don’t think ever truly will be.  Most of my advocacy these days is behind a keyboard.  I have learned to be okay with that.  Mostly, it is because I am too preoccupied with being sick. About 75% of the time, I am wondering who hijacked my body and the other 25%, I am trying to get as much as I can done before the next flare up sends me under my covers.

Yesterday, I was so proud of myself. I cleaned up my place, did all the laundry, and took my kids out to a Halloween carnival. But all the bright lights and sound had their effect on me due to having a heightened sensitivity thanks to living with fibromyalgia.  Now, I have a tension headache, neck pain and very little energy.  I cannot hide out in a dark quiet room.  Life just doesn’t work like that way.

Sometimes, I wonder how I feel on any given day affects my kids.  One minute I am on top my game, and the next minute, it feels like have been boxing with Muhammad Ali and he has shown me no mercy despite my handicap. I feel like Muhammad Ali wasn’t kind at all to me yesterday and I am paying for it today.  I wonder how that affects my kids but I am afraid to ask them because I don’t want them to worry.

I know that I won’t be saving the world any time soon but I am doing the best that can considering the hand I have been dealt.  Feeling like this makes me feel defeated but I still know I am capable.  Right now, I just to rest so I can climb back into the ring and show that I am in fact strong, capable and willing.  I probably will never save the world in the way that I feel is amazing or superb but I am doing the best that I can to help others understand that life with chronic illness isn’t easy but life isn’t over either.  That is all I can do for now – it isn’t like I was born with a superhero cape.

Posted in Chronic illnesses, Life in general, Motherhood

An Early Morning Approach


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I constantly pride myself for being able to laugh even when I want to cry.  I have had some difficult times and I would like to believe the worst is behind me and maybe it is. I am hopeful that it is but I have just kind of learned to roll with the punches. And this whole laughing when I want to cry thing, not sure if it is something to be proud of.

Between two jobs, two kids, a bitter ex and a very nosey family, some days, I am not quite sure how I make it.  Sometimes, I am not sure how I make through the day without crying.  And how I made it through yesterday without crying.  My day started out with a nasty texts from the ex and a broken windshield. I told myself that crying or being upset wasn’t going to repair the windshield or change my ex.  Both of these, I had no control of.

I still worry about the future, about my chronic illnesses, about my kids and doing this all this my own, but mostly I worry about whether I am doing it right. I remember the toll that it took on me and I don’t want to go back there. Depression is one heck of ugly thing and I would never wish it on my worst enemy.

Despite my early morning approach to venting, I did get the promotion I mentioned in a prior post.  I am excited and nervous at the same time. My new position, while still within the legal department of company, is completely different than what I was doing before. I have confidence in myself that I will do fine but I have tendency to be my biggest critic.  I should remind my biggest critic how capable I am but it is like an inner voice trying to dissuade him from my goals.

I should know better. I write well and I have done well for myself in writing, advocating and my legal job.  I have done well as a mother – a single mother and I am more than capable of being successful but I have spent my whole life trying to find that something that will somehow make my life just right.  I don’t know what that is and as I get older, I am starting to wonder whether it even matters. My late father used to play the lottery every week and he would always say that his ship would come in one day.  When I was a kid with a wild imagination, that ship was a long and luxurious yacht. As I got older, that ship started to look more like a cargo ship and now, it is merely a broken speed boat. I wish that I could be that dreamer that thought her dad’s ship was a yacht but life’s challenges have forced me to see that ship differently. I don’t know whether that is good or bad.

As for my book, I am going through a frustrated author phase. I was so into it and everything felt so right and then, it didn’t.  And I am stuck trying to figure what direction I am going and I just have this sense that I may need to start over.  Essentially, the story line is the same but I just want to introduce it in a way that pulls the reader in and I am stuck trying to figure out how to make a dead womanizer the main character.  So, I am taking a break and plus, I have several articles to work on.

It is getting cooler and I am waking up achy in the mornings. Sometimes, I go to bed in pain. The winter months always leave me wondering if my RA is getting worse.  I don’t think it is but winter leaves me questioning my ability to manage it and balance it against my life. I think the part that scares me the most is that the returning symptoms make me wonder if disability is around the corner. So many of us are too young to be thinking about disability but we do. Sad, but true.

 I don’t remember a life before RA and sometimes, I wonder if my kids do – well, my five year old probably not but my 13 year old, perhaps is in the same ballpark as me – trying to remember a time where our lives were normal. I wrote about this in an article title Parenting with Chronic Illness: One Mother’s Lessons Learned.  You will have to check it out.  I have gotten back a lot of positive feedback on it.

Anyway, it is time to start my day and considering I did not fall asleep until 11 pm last night, that is a great feat.  Unfortunately, my tiring day was on my mind as was my formerly broken windshield. I took care of the windshield right away but I felt defeated and not because of the cost either (that bothered me too) but mostly because it was not a good way to start the day. So, guess what – today will be better. And if it isn’t, well I will do what I always do – laugh when I want to cry.  🙂

Posted in Chronic illnesses, rheumatoid arthritis

Stay Gone


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My old friend, RA, has returned after being away for the entire summer.  As usual, RA is uninvited and invading my life especially as I sleep.  Mornings are now cooler so I awake to a cooler bedroom and as soon as my feet hit the ground, I know that my RA troll has visited me overnight.

As I struggle to move and get ready in the morning, I take inventory of all the joints that ache and that are stiff.  Moreover, my low back pain has returned – this pain is as a result of a car accident from over two years ago.  I have also been dealing with a stiff neck since a newer car accident where I was a passenger three weeks ago.  I am sure my RA and this newer accident has aggravated some old injuries but I don’t know, I am just trying to make it through every day.  I wish my RA would just stay gone.

Other than that, life has been normal crazy. Still writing a book, still maintaining blogs, still advocating, still working and being mom to my boys.  I am still doing all of these things despite RA. But RA can suck the life out of you and then some.

Not much of a post today – just updating and complaining some. After all, I am only human.  I am worn out from the RA troll visiting at night.  I am achy and sometimes, I limp especially if I sit for too long. I hate how the cooling weather makes me feel like I am 77 instead of 37.

Stealing the lyrics from a Jimmy Wayne song and creating my own parody.

I am no longer going out my mind and I am feeling good.

I am not in remission but I am back among the living.

Yes, there were tears you once made me cry

But I can now honestly say, I like it this way.

RA, stay away.

Stay right where you are.

I like it this way.

It is good for my joints

And for my self-esteem.

I haven’t felt like this in God knows how long.

I know everything will be okay as long as you just stay gone, RA.

Please RA- Stay Gone.

Some awful poetry there but I got my point across. I need my RA to stay gone. I am so tired of it testing my patience. RA – I need you to stay gone.

Posted in Chronic illnesses, Fibromyaloga, rheumatoid arthritis, Tough Choices

Strength is a Constant Battle


I consider myself a strong woman.  I am strong in my convictions and I have strength of character, spirit, mind and body. I honestly believe that if you have strength it is something admirable but I also think having a chronic illness makes strength a disadvantage.

Chronic illness has had its effects on me and as the fall and winter months approach, I know that I will not be moving like a “healthy” person for long.  I feel that I am physically strong considering all I do despite the pain that I move with daily.  And to the outside world, I look fine but I don’t always feel fine.

While I don’t have a handicap tag for my car, sometimes I feel like I probably need one but I feel the looks from people who don’t think I “look” sick discourage me from getting one.  I don’t blame them for that because looking in the mirror, I see the same thing.  But people don’t know or understand that I am in pain.  They don’t see it because I am not necessarily limping or hunched over or using an assistive device, but I am in pain and I am tired and I ache every day.  Between the pain from rheumatoid arthritis, fibromyalgia and pain from neck and back injuries from an auto accident, my pain levels are constantly changing.  Some days, I am at a 2 and other times, I am at a 10 but I am never not in pain.

I understand better than anyone that I am sick but I am strong enough to carry myself with a mindset that is resilient – both emotionally and physically. I am proud of myself for my strength and I am smart enough to know that also means taking care of myself.   Although, I find that the strength that I display strength can force others to see me as happy or healthy and that is not always the case. I struggle but I struggle mostly with showing that I am NOT struggling.  In all fairness, I don’t want people to feel sorry for me but I don’t necessarily think their perception of me and how I physically and emotionally feel is honest. People don’t ask how I feel, or how I am doing or if I need anything because they think I am handling myself just fine.  This is where my strength are to my determent. If anything, it can be frustrating scenario.

I am a self-sufficient person and sometimes I am fine but sometimes I want to be asked how I am doing or I want someone to offer to help.  I struggle because I don’t want to be seen as weak or a burden on anyway.  Most of time, people forget to ask if I need help because I appear so strong and I have no room to complain because it is mostly my fault.  I don’t like to ask for help and I hate not being strong.  On that hand, I don’t see needing help as weakness in people and I am always the first to jump to help others. I just need to stop telling myself that I can do it all and I need to stop seeing that my needing help is a weakness in me.

Strength is a constant battle for me.  It is a daily battle just to stay strong when it feels like your body is constantly rebelling against you. I am proud that I am strong and that I am independent but I just sometimes wish that people understand that my looking fine doesn’t mean I feel fine.

Posted in Chronic illnesses, Life in general, Tough Choices

I won’t tell anyone it gets easier


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I am going on five years since I was diagnosed.  For those of you have been following my blog for the past four plus years, you know that chronic illness and life have thrown me some major curveballs.  Some of life’s challenges had nothing to do with chronic illness and some of them did.

When I was first diagnosed, I wanted someone to tell me that things would get easier and no one would.  I didn’t realize that all these people were well meaning and they also didn’t know how to answer my questions.  The course of rheumatoid arthritis (RA) and fibromyalgia is different for everyone. In all honesty, I wish someone would have just said to me, “It likely won’t get better. It may get worse but it may not.”  However, I am pretty sure that this information wouldn’t have made a lot of sense five years ago but it would have given me some kind of measuring stick.

September marks five years since I was officially diagnosed with RA. I was not diagnosed with fibro until months later.  The first year to year and half were pretty bad for me as I learned to navigate my new life with chronic illness and pain. I remember some of my earliest posts and how they reflected what I was going through.  A post, in particular, stands. It is titled “My Life May Not Be Normal, But I make Lemonade Every Day.” It stands out because it reminds of a time where my RA wasn’t controlled and where I had not yet accepted RA as a part of my life.

Here are a few excerpts from that post:

“When I watch the world move hastily and with ease, it really gets me real emotional. I have forgotten what it is like to be healthy, and not in pain. Mornings are tough for me. I usually have not gotten to sleep until real late because of the pain and the sleep problems associated with fibromyalgia. I sometimes feel like both these conditions have dominated all my 33 and half years on this earth.”

“Some days it is better, some days worse. This morning it was very difficult getting my seat belt on because my hands hurt very badly. Driving to the daycare, I watch people walking and riding bikes and I know that these are things I cannot do. The pain is too bad. I look at my boys, ages 11 months and 9 years old, and I wish I could spend more time with them instead of being tired and in pain all the time.”

“For me, that life looks a movie that my DVD plays over and over as a constant reminder of who I used to be. I remember my nine year old when he used to tag along to the gym with me two years ago, and how he couldn’t get stay out of trouble. That me no longer exists, and it hurts more than the physical pain does. It is even painful to hold the baby. I am lucky to have my nine year who is the best big brother in the world. While I would I love to curl up in bed all day and hide under my covers…Before my diagnoses, I knew I would be successful at everything I did, but now I just want to make it through the day and provide for my family the best that I can.”

I look back at that post and I wonder how I made it through.  I know that living with RA and fibro doesn’t get easier. But it was a whole lot worse in August 2009 than it is now. While living with RA and chronic pain hasn’t gotten easier, I have gotten better at dealing with it.

The truth is living is the chronic pain and illness isn’t easy and it gets a whole lot harder as your disease progresses. What gets easy is how you deal with it. I have learned that I have so much to be grateful for despite chronic pain and illness.  I have learned that the best and worst are in my control.  See, I have a choice. I can either dwell on what’s happened or I can focus on keeping my symptoms at bay by taking my medications, watching my diet, and being active. Some days are harder than others but I am confident in my ability to keep moving forward and to keep fighting the fight.  However, I know better than to tell anyone that it gets easier.

Posted in Chronic illnesses, Life in general, Tough Choices

Keep Moving Forward


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People with chronic illness often use the words “keep pushing on” or “keep moving forward.” We use these words because we know that if don’t keep moving, our diseases will win.  I often wonder if when we say these words and practice them whether we actually believe them.   I am not sure that I always do.

The fact is, it is hard to keep moving forward, mentally and physically, when you are so tired. I am tired of being sick and I am tired of trying to juggle my health demands with my personal and professional lives.  I know that people who live with chronic illness get what I am saying but healthy people really do not.

When you are sick, being tired has a different meaning than it does when you are healthy.  When I was healthy, tired meant feeling exhausted because of school, work, or sleepless nights taking care of small children.  But now, being tired means being consumed with fatigue all the time.  I wake up exhausted and it does not matter how many hours I slept.  My body often feels like I am lugging around a really heavy box because I am so overextended. I am regularly tired to the point of tears because I cannot figure how to function with all the pain and fatigue.

I am emotionally and physically tired. I am tired to my core and to my very existence.  And I don’t know what to do. Simply saying “keep pushing on” or “keep moving forward” is a pretty difficult feat. Just thinking about all that life throws and then trying to juggle that with my health demands is awfully draining.

Showing progress is a relief and it makes moving forward easier. But the setbacks, they send me in the opposite direction. They make me even more worn-out and I am discouraged. How do I tell my family, my friends, my job, that I need a break?  There is no way to do that.  There is no time – life goes on even though I am sick. I still have to work, take care of my home and family, and I still have function just like a healthy individual even though I am not healthy.

In my mind, I know what to do: “keep pushing on” or “keep moving forward” – sounds simple to the average person.  I know this is what I am supposed to do and I have done it before.  I know that better days are ahead. Chronic illness is full of ups and downs – good and bad days.  I know all that. I also know that the solution is to keep moving forward and try to not let it all get to me.  Right now, it is quite hard before I am feeling defeated. I really am tired.

Posted in Chronic illnesses, Fibromyaloga, Life in general, Motherhood, rheumatoid arthritis, Tough Choices

I Strive for Normal


A few evenings ago, I stood in my kitchen making dinner when a rush of nausea and dizziness hit me.  I leaned on the counter for support.  I had stood too long and my body was rebelling. I left the hot kitchen and headed to my leaving room to sit down while the episode passed.  By the time I had sat down, I was sweating profusely.  I asked my 13 year old to grab an icepack from the freezer. I placed the icepack on my forehead and rested for a bit.

I finished making dinner and the rest of my evening was shot because I was too tired to do anything.  I even left the kitchen a mess until the following morning.  I was even too tired to ask my 13 year old to load the dishwasher.

Being in the kitchen and preparing meals used to be one of my favorite things. These days, my kids are lucky if they get one home cooked meal per week.  Usually, dinner consists of whatever is fast on most nights.  When I am able to prepare a home cooked meal that requires effort, I feel like I bring some normalcy back in our home. Or when I am able to keep up with the housework and laundry, it seems like my kids can have a normal mother.  Normal is what I strive for but it is not easy and it doesn’t always work in the way that I want it to.

Despite my RA and fibro being somewhat controlled, I have learned that normal is the exception to the rule.  When I try to make my life feel normal, I end up paying for it.  I am a busy working mother and I am raising two very active boys and sometimes, I can barely keep up with everything life throws at me.  Something as simple as preparing a meal should not be so hard but when you live with chronic illness, it is big feat.   It is as close to normal as I can get.

When a person is healthy, their life and identity is built around what they are able to do and how their body helps them do it.  When you are sick, you start to doubt yourself.  You want some control of your life and you keep striving to reestablish normalcy. After all, chronic illness changes what normal is and most of us don’t like the type of normal or the lack of normal it brings.

I am still striving for normal even through normal can be hard.  Normal is just the little things like preparing a meal that involves standing for long period without having to rest in the middle of it or after it.  Normal means that I can clean my home without having to rest every half hour.  Normal means that after doing laundry I can actually fold it and put it away.  Normal means that I can spend the day at a park or beach with my kids without the heat or cold getting to me.  Normal means that a long drive isn’t tiring.  Normal means that my kids get to feel what it is like to have a mother who can do so much more than I can do.  Normal means that I feel like I can do the things that others can do including creating a work-life balance despite living with chronic illness.

I strive for normal everyday and some days, it can be pretty hard. Other days, I get pretty close. And once in a while, I have a rare day where normal doesn’t wear me out and it allows me to feel like any other member of the human race. Normal isn’t my reality but I keep striving for days where it can be.