The bags under the eyes. The prednisone bloat. Mood swings that would make the devil run away from you in horror. Rashes and mouth sores that make people do a double-take.
Oh no, this isn’t the beginning of some scary movie…it’s a Lupus flare up!
A Lupus flare is exhausting, unwelcomed, taxing, and vicious, and although it may knock you down for a bit, it doesn’t have to set you back completely.
So what should you do during a flare, when all you want to do is crawl under a rock? Let’s get into the nitty-gritty.
Today is the first time in almost a month that I feel my “normal” body is back. I experienced a horrendous flare that culminated with a diagnosis of Leukocytoclastic Vasculitis and basically stayed in bed for over three weeks.
For those of you who have Lupus, have experienced a nasty flare, and may be considered somewhat Type A in personality, you know how difficult staying in bed can be; your mind wants to do a million things, yet you don’t even want to think about rolling over to take a sip of water, (even though your mouth is as dry as a desert!).
Even though I have gone through 12 years of flare ups, they occasionally do a real job on me – mentally. And, that’s what I want to talk about today – because I don’t feel like this aspect of Lupus is spoken about enough.
Flare ups, although they wreak havoc on the body, can be extremely taxing to the mind. Of course, positive thinking, having a support system, faith, and other aspects can help with the psychological assault we experience during a flare, but what happens when our body and mind is so utterly exhausted we sometimes can’t see the light at the end of the tunnel?
I thought about this earlier today as I ran errands (for the first time in almost a month). I felt like I was on top of the world, yet a week ago I honestly believed I wouldn’t pull out of this one (and for those who know me personally, this attitude is very uncommon for me…I rarely give up).
This recent flare up forced me to examine things about my attitude and my illness that I have not wanted to face. I had to finally admit to myself and my family that 12 years of a horrible illness is extremely hard on the mind.
Chronic illness period, no matter what the diagnosis, wears you down – it’s hard to cope sometimes. I didn’t want to admit this for several reasons; I thought it would be considered “giving up,” that I would no longer have control, and to be honest, I didn’t want to hear the so often used phrase, “Don’t worry, things will get better.” But I realize that it is impossible to be strong and on point 100 percent of the time – it’s impossible for even healthy people to be this way!
Now, I am not saying be negative and let negative thoughts control your mind. With chronic illness, there is no time or room for negative thinking; we have enough to think about and focus on. But, it is okay to just retreat for a little while, let your friends and family help, discuss how you are feeling with your support system, take a little extra time to care for your body, pamper yourself, speak with a counselor if you feel you need to, pray, etc. And though we may take a “time out”, there is one thing we cannot do during a flare up, and that is give up on our goals and dreams.
During the year I wrote my first book, I noticed something about most of the Lupus patients I interviewed. Like myself, they were on-the-go, Type A, motivated individuals. Even with an illness that dishes out physical and mental assaults when least expected, these men and women keep going. Oh, they had their bad days, but I was able to capture tangible tips from each one of them on how they got through those horrible times.
I combined their tips and tricks with mine and came up with a “Kick Flares in the Ass” training manual. Okay, okay, it’s not the most professional sounding manual name, but honestly, what Lupus patient doesn’t want to kick Lupus in the …well, you know.
Here are some ways me and many other Lupus patients get through the, “Holy cow, when is this going to end,” flares:
- Write Yourself a Prescription…for Information: One way to prepare yourself for the difficult times with Lupus is to educate yourself. Research and learn as much as you can about the potential hiccups that may occur. This way, you won’t be completely thrown off-guard should one arise. The more you know, the more you can understand what is happening inside your body and why.
- Make Healthy Investments in Yourself – Flare ups are extremely tough on the body. Going into them as the best version of yourself can help. What I mean by this is taking steps during the time you aren’t in a flare up to get your body as strong as possible. Stop smoking, rest when your body is telling you it needs to rest, consider healthier eating habits, invest in a nutritionist if possible. If monetary factors prevent you from seeing a nutritionist, visit your local library or bookstore and scour the many books regarding auto-immune disease and how diet plays a role. Once you create a path for yourself, review it with your doctor and make sure everyone is on the same page. A recent Chronic Care in America survey found that individuals with chronic disease who made diet and exercise changes, and didn’t put these two important factors on the back burner, were much more successful in managing their chronic illness.
- We Got Family – Whether your support system involves your friends, family, church members, illness support group members, etc. it is important to create a group of people that have intimate knowledge of your situation and understand (and are willing to help) during the hard times. Over time, you will have created a group of “People who will take me to the doctor,” “People who will help me get food, bathed, washed up,” “People who I can pick up the phone and express my feelings to without judgement,” etc.
- Don’t Let Depression Take You Out – Over a third of men and women who live with a chronic illness are plagued by depression. It’s true, chronic illness can be extremely trying on the mind and dark, negative thoughts may creep in. Familiarize yourself with the signs of depression. If you feel as though you are spiraling out of control and you just can’t seem to see a way out, reach out to someone.
- Let’s Get Physical – Most likely, during a flare, you won’t be able to do much. For me, taking a shower or getting down the stairs is literally a half an hour event and results in a nap. And this is okay. During this time, our body just needs to rest. But…when you aren’t in a flare, it is so important to incorporate some type of physical activity and get the body moving. I’m not saying go sign up for a spin class. Start off slow. A five minute slow walk is something to consider. I remember how frustrated I was when I could literally only walk four or five houses away from mine and would then be exhausted. But, with continued effort , I eventually made it around the block…and then around a few blocks. After a year, I joined a gym and began swimming three times a week for 45 minutes each. This was a long road, but it began with me in a wheelchair, unable to care for myself and culminated in swim sessions at the gym! It’s possible. Start with small goals, don’t give up and…don’t beat yourself up if you have to take a few steps back every now and then!
- Consider Alternative Treatments – I’ve spoken to many Lupus patients who swear by alternative treatment methods in conjunction with their medication. Some of these include massage, yoga, pool therapy, acupuncture, essential oil therapy, physiotherapy, etc. Some therapies, such as the pool therapies, sometimes cater to those with chronic illness – you may want to look around your neighborhood for a program like this!
- Don’t Discount Spirituality – Numerous studies have shown that having faith and spending time in prayer lessens stress and can help speed up the healing process. Chronic illness is just that, chronic. Unless there is a cure for Lupus, it may be around for awhile. Don’t ignore your spiritual self or journey when trying to cope with a chronic illness. For the body to be in unison, your physical, emotional and spiritual needs must be properly met.
- Start a Gratitude Journal – When someone first suggested this to me, I thought, “Seriously, I barely have five free minutes some days.” But, the reality is, we all have an extra two or three free minutes and that is really all you need for this little routine. I bought a small dayplanner, rather than a journal and started by writing a few notes each day: “Today I am thankful for: no fever upon waking, beautiful weather, pain free, was able to run errands without help, etc.” Some days, it just says I am grateful that I woke up. Anyway, my point is this: overtime, it forces you to start focusing on the good things you experienced during the day and when you continually have this outlook, you begin to feel better and think more positively.
- Set Short-term, mid-term, and long-term goals – I truly believe everyone needs to set some goals for themselves. Our minds cannot always be focused on our illness – it isn’t healthy and you will drive yourself crazy. Goals can be small – such as, I will walk a half of block this week, or I will try to cut out some fast food, or I will finally begin that book/hobby/etc. I’ve been wanting to start for so long.
- Create your goal list – list as much as you can, no matter how small or large. Trust me, you will feel such a sense of accomplishment when you start checking them off one by one. And, knowing you can still achieve so much even with an illness makes you realize Lupus doesn’t have to win. It isn’t a deal breaker and it’s not a life/death sentence. Do some research about all of the incredible people who have done extraordinary things while battling an illness. Inspiration from others is a great motivational tool!
What are some ways that help you get through a flare up? Please share them, as we would love to share them with our readers!
In love – Marisa