After my post last week I’ve been thinking about how I perceive my having lupus (and Sjogrens and Raynaud’s). I didn’t want to discourage people from realising their dreams as I spoke of never being able to play soccer again. But I’ve realised that it’s ok to be realistic, be creative and be positive. And dare I say, find a little humour in your gimpy-ness.
Through living with lupus for almost 20 years now, for the most part I feel content with my abilities and disabilities. I’ve mostly accepted that some things are not for me. It’s a constant process figuring out “what I can do” “what I can’t do” and “what I shouldn’t do”.
This was very, very hard in the beginning. It was new, I was adjusting to a new reality. I didn’t know my triggers, I didn’t even completely understand lupus and how it would affect me. Medications changed frequently and changed my body and how I interacted with the world. And on top of this, I was in COLLEGE! I was so frustrated to ‘miss out’ on the college experience. I was away from my home and becoming an adult so I was looking forward to being a little stupid and foolish. *silly me*
After college the limitations continued as I entered the workforce. I started my career in a corporate environment. That life was hard, and hard on my body (more on that in an upcoming post). Because of numerous flares I had while working, my doctor had to write letters to my employer to say that I needed to take time off from work (even not working at all).
After three years, I decided to switch gears, to have a regular 9 to 5 workday with minimal travel and limited weekend work. I also looked for workplace flexibility and an organization with people who are generally understanding of illness. Sure, I was limiting my options for the type of workplace I could tolerate, but it seemed like a necessary barrier in order to function.
The things I’ve changed in my life over the years to manage my lupus cover all areas:
- not drinking if I’m on certain meds
- no going out if I am flaring or think one is coming on
- asking ahead of time what the social outing will be like (Will there be seating available? Is it an outdoor thing? Is it an accessible venue? etc. etc.)
- saying ‘no’ to certain work
- asking for working at home on certain days
- not doing any chores
- buying already prepared meals (or take out)
So what is someone supposed to do? For me, on the one hand I thought, “why should I limit what I do? Am I missing out on having a fuller, more ‘fantabulous’ life?” On the other hand, I know all too well what happens when I over do it.
Ok, that’s all well and good, but what’s the moral of the story?
I would say, don’t necessarily limit yourself, but be smart about your options. Once you know your triggers for your flares, see how you might be able to do something different. Yes that means for a while you might not be able to do things as you once did, but once you learn, I believe it will be easier for you to live on automatic and enjoy the life you have (and not think of it as limited).
Look for the silver lining. It may be VERY hard some days, but it helps to think of creative ways to find the open window when a door is closed.
Have a sense of humour
I make fun of myself all the time. I’m gimpy. I had a good laugh when an old lady (seriously) passed me walking down the street. I decorated my cane with a little bling, I can predict the weather, I’m a great food tester, you know…
Unfortunately because of the nature of lupus, some folks don’t have the support of friends or family (or work). It’s the “but you don’t look sick” thing that is so frustrating. They might say you are faking it, are lazy or just milking it. This is sad and annoying, hurtful and maddening. Support, however, can come in different forms, there are online communities and in-person support groups (and blogs, and twitter, and on-and-on). Don’t ever discount that there is someone like you out there who knows what you are going through. You’ll have to be a little proactive to get involved, but for your own self-preservation and sanity, finding support anywhere is crucial to your outlook.
See the good in others
While you are feeling badly, be appreciative of those who may be helping you and think about how you can help someone else. Not only will it distract you a bit, it might make you feel good too.
Don’t worry about your identity
I have learned to embrace lupus; it drives me to help myself and others. It helps me to relate differently to others, be more compassionate and realise that I don’t need to be a certain way to live a full life. Does that mean that lupus is my identity? Honestly, I don’t know the answer to that because it affects what I do on a day-to-day basis. I don’t ever forget that I have lupus. How could I? Taking multiple pills every day, noticing if a place is accessible or not, etc. But at the same time I am still ME. Me before lupus. Me as I’ve grown. My personality is the same. I’m stoopid shy and can’t keep still. I can’t wear heels, but I seriously browse and drool.
So…are you living a life with(out) limits? It really is truly up to you!