living

30 Things About My Invisible Illness

On the occasion of World Lupus Day, celebrated this 10th May, I reveal 30 things you may not know about my invisible illness.

  1. The illness I live with is: Systemic Lupus Erythematosus (I also have Joint Hypermobility Syndrome and scoliosis!).

  2. I was diagnosed with it in the year: 2016.

  3. But I had symptoms since: Weird fact : In February 2016, blood tests indicated that I had lupus, but I had no symptoms at that time. The symptoms appeared a few months later, in July 2016.

  4. The biggest adjustment I had to make is: Pace myself. Fatigue is a constant symptom, and things get worse if I ignore it and push myself too hard. I have to carefully plan my activities and systematically include periods of rest in my schedule.

  5. Most people assume:  not much, most people do not know about it.

  6. The hardest part about mornings are: Waking up and realising it’s a bad flare day. It feels like blocks of metal have been placed on each part of my body including my forehead, throat, stomach, arms, legs… and it requires a tremendous amount of effort to simply get out of bed and reach for my medications.

  7. My favorite medical TV show is: House!

    When the team tries to figure out what’s wrong with a patient, someone will usually suggest that it might be lupus — probably because it is difficult to diagnose, because it has a wide range of symptoms or because it affects several parts of the body simultaneously — but “it’s never lupus”.
    (Except in Season 4, Episode 8):

  1. A gadget I couldn’t live without is: Does my blanket count as gadget?
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  2. The hardest part about nights are: Painsomnia. Being exhausted but too achy to fall asleep.

  3. Each day I take: 2 or 4 pills (I take some medications on alternate days).

  4. Regarding alternative treatments I: think they can be as important as medication, but it’s all about finding out what works for you or not.

  5. If I had to choose between an invisible illness or visible I would choose: I wouldn’t choose —I don’t think that there’s one type of illness which is preferable to another.

  6. Regarding working and career: I am lucky enough to be able to work full-time (which is rare for lupus patients). Lupus has positively influenced my choice of career as it encouraged me to reconsider how I really want to allocate my time and energy, and I developed a keen interest in non-profit organisations involved in healthcare.

  7. People would be surprised to know: that being in the sun can cause a lupus flare.

  8. The hardest thing to accept about my new reality has been: The unpredictability of lupus. I still have to get used to the idea that we cannot know how my lupus is going to evolve, which part of my body might be affected or how my life expectancy is impacted.

  9. Something I never thought I could do with my illness that I did was: live with it.

  10. The commercials about my illness: are non-existent!

  11. Something I really miss doing since I was diagnosed is: being in the sun.

  12. It was really hard to have to give up: certain ideals which I had assimilated as my own — thinking that my worth could only be determined by my productivity, that being ‘limited’ made me boring, that being sick made me unattractive and so on. It takes a daily amount of work to slowly get rid of that type of social conditioning.

  13. A new hobby I have taken up since my diagnosis is: blogging and learning about other health conditions.

  14. If I could have one day of feeling normal again I would: spend hours swimming while the sun is out.
  15. My illness has taught me: to slow down and open up.

  16. Want to know a secret? One thing people say that gets under my skin is: “You should not be eating that.”

  17. But I love it when people: ask questions or say that they’ve been researching my condition!

  18. My favorite motto, scripture, quote that gets me through tough times is: The song “Fix You” by Coldplay.

  19. When someone is diagnosed I’d like to tell them: Trust your own pace. It’s okay to go through a period of grief, do not expect to “think positively” right after being diagnosed with an incurable and potentially lethal condition. Listen to your body and speak up for yourself; you’ll receive a huge amount of (sometimes unsolicited) advice but you are the only one who knows what you are going through.

  20. Something that has surprised me about living with an illness is: how much you can feel that you are not ‘suited’ to live in this world, and how many efforts it can take to function in it.

  21. The nicest thing someone did for me when I wasn’t feeling well was: filling my hot water bottles, cooking something special, coming to see me at my place because I couldn’t go out… There’s an endless list of lovely things that my family and friends do.

  22. I’m involved with Lupus Awareness Month because: I hope it help others better understand lupus patients and their needs — I myself didn’t know about the disease before diagnosed, and it’s commonly referred to as a “cruel mystery”.

  23. The fact that you read this list makes me feel: grateful!
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First video!

Well, hello!
I received a bunch of questions about lupus and I decided to make a short video to answer them. I speak in Mauritian Creole, and there are English subtitles:


Remember that Lupus Awareness Month is just around the corner! Here is how you can help: http://www.lupusawarenessmonth.org/

All is not lost yet — YOUTH SCEAL

I talk about the implications of being diagnosed with lupus in my early 20’s on the Youth Sceal blog.

When were you diagnosed with the disease? What is the disease, how does it affect your body?
I was diagnosed with lupus (Systemic Lupus Erythematosus) in July 2016, at the age of 21, and like many other patients, I didn’t know about the disease before my diagnosis.

via All is not lost yet — YOUTH SCEAL

The Bright Side of Chronic Illness

Being chronically ill is a sort of perpetual upheaval in which unexpected physical changes are accompanied by their load of anger, confusion and fear. Yet, through all of that mess, my illness is also causing my perspectives to shift on several levels, and is helping me to grow in ways which I would not have suspected. Above all, it is a process of learning, changing, discovering and finding reasons to be grateful:

  • Living more fully

Having your health at stake forces you to develop a clearer sense of priorities – defining what are the things which matter to you and make you happy, and progressively drawing boundaries to keep away from the petty, toxic and unnecessary ones. Your well-being climbs up to the top of your priorities.

You also become greedy for life, seeing it as a one-way ticket for a trip and wanting to make the most out of it. And because you abruptly realise that nothing can be taken for granted, you learn to savour the tiniest things and allow yourself to feel more deeply.

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  • Redefining relationships

As you are limited in physical and emotional energy, you instinctively distance yourself from people who are not worthy of your time. Besides, talking openly about your illness exposes the vulnerable, not-so-glamourous parts of you, and invites people to decide for themselves whether they can deal with that, and how far they want to be involved with you or not. Progressively, your circle shrinks, and you are left with the ones who are ready to stick with you, who care and on whom you can rely on.

And as you have this growing notion of how fragile life is, you’ll find yourself cherishing quality time with your loved ones, craving honest conversations, hugging more often and knowing how important it is to let others know how you feel about them.

  • Learning to love your body

It might not function properly, and people will always remind you that it doesn’t look as good as the general beauty standards expect it to… But that body is a fighter: battling everyday against an illness which doctors, scientists, researchers and all the brightest minds still struggle to understand. Even when it is exhausted, it refuses to give in to your disease, and that alone is enough to make it worthy of love.

  • Fragility breeds strength

Managing your disease requires you to be cautious about things which appear insignificant (not to say ridiculous) such as avoiding the sun, not eating spicy food or making sure you don’t get bitten by insects. While this can leave you feeling frail and tiny, your illness will also make you disciplined, brave, and resilient.  And regardless of how often you’ll think “That’s too much” or “I’ll never get used to that”, you’ll find unsuspected resources within yourself to deal with whatever lies ahead.

  • Being your own advocate

Living with an illness which is unknown by many implies that you will have not only to explain but also to argue – making it a point to state what things are right for you and what makes you unwell, saying no when needed, hustling and changing things around to create more comfortable patterns in your environment, re-asserting the validity of what you feel when they are imperceptible to others, and too often, having to challenge negative assumptions about the way you live (“I am not just lazy, lupus fatigue is one of the most common symptoms…”). You will find yourself able to communicate your needs more clearly and having the opportunity to educate others about your condition.

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