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.
I recently prepared an article about how chronic illness has changed me. I have written articles on various topics related to chronic illness including its role in the workplace, its effect on depression, exercise, sleep, dealing with flare-ups and relationships. I have even written about its effects on intimacy. While many of these topics have been hard, especially because of my own personal experience, I never imagined that writing about how chronic illness has changed me could be even harder. I found myself looking back at the person I was prior to rheumatoid arthritis and fibromyalgia and what I realized was that, I no longer knew that person.
Having to think about how much I have changed since chronic illness became a part of my life, I realize that being sick is hard work. Sometimes, I want to just jump on a podium to let the entire world know what it is like. Not only is it hard work, it is frustrating to live a life with constant pain, fatigue and just the not feeling good sensation.
I am doing the best I can
So yes, living with two chronic illness is hard work and I am doing the best that I can trying to maintain a balance between my life and the rest of the world. Healthy people have no clue what we go through. I am not sure what people see when they see me. You know the old saying, “But you don’t even look sick?” Either I am good at hiding it or I really make coping look easy.
I wouldn’t wish what I go through on a daily basis on my worst enemy. Although sometimes, I wish that people could walk in my shoes so that they could truly understand what I endure on a daily basis. Or perhaps someone could borrow my pain, sickness and fatigue for one day so I can feel what being healthy is like since it is something I barely remember.
When I am thinking rationally about living with chronic illness, I realize it is my burden to bear. Every single day with RA and fibro is trying on my body and taxing on my soul. I try to push aside what I am feeling so that I can function like a normal human being but no matter what I do, the pain, sick and fatigue manage to catch up with me. So yes, I am managing my health but it is hard work.
Sometimes, it is hard to keep going. It is no wonder I became depressed. When you are sick all the time, it is easy to lose sight of the big picture. It is hard to figure out what your abilities are and you lose confidence. Sometimes, it is in the day to day stuff and other times, you are forced to look back at the pile of missed opportunities. Missed opportunities are big and small – like missing your child’s match because you are too sick and tired to attend or giving up your dream to attend law school because it would be too much with all you already have on your plate.
Every day is a battle with fatigue and pain. You struggle with expectations from others – family, friends, employers and coworkers- but mostly, you struggle with the expectations you have for yourself. How come something as simple as keeping your small home clean is difficult when someone else – your own mother- has a bigger space they manage to keep clean? I think my biggest struggle is that I am still trying to be the person I was before I got sick and it is something that is difficult to do. There is no way I can ever be that person again.
Yes, it is hard work
There is no question that being chronically ill is one the hardest jobs you will ever have. Illness takes a great deal of time and energy from you and even out of your day. Meanwhile, you still have to tolerate it to function in a healthy world.
Incurable, invisible and even impossible – that is how I describe my life with RA and fibro. Living life with chronic illness also feels like a pretty demanding job. Every day brings with it new challenges and life doesn’t stop because I woke up with achy and stiff joints. Further, no two days are the same so you can’t even plan or prepare for the bad days.
Being sick has been my second job for the past five years. It is also the baggage that I carry around with me everywhere I go. It is a 24 hour, seven day a week, 365 days a year job.
But I find ways to cope and to better manage my life with a chronic illness. Every single day is a determined and strenuous effort on my part. Planning depends solely on the amount of energy I have and sometimes, even my best laid plans aren’t enough.
The truth is that I have good days, bad days, and downright ugly ones. There are days where my entire body is inflamed, I feel sick to my stomach and I just want to sleep. Sometimes, the sleep comes and sometimes, it doesn’t. Other days, the pain leaves me and I have what I call my good days. It takes a lot of effort on my part to have good days. I have to be careful what I eat, I cannot overdo things, and I have to keep moving. The pain is never completely gone but when it is at a minimal, I know that it will be back when I least expect it.
I am managing
If I am managing well, it is due to great effort on my part. Having good days is a hard work and so is dealing with the bad ones. I have learned that managing life with RA and fibro is like trying to steer a battered ship in uncharted waters. Every storm changes my direction and leaves me confused and lost and it takes a lot of effort to get back on course.
Life with RA and fibro is difficult but life is still good. I am coping despite the struggles that both diseases bring to my life. I have learned that even on my worst day, I am capable of greatness. After all, it takes a lot of a courage and determination to continue to steer a battered boat during a terrible storm. I am still going and as soon as the storm clears, I can assess my situation. It is too difficult to stop and assess things during a storm. All I can do is plan for the worst and pray for the best.
I have tweaked last year’s letter to my RA in the New Year.
Here we are headed into year five sharing the same body. Well, it is year five since I found out you were the one wreaking havoc on my immune system but it is much longer if you count the time you stalked me before. While I wish I could divorce you out of this bad marriage, it seems we were married under the Roman Catholic Church and I am stuck with you. No annulment because of the time frame and like my student loan debt, I am stuck with you for life.
Here is the thing: for 2013, I am ready to take putting up with you to a whole new level. Maybe you can go on a vacation for a while – somewhere freezing cold or scolding hot perhaps – a year maybe two while I enjoy remission. While you guaranteed I did not enjoy remission in 2012; I have accomplished more than I did in prior years. I made changes to my diet and I lost weight and I gave you more than you expected from me.
I did what I promised. I lost well over 30 pounds and I made healthy choices. You fought back with the nausea and hair loss so my hair did not have an opportunity to grow back. After all, you are the reason I have continued to use methotrexate and while it has helped some, it has not managed to keep you tamed. Meanwhile, my stylist, Peter, still misses me and I still miss him and I can’t see Peter if my hair refuses to grow and is falling out. You are still in the way of mine and Peter’s relationship and I need Peter to feel beautiful. Well played, but it doesn’t appear that you have won the entire battle because the weight loss and diet changes have made me feel prettier and happier and above all, they have kept you tamed.
By the way, you still are not reliable. See, all those family events I wanted to evade in 2012, you were quiet as a mouse and when I had an important work project or quality time event, you managed to do what you always do, keep me in bed. I spent most of the summer reeling from infections and flare ups. How can I be successful in my career and enjoy my personal relationships if you are always in my way with the brain fog, the forgetfulness, and the joint pain?
Despite your havoc to my body throughout 2012, I still won. You wanted to keep in bed and I did not give in. I fought you as much as you fought me. You kept trying to take away from me the things I cared about and I told you it really was not up to you. I fought back by making diet and lifestyle changes. I wanted to further my career and I wanted to spend time with my family and friends and sometimes, you did ruin my plans but you didn’t get to ruin my life like you had in prior years. I fought you so that I would remain a productive member of the human race and while you made my life difficult at times, I still won. Okay, so maybe you were kind and cut me some very minimal slack in 2012, so I am asking you do the same in 2013. No wait – I am demanding.
I am demanding for more mornings where I am not hunched over in pain and for you to allow me to be a fighter more often. I am demanding to have more days where I can feel beautiful and normal and just not sick. I don’t think that this is too much to ask considering you invited yourself in my life all those years ago. I have no plans to foreclose upon you, or have you arrested and I cannot really throw you off a tall building. The way I see it, you are just as stuck with me as I am stuck with you.
The fact is that I am not negotiating with you in 2013 nor am I begging. I am taking my life back because this life is no longer on your terms. The fact is you came into my life uninvited and yeah, I am still kind of bitter about that. Sore subject, but I cannot throw you out, I cannot pay you to move away and I sure as heck cannot send you to the Bermuda Triangle so my animosity is warranted.
In 2013, I am not asking you to behave, I am telling you to behave. If you want to be especially good, may, just maybe, you can offer me remission. You can also hold off on the dry skin and eyes thing. I have gotten used to paying an arm and a leg for eye drops and lotion so it does not bother me as much as you think. Now, I still struggle with the brain fog and the times were I want to say the right things and the words do not always come out of my mouth in the same way that I think them. Can you please chill out on messing with my brain so much? I am asking nicely and maybe you can offer more mornings without joint pain? I am going to keep eating healthy, taking my medications, and being active so you cannot have every one of my mornings but I will take more if you want to be generous. You won in 2012 with all those infections but in 2013, I am going to challenge you.
Last year, I wanted to be on better terms with you and I was willing to compromise but you kept fighting back every time you saw me getting better. So, there is no more nice gal from me. This is the way it is. The only thing I can offer you is that I am willing to accept that you are here to stay. I am willing to give into my pain and rest when things aren’t going well but I will continue to keep fighting so that my symptoms stay away. I am glad that we can be on common ground now even if it means we are rivals from this point forward.
These are my terms. Live with them or get out of my way!
The Boss of the Body with RA
Happy New Year Everyone! I hope you are all blessed with a happy, healthy and pain free 2013!
Despite dealing with a series of infections over the some months, my rheumatoid arthritis pain was, for the most part, staying away. With the weather cooling and with all the rain, it seems like my RA is back in full force. Anyone else feeling it? It is likely we will have a bad winter since last winter was so pleasant. If I had the money right about now, I would be driving down south so I could skip what havoc the damp and cold weather is about to bring to my life.
I have an appointment with my rheumatologist next month. I see her about four times a year. I was really excited to let her know that I was doing well with my pain symptoms. Unfortunately, I cannot share that information with her anymore because it is no longer true. The minute the cooler and damp weather came in, my symptoms came back. I have given in and turned on my heat because when I awake to a cold bedroom, it is harder for me to get up in the morning. I finally had developed a morning routine without pain or with minimal pain and now I am back to barely getting to work on time. The heat also poses an issue because I am back to dealing with dry eyes and skin.
I don’t really care what the researchers say about climate studies and arthritis. As arthritis patients, we all know that cold and damp weather affects us. In fact, there have been studies that show that people who live in warmer climates report fewer episodes of arthritis pain. With the weather cooling down again, I would like to place a personal phone to the Johns Hopkins research team and make myself available for any future studies on the correlation between weather and arthritis. Maybe if I am outspoken enough, something will change as far as the way the world views arthritis especially during the colder months when our arthritis symptoms are in full force.
Seriously, who left the door open just enough to let my RA slide right back into my life? I thought that letting it sleep in the doghouse all summer would continue on at least through the autumn months. Oddly enough, I am transferred back to a time four years ago when I learned that RA was my new reality. It was about this time that I was diagnosed. Obviously, I am not in as much pain as I was back then but I am in a lot more pain than I have been in a long time. I can feel the cold in my bones and it just isn’t fair. I have so much that I am busy with right now and I just want to be able to live my life.
I felt pretty depressed yesterday about the returning pain especially when it occurred to me that Spring was so far away. I got so used to getting up and going in the mornings that I forgot what that this was also part of my life. Yes, I was sick during the summer months but all that doesn’t compare to the returning pain and stiffness in the morning and throughout the day. I really truly did not miss this. I wish that I could just pick up and leave during the winter months or altogether but I can’t. Even if money was not an issue, I would still need to be here for my family. I did what I always do when I find myself depressed, I told myself to get over it. First, my family needs me and second, I don’t really have time to feel sorry for myself.
You know you wanted to tell me to get over it and move on so I did it for myself. After all, if I am busy feeling sorry for myself, who will pick up the slack? No one – the world does not stop because I want to have a lousy pity party. Besides (and I have said this before), pity is ugly on me.
The good news is that I have lost some weight in the past couple months. I have changed my eating habits, starting exercising and tried to reduce my stress (although that is not always easy). Despite the RA pain, it gives me a reason to feel happy. I also recently purchased a treadmill so the winter months do not stop me from exercising. I am praying that the pain does not either. Maybe I can visit my hairstylist, Peter, for a pick me up – that would definitely help my mood.
I hope everyone else’s RA is staying fairly quiet. I would not wish this remaining pain on my worst enemy. You know how we always say that if someone walked in our shoes, they could understand our pain? I am not sure if I would want anyone to feel this pain that I feel. I am not sure there is anyone I know that is strong enough to endure what I do. But I noted earlier, no pity parties for me. I will continue to keep the course and take the weight off. I will take my medications and discuss any returning symptoms with my doctor. I will also continue to live my life and fulfill my responsibilities despite my RA pain. After all, life is too short and no one knows that better than I do.
- When it comes down to it, we are all just getting by (livinglifewithraandfms.wordpress.com)
- Fall is in the air (livinglifewithraandfms.wordpress.com)
- Arthritis Diet Plans (answers.com)
- Coming Out To My Coworkers About RA (mlleaurore.wordpress.com)
No pictures, I promise
My health has not changed much since May with infections and flare ups left and right. This time, it is my big right toe. I injured it simple as that but in my case, it is not that simple. The injury was five days ago and five days ago, the toe is still swollen. I went into urgent care on Friday and as usual, my blood pressure was elevated but that is an entirely different story and I will get to that eventually.
At urgent care, the nurses take turns telling me it looks like gout and I am saying “No. No, I think I injured it.” The truth is that I am such a klutz that I don’t keep track of all my injuries. I probably should start taking notes so that I can properly answer the doctors/nurses’ questions. Anyway, back to the story of my poor toe which had ballooned to the size of a golf ball. It was so bad I could barely put my tennis shoes on and take them off. I did not want to wear open sandals because the sight of my toe was really ugly. I wore tennis shoes to work and I had to explain myself and that is another thing that deterred me.
Back to the urgent care part of the story. At first glance, the doctor also thought it was gout. However, once he examined at, he told me it was infected and even gave the infection some fancy name that I don’t recall – starts with a “P”. Apparently, when I bumped it, I lost part of the nail and there was an open cut and that led to the infection. Well I take that back, the Humira led to the infection because it suppressed my immune system.
In the worlds of the urgent care doctor, “We see this in elderly patients,” (I had to chuckle) “and people with compromised and suppressed immune systems.” (Bingo!) Well, actually is it too late to ask for the gout diagnosis. I will take “gout” for 100, Alex! I have had it with the infections. I went through this before I was diagnosed with RA but this is getting ridiculous. I did so well for such a long time and I hate that things are going as they are now.
With a wrapped up toe, a prescription for antibiotics and my dignity still intact, I headed home and laughed and cried about dumb fate. I spend most of the weekend tending to my big toe and dragging my foot around because the pain radiating into my foot. I have been a good girl and followed the doctor’s instructions but my toe is still swollen and painful. This autoimmune stuff is really getting on my last nerve and I just wish I could be healthy or normal or whatever people who are not sick are.
And no pictures of the toe for you. I am disgusted just looking at it. It is not wrapped up today because I would not have been able to put a shoe on if it was. I also thought about tennis shoes but I didn’t want to explain myself again. At least, my shoes can be off under my desk and they are slip-offs. I am wearing nylons so I don’t know what the toe looks like after being stuffed in a shoe whenever I am away from my desk but hopefully, it will not be too bad by evening and I can ice it when I get home. I want to say I am done venting but I am not.
Do I Really Have Time?
The reason I go to urgent care instead of my doctor is because I have not seen my primary care doctor in a long time. If I tell you how long, you will lecture me so that is how long. I have thought about making the doctor who treated me for the medical part of my auto accident my primary but like everything else in my life, it keeps getting put off. The fact is between my RA and fibro appointments and everything else that entails my life, I don’t really have time to spend any more time at the doctor. My back and neck pain have come so it is back to the chiropractic doctor once a week and in this case, I don’t have a choice. I suppose that is where the blood pressure issue comes in. Since that accident last year, my blood pressure seems to stay high.
Blood pressure and pain – it is like a couple of opposites who do not belong together. I do not care what anyone tells you – opposites do not attract and when they do there is a whole lot of conflict. My health is at stake here and I cannot call and make the time to see a primary care doctor. That is why when stuff happens, I visit urgent care. Of course, I am smart when comes to kids but I wish to God I was smart enough to prioritize my health. It really comes down to how much you can actually prioritize. I already take enough time off to go to the rheumatologist, to other appointments, to be home sick, to take care of my kids when they are sick, and also to take my kids to their appointments. It is hard being a working mom in the 21st century. The whole idea of the working mom is overrated. Women entered the workforce but their lives outside the workforce never changed. That is vent number – I don’t know what number I am up to.
Changes are coming but rather slowly
I mentioned in my last post that a major change is coming into my life and it is one that I did not see coming. However, there are some hiccups in the road right now and I am working on making sure that this happens and I am making plans towards it as well. To tell you the truth, I am a bit scared. And there is always the possibility that it may not happen but like I said, I am going to do everything in my power to make sure it happens. I am happy and sad at the same time. I am happy that it is happening but I am sad that it took this long. I am also sad about how much the time was lost. I am also really excited and nervous at the same time. In the end, it is what is best for my children and me.
I have had my failures and near misses in my life. I have fallen down more times than I care to count but I have also gotten up. These upcoming changes mean I am getting up again. They mean that I refuse to stay down even in the most adverse situations. Yes, this situation also means that other things in my life will change as well but I am willing to take that risk. I am willing to do what I need to do to be the best at who I am in. I will tell you about it soon enough and trust me, it is worth the cliffhanger. Anyway, I just know that I have been prepared for this for a very long time and that is why I know I am making the right choice here.
When you suffer from/live with a chronic illness, “why me?” is a question you ask often. Being sick is a personal thing especially when it feels like you are being punished. If we feel pain and we feel as if we are suffering, then we ask this question. We don’t ask it when good things happen. Could you imagine saying, “why me?” when it comes to happy events in your life? With illness and suffering, we have this tendency to believe that we did something to bring it upon our suffering. Additionally, we want an explanation for our pain and suffering and what we believe (mentally and spiritually) determines the extent of that suffering.
When I was about nine years old, my mom was walking and was hit by a car. The next six months to a year of our lives involved watching her struggle to regain control of her body and there were times where it took its toll on her. As a kid, I never understood the extent that her pain had on us. She struggled but she still managed to take care of us, spend time with us, make us meals, clean our home, etc. She did all these things despite her own ordeal but we still saw the toll it took on her. I wonder if she ever asked “why me?” Perhaps, she didn’t or perhaps, I wasn’t listening when she did. And if she did, was she ever able to answer that question? As an adult, I can recall her pain but as a child, I do not recalling asking “why my mom?”
When I was diagnosed I wanted to believe I would protect my children from ever knowing the extent of my pain as live with and deal with rheumatoid arthritis and fibromyalgia. Four years later and after a whole lot of soul searching, I know that I cannot even get close to hiding the extent of my suffering from my children. Just like my mother was not able to hide it all those years ago, I am not able to now. However, I just hope my children do not realize my ordeal until they are adults themselves or hopefully, they never do.
Trying to find out the “why me?” answer is a never ending quest as I have learned. We can blame stress, genetics, lifestyle, or even God as we try to determine why it is we are suffering. On our own, we must realize that that our suffering has nothing to do us or anything we have done. It has to do with being human and with being alive. To be alive means that we can feel something even if it is pain and suffering. Suffering offers no discrimination – it does not care about sex, race, religion, age, etc. No one is spared or favored. There is nothing any can do to avoid suffering and the only way to live life despite that is change our beliefs and the questions we are asking.
To lessen our painful circumstances, we need to stop asking “why me?” as if it is some personal vendetta. The universe has not picked you to suffer and when it comes down to it, you suffer by your own choosing if you so please. Chronic illness and pain has nothing against us specifically and unless we escape that mindset, we will never be able to manage our diseases successfully.
Think about the loss of a loved one. Death never makes sense so for anyone of us to try to make sense of why someone died or suffered only prolongs the grieving process. That is not to say that it isn’t necessary. Asking questions allow us to deal with the blows we have been dealt. However, if it goes on longer than it should, it does not allow us to accept those circumstances. Changing our questions means we change our experiences and beliefs about suffering. So stop asking “why me?” and start asking “what can I do to make this a better experience?”
As many of us are aware, we are presented with a big task after we are diagnosed – bringing back meaning to our lives, lives that have been altered by chronic illness. It is a grieving process and dealing successfully is critical. We cannot respond positively if we are still asking “why me?” You can wrestle with your thoughts all day or you can find ways to busy your thoughts. Pay attention to what you are telling yourself and ask yourself if you are hindering yourself from living positively. Being aware of our circumstances and our suffering allows us to stop asking why and to move toward making the necessary changes to our lives. Once the negative self-talk stops and you stop asking why, you will realize that the “why” isn’t as important as the “what now?”
- No plan is perfect (livinglifewithraandfms.wordpress.com)
- Chronic Illness Tip: Pick your support system carefully (theadventuresofarthritisnfibromyalgia.wordpress.com)
- How Does Chronic Illness Define You? (livinglifewithraandfms.wordpress.com)
I have to say that I spent a lot of time muddling through a life with rheumatoid arthritis and fibromyalgia. Next month, it will be four years since I was diagnosed with RA. Interestingly enough, my son will also be four. For those of you who do not know, I was diagnosed shortly after E was both. A few days after having my son, I awoke to the inability to walk or use my hands. My entire body was swelled and my fingers were curled up into fists. Needless to say, it was a very scary experience. I went to the doctor hoping my family doctor would prescribe something to make things better. It was not until I heard her utter the words “rheumatoid arthritis” that I knew my life was about to change.
I was 32 was I was diagnosed and RA made me feel like I was 80. I felt like I was handed a death sentence because all the information on the internet made it seem as such. I did the only I could do given the emotional and physical setbacks I was experiences. I called my sister and I told her that I needed her. She stayed with me for a little over two months. If not for her support, I am sure how I would have gotten through the worst two months of my life. That flare-up eventually subsided and under the care of a rheumatologist, I was able to return to work. As I reread that line, it sounds as if it were easy or simple, the truth is it wasn’t. However, I choose not to look backwards because it keeps me from focusing on the future.
People look at me and assume because I advocate for arthritis and fibromyalgia and because I am knowledgeable about the two, that I have my act together. If anything, that is far from the truth. Sure I know a lot and heck, I even make plans but the truth is that no plan is perfect. I can plan and plan all I want but the fact is my life is busy and I live with two chronic illnesses. I don’t always take my medications on time and sometimes I forget to take them all together, I don’t always eat healthy, I am not as active as I should be, I don’t always avoid stress, and I don’t always get enough sleep. The fact is – I am just getting by.
I have made plans and decisions about how to best manage my health and for the most part, I do stick to the plan. For example, I make healthy food choices daily but sometimes, I don’t always have the energy to prepare meals so I order out and try to make the choice as healthy as I possibly can. Sometimes, I am too busy to incorporate exercise in my busy day but I keep moving and I hope that I am active enough. I sometimes forget to take my medications but I take them the moment I remember to. As far as stress, avoiding it isn’t easy so I have trained myself to calm down – sometimes with deep breathing, sometimes by walking away for a short time and sometimes, I seek guidance through prayer. I don’t always get enough sleep so I try to lie down or take a nap during the day. I know and understand that my best laid plans can fall though and I have learned to be okay with that.
As I get close to the fourth anniversary of my rheumatoid arthritis diagnosis, I know that I reached a level of acceptance that surpasses anything I could have imagined four years ago. I get that I am not healthy and that chronic illness is a part of my life and sometimes, I still struggle with the emotional ramifications but overall, I know that I can still live my life despite chronic illness. Of course, there will be days where I will be fumbling along but there will also be days where I feel like an expert in living successfully with RA.
I don’t think any of us really have a perfect plan in place. I think in the beginning we want to believe that we can set up a management plan that if we follow through flawlessly, we will magically live symptom free and pain free. We want to believe that the perfect plan will lead us to remission. Sure in the beginning, we follow it without slipping but after a while, it just feels like we are so focused on dealing with our conditions that we have forgotten how to live our lives.
My experience has taught me that living with chronic illness is about trial and error. You figure it out one day at time and you accept that no plan is perfect. You can try hard to eat right, exercise, take your medications, not stress and sleep well and still things can go wrong. It really comes down to how you respond to the setbacks that makes living with disease successful. For me, it is about getting up even when it feels like I have nothing left in me. Sometimes, the motivation kicks in right away but other times, I need time to pull myself together before I can move forward. I don’t consider myself an expert on living with chronic illness but I do believe I have become somewhat of an expert on living with me. And it only took nearly 37 years to figure that out!
- How Does Chronic Illness Define You? (livinglifewithraandfms.wordpress.com)
- I Miss Me, Too (livinglifewithraandfms.wordpress.com)
- It is not all bad (livinglifewithraandfms.wordpress.com)
- When God Gives You More Than You Can Handle (chronicillnesspaindevotionals.wordpress.com)
- Positive thinking helpful in coping with, but perhaps not banishing, chronic illness (drbradshook.com)
For those of us living with chronic conditions, we have been faced with good and bad things that happen. For example, chronic pain is one of those bad things. However, in my experience, it isn’t all bad. I have had some really bad periods where I long for the “me” that I was before RA and fibromyalgia came into my life. I actually went through one of those bad periods recently and I have only recently gotten out of the worst of it. It started back in late May and it seemed like there was no end in sight. It was flare up after flare up, infection after infection, and just being sick over all. It was both a physical and an emotional setback for me. I found myself struggling with the return of my symptoms and at times, I felt emotionally challenged. It was anger and sadness as I dealt with some really bad days there.
Suffice to say, I am back among the normal people – well my kind of normal. No insult intended but among my fellow chronic illness sufferers on a good day. There were days in the past couple months that I wondered with all the sick time I took whether I should continue working. I found myself questioning myself and my abilities. I kept reminding myself that just because I am chronically ill doesn’t mean that I am not smart at or able to do my job. It is hard to believe that when my career path has suffered as a result of my chronic illness. I keep telling myself that I will have time to climb the career ladder when my kids are older but the fact is, my parenting isn’t what is hindering me. What is hindering me is my ability to be in a position where my employer knows I am chronically ill. I use my personal and vacation times to deal with my illness and my many responsibilities but employers somehow expect you to use all your time at once rather than sporadically. I wonder if anyone else deals with this issue.
This morning was a dry eye morning and my eyes can get pretty dry. Sometimes, it is so bad I can barely open them to be fully awake. It usually involves expensive eye drops and exposure to light to get them ready for the morning drive. I was grumpy as a result but I began to ponder about whether living with RA and fibromyalgia is really as bad as it feels in the morning or during a bad flare period.
I know without a doubt that RA and fibro changed not only changed me physically but they also changed me mentally and emotionally. I am definitely a different person, with different ethics and different morals, compared to the person I was before RA and fibro came into my life. Having RA and fibro has allowed me to gain empathy and kindness, and a stronger belief in the Almighty. They have forced me to stop and smell the roses and not to take life so seriously. As many of you know, I had to make career changes to accommodate RA and fibro into my life. I ended up not going to law school and leaving a high paying and stress filled job. I ended obtaining on a master’s in legal studies online and taking a lower paying position that involves less stress in order to keep my peace of mind. Physically, I feel like a crappy version of myself but mentally and emotionally, I feel like an all-round better person. And that is the trade off and I am okay with it. I really am.
I know what are thinking – someone else wrote the title for this post. No, it was me. I cannot describe what I am feeling in any other way. At first, I was thinking “swollen giant,” but I am five foot, 4 inches so that would not really describe me with my symptoms. June has been that kind of month. The first part of the month it was a flare up, then sinus and ear infections and a urinary tract infection because the joint pain simply wasn’t enough. What the heck is going on with me? I have done pretty well for nearly a year and now it is like coming on full force.
While I am not playing the “why me” card, I not thrilled with feeling like a swollen blob. The reason for all the joint pain is because I was on antibiotics and that meant no Humira. My ankles and knees look like tennis balls and I feel like a really old lady after sitting down for too long. Despite, I am tolerating and I am not letting the pain and all the other issues get to me. I am not sure if it is because the pain is not extreme or if it is because I have gotten stronger at dealing with the pain, but whatever it is, I am holding my own. But — I still feel like a swollen blob of something or the other. The truth is, they cannot be all good days.
I have learned so many valuable lessons in the past few years and as a result, I know that life is too short. We have to make the best of what we are given and not dwell so much about the things we cannot control. While this month has been pretty tough as far as my health goes, I know that I am going to be okay and that this is merely a setback in my chronic illness journey. The infections and joint pain are all RA related and I know that and I understand that better days are ahead. I have always made the choice to see the glass as half full and not half empty and I plan to continue to do so.
Many of you have been loyal to my blog for a quite some time and I am grateful for your loyalty. In this time, you have seen through tough times and through good times. September marks four years since my RA diagnosis was confirmed and January marks four years since my fibromyalgia diagnosis was confirmed. In four years, I have evolved in more ways than I ever imagined myself evolving. The weird thing about it all is that looking back, I wasn’t proud of the person I was before. Sure, I miss being more active and not having to deal with pain and fatigue but the person I was before mentally isn’t someone I would be proud of. I am proud of the person I am today and everyday I find more reason to be proud of that person.
Despite the recent disease setbacks, life’s good and I hope that it continues that way. If you recall, I had only two resolutions this year – one to get closer to God and the other to focus on my advocacy work. I have worked on both of things and both of these things have allowed me to grow both mentally and emotionally. I have learned to put my faith in the Almighty and to turn to prayer during tough times. As far as my advocacy work, I am very proud of it and I working towards make it part of my professional life.
Okay so I still feel like a swollen blob between the joint pain, side effects from antibiotics and back to back infections but I am so grateful when I wake up every morning. I am blessed with an amazing family, great kids whose love makes me whole, work that I enjoy doing, faith in the Almighty and so much more that I find myself grateful for daily. For me, a day that the sun is shining is a reminder that my life is more than I ever expected. RA and fibro flare-ups – they are nothing but small setbacks. This swollen blob has plenty more victories ahead.
It feels like that monster truck ran me over in my sleep last night. Every joint in my body aches and in particular my feet. It does not help that my doctor told me to discontinue Humira until my antibiotics are all taken. I am being patient and my patience is a reminder of how much I have evolved emotionally over the past few years since my diagnoses. In September, it will be four years since my RA diagnosis and in January, it will be four years since my fibromyalgia diagnosis. (Although, I have had symptoms from both conditions since my teen years.)
Despite my RA and fibro moderately controlled, I still wake up to pain on most mornings. Sometimes, I do not realize this right away but once my feet touch the ground, that monster truck that ran me over in my sleep shows what the damage it has done to my body. As far as I know, I don’t have joint damage – at least not anything that my doctor and I are aware of. After my auto accident last year, my x-rays showed arthritis in my neck and aside from that, another x-rays are over two years ago and those did not show any notable joint damage. Aside from the fact I am in pain, my joint and muscles haven’t really changed. My body has though. I have put on a lot of weight from medication and not being able to be as active as I used to be. I still get comments from people who insist that I have RA because of my weight and they are shocked when I explain, the weight gain happened after the RA diagnosis. Whatever! People are idiots.
I often struggle with my hands and sometimes, I struggle to type. This is really hard for me because I don’t want RA to take away my ability to be a productive employee. My hands also have a way of giving out on me. I drop things and I cannot manage tasks that require hand and finger coordination. My ankles have been swollen for so many months and I cannot imagine waking up without them being swollen. My RA is getting worse and there is not a thing I can do about it. I had some really good months there and last year was great as far as my RA pain was concerned but this year thus far has been particularly difficult. I did have a good run there though and then the monster truck came back every morning and I wish I would take a vacation or something. The only vacation it has taken is a staycation and that doesn’t work for me.
There was a time when I had dreams about being healthy. I used have these dreams where I would run and play with my kids or where I would look in the mirror and say to myself that because I didn’t have RA pain, I didn’t need meds that make me gain weight and was able to be active again so the weight gain was no longer an issue. The longer I live with reality, however, the more I understand that RA and fibromyalgia are here to stay. I am no longer disappointed that I did not go into remission. However, a small part of me still wishes for this but I won’t be disappointed if it never happened. That monster truck is a part of my reality every single day and while I wish that I can have it towed, I am not sure that it is going to happen any time soon.
Having lived with RA and fibro and knowing so many others struggling with these and other chronic pain conditions, we are a strong group of people. Living with chronic pain on a daily basis, I would not be able to do anything without strong effort and faith. I know that things could be a lot worse but for might now, I am that I am still working and I am still taking care of my family and I am very grateful for that.
People in my life including coworkers, friends and family, have this notion that if I am moving, I am not in pain. The reality is if I stayed in bed when I was in pain, I would never leave my bed. I cannot let that monster truck win and for me; a day that I can get out of bed despite the pain is a good day. After all, I am still a productive member of the human race.
My mornings are interesting to say the least. Upon awaking, after hitting the snooze button multiple times, my feet and ankles are stiff and swollen. My walk/limp is the bathroom rather graceful to say the least. I know from the moment my feet hit the ground that the monster truck visited me in my sleep. Some nights, that truck continually runs me over and doesn’t allow me to get any quality sleep. It takes me a lot of pacing to get ready because mornings are pretty bad for me. In addition to my own morning routine, I have to help a three year old get ready and nag a 12 year old to get moving.
Every morning that monster truck looks me in the face and reminds how little control I have over chronic pain. Despite knowing that, I don’t dwell because I know that it takes a lot of strength and courage to face a life with a chronic pain. I know that my kids look to me for answers and they want to see safety and protection in my eyes. They need to see that success is possible despite obstacles. For the people that know me, they see chronic pain because it is written all over my face and they don’t quite understand how I manage to do all the things I do despite chronic pain. I used to believe that before RA and fibro I was strong but now I know that I am stronger than I have ever been despite and because of RA and fibro.
I think that life does go on despite my tainted relationship with that monster truck. Every day, I learn to that as long as I can tolerate the pain, I am functioning and I am able to handle the challenges that come my way. Every day that I do not let that monster truck hold me hostage in my bed is another day that I am ahead. I have good days and I have bad days. As each day progresses, I am thankful for all I have accomplished despite the reality of that monster truck in my life.
My relationship with my monster truck is a walk in progress. In the past, I spent so much time trying to outrun the monster truck and in doing so, I allowed it to consume me physically and emotionally. I have learned that the only way I can win the fight is to accept my limitations and pain but that doesn’t mean that I don’t continue to be active and try to at least run side by side with the monster truck. It is likely is will outrun me but it is better than getting run over.
One of things that always stands out when I read other blogs and even my own posts is this idea of trying to be normal as we struggle with chronic illnesses. After the past few years since my diagnosis, so much has changed in my life, my career, my health, my personal relationships and even the loss of my brother. Some of those changes were due to RA and fibro and others due to circumstances beyond anyone’s control. Some of the changes came after I made the choice that even though I had to live with RA and Fibromyalgia, I didn’t have to let them take everything from me. I changed careers and dreams, I let go of people in my life who made a choice not to be there for me, I learned a lot about myself, and I found myself taking on opportunities that I never imagined taking. I evolved after I was diagnosed and in a way, I found my new normal.
People with chronic illness often use the words “somewhat normal” or “semi normal,” but I never have. Living with RA and fibro has given me a new kind of normal. Like all of you, I know the battle scars that chronic illness leaves on your heart and your soul. The way you look at life changes and if you are not careful, you will lose track of all the things in your life that are wonderful and good despite chronic illness.
Chronic illness becomes this imaginary wall between you and the people in your life that don’t understand. But the thing is, there are people who actually take the time to care and the effort to understand because of their love for you. On the other hand, relationships, marriages and friendships might end because of chronic illness and in my experience; I have learned that those things are okay because they teach you who and what is most important in your life. Other things such as regret because you can no longer do things you once enjoyed and anger because you have to adjust to a new lifestyle are all things that are a part of living with chronic illness. Anger, regret and depression, if you allow them, will eat at psyche. If you let this happen, you will isolate yourself from the people that love you.
So how does one keep up the fight and persevere? You do that by creating a new kind of normal. That normal means that you decide to control what you can and focus less on what you cannot. Your new normal also means that you take responsibility to not shut people that love you out and to not discriminate if they do not understand your pain. Your new normal accepts that while there is a stigma associated with chronic illness, you can still take a firm stand and acknowledge that you are not crazy, or a hypochondriac or simply seeking attention. In doing so, you do not let the ignorance of others affect how you live your life and work towards your dreams.
Four years now since my diagnoses, my normal is anything but normal and I am okay with that. I don’t take crap from anyone, I continue to live my life despite these diseases, and I stick to my normal. My normal allows me to wake up every morning knowing that today will be good if I make a choice to allow it to be. I am not depressed or angry. I don’t have regrets over things out of my control and I focus on the ones that I can. I am content with my normal and I think that it is so important for each person to find theirs and to be content with that.
This past weekend I found myself struggling with a very painful and exhausting flare-up. It has been quite some time since I have encountered a flare this bad so if anything, it was long overdue. The extreme exhaustion kept me in bed for two days. Drifting in and out of sleep, I wanted to write down what I was feeling down mostly because I knew that if I did I would feel less depressed but I was too tired and too weak to even check emails.
I am not sure what I did differently to ignite this flare. I was trying to figure out if I made a bad food choice, if I had gotten enough sleep or if I was unusually stressed. I wanted to pin point what caused the flare so that I would learn from experience. I also wanted to track my progress during the flare so I can try different options the next time a flare came along. However, I was not able to that because I good barely stay awake long enough to think about it. A part of me was too busy giving into the flare to recognize what I was doing wrong. All I can tell you is that it was a rollercoaster of pain, fatigue and depressed emotions.
During this experience, I did make a mental note of the things that stood out for me. The first day, I just felt like I couldn’t get comfortable and I didn’t want to be touched. Even my sheets touching my skin made me nervous. By the time evening rolled around, I was just felt like I was coming down with something. I became extremely exhausted and couldn’t fall asleep. By the time the weekend rolled around, every joint in my body was inflamed, I was extremely exhausted to the point where I couldn’t even stay awake, and had a fever and chills. If not for the joint pain, I would have thought I had the flu.
Between the pain and fatigue, the depression was evident. At first, I started to feel sad but by the time the worst of the flare came, I felt defeated. Here is the thing, I can say over and over that I will not let the flare win but it always does. I can take try to take lessons from the last flare and try to make things better the next time around but it seems every flare is different so coping becomes hard and even my best laid plans fail.
By the time I realized what was happening, the flare had reached its peak with all the different types of pain you can think of: stabbing, burning, aching, etc. My muscles and my joints seemed to be equally affected. The extreme exhaustion would put me to sleep easily but the pain would wake me up. I got to the point where I only got up to use the bathroom because the pain and fatigue were too much to tolerate. To make things worse, my whole body was under attack. My eyes were extremely dry and blurry, my face was sore and sagging and even my gums and teeth hurt.
I eventually found relief as the flare subsided. I swear it was like going through a dark tunnel feeling tired, weary and hungry. It was not until I saw the light at the end of the tunnel that I realized I was getting better. The pain subsided, the swelling decreased and I had more energy. I still have a lot of pain (stabbing pain) and stiffness in my joints, especially my hands, wrists, feet and ankles. What is interesting to note is that the flare started to subside, it was like had a burst of energy but I am still feeling a bit tired. I erred on the side of caution with the energy burst because I was afraid to repeat the entire process. I am also still aching but the worst of the flare is gone.
All these years living with rheumatoid arthritis, you would think I would learn from experience but I really have not. This flare was one of the worst I have had since the first year I was diagnosed so I am still reeling from it. My hands still hurt as do my feet and ankles. It hurt to put my seatbelt on this morning and it has been a very long time since I have had any major issues with my hands. I am slowly but surely getting back to some kind of normal. Have I learned from this experience? I hope but I won’t know how much until the next flare comes around.