Wheelchair Antics

I recently found out on a recent survey from rheumatoidarthritis.net, that about 30% of patients with Rheumatoid Arthritis feel embarrassed about having RA. I found this quite shocking since we have no control over being healthy or not. Furthermore it made me reflect about how RA has affected me. I asked myself if I’ve ever felt embarrassed about it. The only time in my life I’ve ever felt ashamed was in my early 20s. I was confined to a wheelchair for about a year and a half. I had accepted the fact that due to this affliction, a wheelchair would be the best method and mode for me to establish some sort of control and independence from it. I was not going to let RA get the best of me and limit my enjoyment of my life. I used that wheelchair to go and enjoy those moments that any person in their early 20s should experience. However, as with any type of medical mobility device, one immediately becomes the focus of attention. I wondered if people would feel the need to ask “what happened?” Or go out of their way to assist me or would they completely ignore me. These were just a few of many questions and thoughts that raced through my mind. The more I found myself dwelling on other’s thoughts and opinions, the more embarrassed I became.

When I was 22, I had no more cartilage in my knees, and after a while I could no longer walk, so I was in a wheelchair for quite some time after that. Wherever I went people stared at me. I don’t mind people staring, I’m a fun-loving person, and I don’t mind getting people’s attention when I’m trying to be funny or silly, but the looks on their faces was that of pity and I do not particularly like people taking pity on me. I had done so much more than most of those people had done by the time they were my age that I took offense to them feeling sorry for me. It was embarrassing for me to go out in public knowing everywhere I went people stared at me with pity. I know sometimes we all feel like everyone’s staring at us and it’s just our imagination, but I’m serious, we lived in a relatively small city where a young girl in a wheel chair is not too common a sight.

This went on for a while, but I couldn’t just stay locked up at home, so I had to face my fears, and just deal with it. So when my dad asked me if I wanted to go to lunch with him at a fast food joint that I really liked, I decided to go with him. The moment we went in, I could see everyone staring at me, and I’d stare back, but they would just look away and then look at me again when I stopped giving them the evil eye. It was quite exhausting. The whole time we were in the restaurant I kept thinking, if only these people knew I’m actually a very happy person who enjoys life they would stop looking at me with pity… and then it hit me… I had to make them see me the way I am and forget about the wheelchair.

I figured if they were going to stare anyway, might as well give them a reason for staring. As soon as we ordered our food, dad took me to our table. He asked what I wanted to drink, got up from the table to go get our drinks and the moment he started walking away I yelled at him “You better not ditch me here like you did last time!!” My poor dad!! The look on his face was priceless! He’s a very calm, serious man who doesn’t particularly like to cause scenes, he walked super fast back to the table and sat down with me giving me this look of “What in the world are you doing?” It was hilarious! I couldn’t stop laughing. I apologized but still couldn’t stop laughing, all of a sudden everyone in the restaurant was laughing too. My dad was able to go get us our drinks, and after all the laughter everyone stopped staring at me, and when they would look my way, there was not a hint of pity in their faces.

After that day, I’ve had many people look at me with pity again, but it doesn’t bother me anymore because I know who I am and all that I’ve accomplished and I’ve done that in spite of everything that RA has thrown my way. So people can feel however they’d like about me, it doesn’t affect who I am or what I think about myself. You can’t always make a scene in a public place to get people to see you the way you truly are, but you can always decide for yourself how you’re going to feel about people staring, or what people say or do around you.

I was able to get past my insecurities and was able to regain my independence and mobility.

Now, I’m never embarrassed for being sick or having certain limitations. Sometimes I feel irrationally guilty about it, but not really embarrassed. I’ve come to realize that embarrassment doesn’t just come from you, but from what YOU think or feel others think of you. Now, normally you can’t change how people (in my case, strangers) think or feel about you, but you can always change how you feel about it.


Running low on battery

One of the main symptoms that I’ve encountered with Rheumatoid Arthritis is fatigue. The level of fatigue has varied throughout the years, but it has always been there. At first, I thought the fatigue was a side effect of my medication (which, in some cases, it is) but as my medication changed throughout the years, I realized the fatigue was always present, no matter what medication I was in. Because of this fatigue that just feels eternal, I’ve figured out some shortcuts so I can get on with my daily life; and am now able (most days) to do everything I need to accomplish in a day.

The first thing I learned, I learned the hard way; just because I have enough energy to keep going right now, doesn’t mean I should keep on going full throttle. Why? After whatever it is I’m doing right now, I still have things I need to do later, and if I use up all my energy on the first task, the rest of the day I’ll be too exhausted to do anything else. I actually learned this taking a walk. Halfway through my walk, I started getting tired; but I knew I had enough energy to keep going, so I decided to push myself and keep going. I made it to the place I was going; but I had no remaining energy to get back to where I started. I had to ask my cousin (who was walking with me) to send someone to go pick me up, which made me sad instead of empowered by my walk. That day I learned that my body has a certain amount of energy to give me, it’s not anything close to what a healthy person has, but it’s what I have to work with, so I need to manage my energy in a way that works for me and my lifestyle.

Another thing that has greatly helped (but I must confess, I don’t actually do anymore) is exercise. Since I was diagnosed, everyone always told me I should exercise and do my therapy… but I felt SOOO TIRED! They said exercise would help with the fatigue, but that didn’t make much sense to an exhausted teenager. About 4 years ago, my girlfriends and I decided to go to Vegas for my birthday and I decided I was going to get fit enough to be able to walk as much as I needed to in Vegas, and I was going to look good doing it. I joined a gym, got a trainer who knew I had RA and did research on what I could and couldn’t do. I always left the exercise until after work, so whatever energy I had left in the day was all going into exercising, but I quickly figured out that I was having more and more energy everyday. I felt better, stronger and more energized than I had in years.

After the gym, I didn’t go back to my original weight, but I was still at an average weight for my age and height. I’ve never had a real weight problem, but when I started taking prednisone, I gained 20 pounds in 3 months, and I noticed a change in how much energy it took me to get from point A to point B. Not only is maintaining a healthy weight excellent for keeping your energy levels higher, but it will help keep all that extra weight off of your joints and keep them healthier longer.

Something that I’ve suffered through pretty much since I can remember is insomnia. Not getting enough sleep is terrible for anyone, and for someone with chronic fatigue is even worse. Some people don’t have insomnia, but do have problems getting enough sleep either because they have too many things to do, or too many things to think about; this is counterproductive… The next day you won’t have the energy to finish what you started the day before or do what you were up all night thinking about. Get your 8 hours of sleep, and take some breaks throughout the day.

Cut yourself some slack, you’re not superman. For me, showering is very exhausting, so after I shower, I lay down for about 30 minutes; I don’t sleep, I use the time to go online, or read a book for enough time for my body to recover from exhaustion. After this 30 minute break, I feel re-energized and can keep going on with my day without feeling extremely tired. The way I see it is, if my phone is running out of battery, I charge it; I don’t expect it to keep working for hours and hours on 5% battery… why expect my body to get through an entire day on 5% energy?

On the other hand, there’s also the problem of sleeping too much, or simply not wanting to do anything. These are usually signs of depression, if you’re depressed, get help. Whether it is in a support group, talking to friends, with medication, or talking to a counselor. Depression causes even more fatigue and pain than what you normally would have with RA and the medication side effects alone. You don’t want to just “suck it up,” talk to someone who can help you through it, and get supportive friends and family to try to help motivate you to get out of bed.

Talk to your doctor, some medication for RA actually helps with fatigue. Some 9 years ago, or so I started taking Remicade, now I don’t know if this is normal for other people, but the day after my infusion, I felt like I had the energy to run an entire marathon… I noticed, however, that as the month between infusions was coming to an end, I felt extremely tired all the time just like my body was running out of battery. But, I enjoyed the fact that most of the month, I had much more energy to do everything that I needed to do. Remicade stopped working for me, and I haven’t felt that reaction with any other medication, but every body is different, you may not have that reaction to Remicade, but talk to your doctor, there may be something he or she can do to help by adding or removing certain medication.

Explain to those around you that fatigue IS a part of RA. Getting people to understand the fact that you’re not being lazy, you’re just too exhausted is not an easy task but a necessary one. When I was first diagnosed, I was falling asleep all the time, the fatigue was so overwhelming it was just making me fall asleep everywhere. I made sure my family and my teachers knew that I wasn’t suddenly suffering from narcolepsy as well as RA, but that I was just severely exhausted. I’ve since have come to have to explain to friends, boyfriends I had in the past, co-workers, bosses etc. It doesn’t always work, and even the ones who do understand are not always supportive, but it’s better than going through life feeling misunderstood by those around you or trying to overexert yourself so people won’t think you’re being lazy.

The struggle with fatigue is constant, but manageable if you do at least some of these things. There are many factors that can alter the amount of fatigue you’re feeling, but if you counter those negative factors with positive healthy habits, I think it kind of balances out. Remember to take it easy on your body, you’ve only got one and it’s attacking itself, so you have to work extra hard to make sure it doesn’t get any more damage than what it’s already doing to itself.

Choosing the Bright Side of Support

When I was first diagnosed with Juvenile Rheumatoid Arthritis at 14, I looked forward to finding anyone who had the same condition so I could talk to them. Somehow I knew that meeting someone who was going through or had gone through the same things I was going through would make me feel better. I soon found out that that is not always the case. It really depends on the person. Some people, blogs, websites, magazines, support groups, etc. focus more on the negative part of a medical condition. When you’re looking for support, someone to cheer you up and hold your hand, talking to someone who focuses on the negative can really destroy you. I’ve been very blessed to have an extremely awesome support system, so I learned early on that just because you can talk to someone about your problems, doesn’t mean you should.

When I was diagnosed, I lived with my aunt in Mexico City and was very depressed. My aunt met a woman in her 40’s who had RA for several years and she looked fine. Since I was still in a wheelchair and being hand fed, my aunt introduced me to her to give me hope. I have to say, just seeing her made me feel better about my future. That is, until she started talking. I know she was trying to prepare me for what was to come, but she made it seem like it was the worst nightmare anyone could ever have to go through. All the meds, side effects, surgeries and people not being supportive. I was even more depressed than before I met her. I couldn’t understand, she looked fine to me (at least MUCH better than I was) but the way she talked about it made it seem like the end of the world. When I told my aunt, she reminded me this lady had been sick for over 20 years, and medicine had advanced a lot since. My aunt always knows what to say because she herself suffers from Chronic Thyroiditis (Hashimoto’s Disease) since she was 14; so she knows how to relate to someone in a bad medical situation.

I realized talking to my aunt, who didn’t have RA but understood living with a chronic illness, really did make me feel better about my future. After all, when she was diagnosed, they didn’t think she’d live to see another year. Most of the times she had supportive things to say, things to give me hope and make me laugh. I wasn’t the easiest of patients though, I was young and scared and some days all I wanted to do was sleep and cry. My aunt wouldn’t have it, she’d make me get out of bed and go grocery shopping (in a wheelchair) with her, or talk to her while she did her chores, anything to get me out of bed. I’d get so angry at her, at that point I thought she just didn’t understand my physical and emotional pain. I’ve since come to understand she understood perfectly well, and was trying to ease my emotional pain by getting my mind off of my own misery and showing me there’s more to life than being sick. I know it was unbelievably hard for her, because she loves me, to see me in pain and not give in to her own pain, but I gotta say what she did absolutely worked.

My mom suffers from Lupus, she was just diagnosed a few years ago, so I tried to be the support for her that my aunt was for me. Gave her pointers on how to make her life easier, reminded her of the importance of keeping up with medicines and appointments and staying positive. It wasn’t easy on her, because she now understood the physical pain I went through everyday; so she became depressed. I told her not to worry about me, at that time I was doing excellent, my RA was under control, I had a good job, my own appartment, and was going to college. Life was awesome! I told her, it’s not always a piece of cake, but you push through it, and it’ll always be worth it. She started doing better, but then she joined a Facebook group that was just the worst thing that could’ve happened to her. She’d call crying at least once a week that someone else in her group had died. I couldn’t understand why she just didn’t leave the group, I’d tell her “but you’re ok, why are you seeing cases that are worse off than you and thinking that’ll happen to you too?” With these cases, you don’t know the details, if they had good medical care, or kept up with their meds. There’s no need to make yourself anxious over something you don’t have all the details about. I strongly suggested she ditch that group and look for a more positive one.

In this life, I’ve encountered many people with my same condition. I’ve joined blogs, read magazines, joined Facebook groups and more; but I don’t always stick around. I’ve come to learn that negative and positive thinking is contagious. I try to spread the positive, but sometimes some people are so wrapped up in what they’ll never get to do or the pain they’re going through that their negativity overpowers your positivity. It is also important to be able to give and get tough love, sometimes you’re so wrapped up in what’s wrong, that no amount of positive talking will help. It is then, when you need people around you who won’t let you lay in bed everyday just crying yourself to sleep. It’s happened to me a few times, and I have had amazing people around me who wouldn’t leave me alone no matter how much I told them I wanted to just sleep. Talking to people who have gone through or are going through what you’re going through is EXTREMELY helpful, but you have to be cautious with whom you talk to, sometimes someone who isn’t going through the exact thing you’re going through might be just what you need. We have to look out for ourselves, our emotional and physical well-being, and if something or someone is bringing us down, we need to run away in the opposite direction as fast as we can.