Thursday, 31 October 2013

What Not To Say

They say, "Sticks and stones may break my bones, but words will never hurt me." I think I beg to differ. Even to the strongest among us, words can truly hurt and cause a pain that takes time to get rid of. I've mentioned before that with having this disease, you have to have thick skin; because as much as there may be people rallying around to support you, there are people who really don't think before they speak. However, in their defense (well...some of them), they might not know that their simple comment can be hurtful simply because they don't understand your condition and how complicated any disease can be. This is why awareness is so important. And not only for family and friends who are more intimate with your experience, but for those with whom you regularly come into contact. I must say I'm quite happy that I had to search for most of these comments online because I have not been the recipient of many unpleasant comments or questions. Sadly, there are many patients who have. Let's try to understand why these five comments hit hard:

1. "But you don't look sick!"
When we have a cold, there may be a runny nose or sneezing and there's no doubt you're sick. As human beings, I think we like to have those measures of proof that there's something wrong. It makes us more comfortable to accept the information. I have mentioned that some of my symptoms include scarring on my face and hair loss. It makes it kind of obvious that there's something that is not quite right. However, for many lupus patients, there is nothing physical to show that they are sick. You might say their illness is invisible. There's no visible indication that something is wrong. Sometimes there's just this pain, this weakness that you really can't explain and it's called malaise. You can still walk, but your legs feel like lead. You can still swallow, but you have no appetite. You just feel out of it. We don't need to look sick to be sick. Please try not to downplay the way I'm feeling because of the way I look ... or don't look.

2. "You're getting too fat; you need to take control of your weight."
Sigh...this is a personal one that really gets me annoyed. Why people feel it's necessary to comment on weight is beyond me. We all have mirrors and know how our clothes fit. It's not your job to say anything at all. One of the main causes of weight gain in lupus is the fact that one of the common medications is a corticosteroid (different from anabolic steroids usually referred to in sports) called prednisone. These tablets go straight to the point of pain and reduce inflammation in a flash. However, the side effects and long term effects are not pleasant. One of these side effects is weight gain, especially puffiness in the face. You could have a mainly vegetarian diet and exercise regularly as much as want, you're still going to get a puffy face. Also, steroids make you feel hungry, so you always want to eat. It means making healthier choices during these times is very important. A comment about my weight is just reminding me that I'm battling a condition and regardless of that, I shouldn't have to explain how I look to anyone. Not even my closest friends and family members comment on my weight gain, so why should someone I barely know?

3. "Everybody gets tired" or "You're just not going to bed early enough."
Fatigue is a very real thing. It's not something that is easily fixed by sleeping more or being less active. It is an ongoing feeling of extreme listlessness that nothing seems to help. No amount of caffeine, sleeping more, sleeping less, exercising, meditation, or willing yourself to have energy seems to work. Many persons, especially in the workplace, don't understand how anyone can be that tired. Because lupus symptoms are so varied, it can be caused by different things: anemia, inflammation, depression and side-effects of medication. Patients can deal with fatigue by: 1. Trying to figure out the root cause of fatigue 2. Having rest periods of 15-20 minutes after being active for one or two hours 3. Taking medication that decreases fatigue 4. Putting in place measures to get a good night's sleep (ear plugs, masks, soothing scents or music, etc.) and 5. Walking regularly to increase the amount of oxygen in tissues. We'll try to do our part to curtail feelings of fatigue. Please do your part and understand that it's not always that easy.

4. Something I overheard someone say once: "Apparently she has lupus or something and gets depressed. Hello! When I get depressed, I just go shopping!"
Seriously? Your "depression" that is easily fixed with a new pair of shoes is not what we're talking about. For some patients, lupus comes along with feelings of hopelessness and helplessness - some of which can be caused by the mere fact that you're dealing with a difficult disease. There can be spells of crying, loss or increase of appetite, difficulty sleeping, low self-esteem, and loss of interest in social activities. I've seen where quite a few people lose even close friends because they aren't themselves, they've changed too much, or they're not fun anymore. It is not always a choice to "not be fun anymore." Sometimes just the thought of being around too many people is more than one can handle. Why am I going to drag your evening down knowing that I feel the way I do? You might be able to help by sharing some of the nonprescription methods of dealing with depression. This site seems pretty useful.

5. "Oh no, you have lupus? That's what my Aunt died from!"
Thank you. I'm already quite aware of the fact that this can be a fatal disease. I know this comes rushing out of most person's mouths before they realise what they're saying, but please try not to say it. It's just one of those things we don't want to hear...at all. I don't even know how to expound on this one. Just don't say it...please and thanks ;-).

On the other hand...
A lot of people seem to get annoyed when people tell them about natural ways to recovery and the fact that exercise is important. Personally, I welcome that, because no amount of info in that regard can be too much. So yes, tell me about some new doctor you heard of, who is using cactus plants to stimulate your chi and align your chakras to get rid of inflammation (hey....it could be a thing! Lol). That's helpful, because I may not have heard about it and it might be something useful to check out.

Although I still get emotional about it at times, I'm trying a new method to respond to inconsiderate comments. Without saying too much, I let them know that this is not something I can easily control. I would prefer not to be reminded that this is a difficult time for me.  Please feel free to share anything that you have been told or asked that gets you down and how you deal with it. Sick or not, we've all been there. You are not alone.

Blessings...


Friday, 11 October 2013

Let's Get Physical!

It's been a while...I know. Between getting back into the groove of work (which is going pretty well so far), not feeling like I had very much to say and allowing a negative comment to get to me waaaaay more than I thought I had - let's just say it has taken a while to get inspired. And that's ok. Life is like that sometimes. However, a friend of mine reminded me this morning that October is lupus awareness month! I didn't realise it, because there's also lupus awareness in May. The way I see it though, any month is the best month to raise awareness. So here we go!

One of the things I have been trying to get back into is exercise. I had enrolled in the local gym early in the year, because I'm the type of person who has to pay for something in order to keep up with it. I take the money I spend on things very seriously. I was doing pretty well until just before summer (when I started feeling worse and worse) and just could not find the energy to leave home in the mornings. And even if I did go, I couldn't keep up with the exercises. I ended up feeling worse afterwards. I think one of the main problems was that I was pushing myself too much. With lupus, you have to pace yourself and not demand too much at one time, because joint issues are one of the main complaints.

Joint pain (arthralgia) and inflammation (arthritis) can make even the simplest tasks incredibly difficult. I remember a time when I was going through a rough patch (I think it was late 2007) and every morning I would wake up to swollen fingers, elbows, knees and ankles - any part with joints I needed to bend with ease. I still had all my hair at the time and it was very hard to style it properly; getting on clothes was a task; and just walking took an age. I seriously felt like I had become an old lady overnight! At first, these feelings would subside as the day progressed, however, over the next few months, it became an all day thing. I was no longer able to dance (one of my passions) and playing the piano and cello became increasingly difficult. Luckily, everyone was very patient with me. My family helped me at home as much as they could; I can still see my boyfriend at the time (now husband :-D) pulling me up off the couch after we watched tv because it was that difficult just to get up and helping me to move around wherever we went; and the school I worked at allowed me to change my schedule so that I would be working at a time that suited how I was feeling. Eventually, I was put on prednisone, a common corticosteroid used to fight inflammation. I think I have mentioned before that this drug can have serious long-term effects to bones and joints, but boy do they help you feel normal again! They took the inflammation right down and I was able to move around as freely as ever. So...back to exercise!

I have read that if there is inflammation in the joints, it is important to be careful when exercising. Activities such as tennis, bowling, golf, weight lifting, or rowing can be very harmful to inflamed joints. They tend to put too much stress on one single joint. Good exercises are isometric exercises (posing for a long as you can in a particular position), stretching and Pilates. These strengthen the muscles without moving the joints too much. Also, walking, swimming and bicycling are good to get into. Of course, those are typically outdoor activities so remember the need to stay out of the sun. Good thing treadmills and stationary bicycles were invented!

The less expensive route is, of course, is to workout at home. I have found that when getting into certain "fad" exercises (you know the ones that tell you to do specific things and each day the number increases?), I can't keep up. I give in within five days and feel like a failure. I need balance. Of late, I have started to put together my own little routine for the days I don't go to the gym. One thing that has really helped is that I have been using a pilates ball to help me to do things like planks and crunches. Over the years I've wondered, "why am I so terrible at planks, pushups and crunches?" I just can't seem to push myself to complete a desired set. For the planks and pushups, I have realised that I have very weak elbows, made worse by the fact that they cannot straighten (something all my dance teachers cuss me about - "Straighten your arms, Emily!' - I can't help it though!). I'm told I have arthritis in them. So I now use the ball to cushion my elbows while planking. For pushups, I stay on my knees to reduce the pressure on my elbows, but lean forward to make it a little harder and feel more of a burn. For crunches, I rest my back on the ball. It has nothing to do with my elbows, but it's just way more fun, waaaay easier and I still feel the results ;-). YouTube has been a great friend too - different videos give ideas for whatever part of the body you want to work. I've been switching it up every week...tryna make it fun and interesting. I also found a good, manageable 'before shower' set of exercises: 50 jumping jacks, 30 second plank, 30 high knees and 20 crunches. Early on in my diagnosis, my mother had bought a rebounder. This is supposed to be an excellent way to both exercise and it has other great health benefits. It has been hard to keep up with it, but I need to get back on that...literally! Of course, this all has to go hand in hand with good nutrition. Water is clearly an essential part of every day and some of the top foods to fight joint inflammation include: salmon, almonds, papaya, apples, black beans, kale, broccoli, turmeric and ginger.

So that's my two cents on exercise. Remember...pace yourself and do what you can manage, but try to do something every day. Once in a while, find a fitness/dance class to go to. As much as you're being told what to do, listen to your body and don't stress out your joints too much. Happy workouts!