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6 Ways I’m Taking Ownership of My Illness

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What helps me to approach my disease more positively is accepting it as just another part of me—as valid as my messy hair, my legendary clumsiness or my unconditional love for pizza. It deserves to be addressed and given its own space, and these are some of the ways I’m getting to that :

1. Learning about lupus

While lupus still remains a ‘mystery’, there are a bunch of online resources which document what is known so far. (It is one of the things which make me incredibly grateful to have easy and regular access to the internet.) I try to stay updated about several aspects of the disease including how it affects different body parts, side effects of medications and what researchers are currently focusing on.

Not only did it help me to develop ways to better manage my disease, but— I’m not even sure why— it is also weirdly empowering to know what’s going on, and to be able to explain it to yourself and to others.

For instance, there were times following my diagnosis during which I wished I could get into my own body and see what’s happening in there (Thanks to watching The Magic School Bus as a kid). I had forgotten about that until some time ago, when I stumbled across a Youtube video modelling how lupus ‘works’ and had the satisfaction of being finally able to visualise what happens in my own body.

2. Reading other patients’ stories

For a start, going through social media posts from other patients helped me confirm patterns which I noticed about my lupus but which have not yet been medically proven. One such example is how I had the impressions that my periods could cause lupus flares but couldn’t find a single medical article which proves this to be true. Yet, by going through forums, I read messages from a lot of other patients who also experienced flares during their periods, indicating that this is fairly common.

Another perk of going through articles written by fellow patients is that they tend to cover more practical aspects and emotional aspects of daily life with lupus or another chronic illness. The Mighty is an interesting resource when it comes to that: with articles ranging from how to manage college life with lupus to why dogs are a great source of support.

3. Asking questions

Closely related to my first point about educating myself, is getting actively involved in the process of learning by asking questions. I usually note down questions/issues as they pop up and arrive to my appointments with a list. I’m lucky enough to have healthcare providers who take the time to address my concerns, and who admit their own limitations when it gets into an area of lupus which cannot be explained yet.

4. Proper organisation

Having my own system of medical record allows me to track my health and to be equipped with accurate information whenever I need to see a new healthcare provider. Some of the tools I use include: a diary with daily entries about my meals, medicines, weight, hours of sleep and symptoms; a file containing prescriptions, blood test results and receipts arranged chronologically; my phone, daily diary and desk planner on which I note appointment dates (and questions to be asked during those!).

5. Communicating my needs

Managing my diet, activities, sleep and other parts of my lifestyle are as important as adhering to a treatment to control lupus. It tends to be embarrassing to be the family member/friend who constantly requests “Can we do this instead of that? Because of lupus (…) “, but I’m slowly trying to get past the discomfort and the impression that this makes me a picky/annoying person. It doesn’t make sense to keep quiet about my illness and then be annoyed at people who “don’t get it” (as I initially did) or to simply opt out of certain activities rather than coming up with alternate ways in which I can participate (which I also did): speaking out is therefore a must. Over time, my loved ones have learned to anticipate and accommodate my particularities— another of those little things which make my life easier and for which I’m utterly thankful.

6. Raising awareness

A few weeks after my diagnosis, as I was browsing through ways to cope with chronic illness according to the Acceptance and Commitment Therapy, I came across the sentence “Create meaning out of your pain“. Sharing information about lupus through a blog spoke to me: it gives me another reason to learn about that topic, it can be helpful for both lupus patients and those who know nothing about the disease and— as someone who studied and works in Communications— blogging, social media management and content creation allow me to exercise my skills and do something I enjoy.

It turned out to be a great choice and, to me, few things are as rewarding as noticing that others show interest and want to know even more about lupus. Being told “I went through your post, do you mind if I ask you some questions about lupus?” is always a win!

Lupus and Mental Health

Lupus can be stressful and stress can cause lupus flares.  This simple fact compelled me to reconsider my definition of ‘health’ in favor of a more holistic and inclusive one which takes into consideration its psychological component. This perspective became increasingly relevant as I came across a surprising number of social media posts from fellow lupies who were mentally hitting rock bottom as they battled the disease.

From what I have gathered, below are a few of the ways lupus can have an impact on one’s mental health:

  • Living with a Chronic Illness 

Over the years, several researches have established a link between chronic illnesses and depression and/or other mood disorders. According to the Lupus Foundation of America, 15-60% of people with a chronic illness will experience clinical depression, the most common cause being “the emotional drain from the stress of coping with the complications of physical illness. Add to that economic, social, and workplace concerns.”

One notable pointer is the process of grief (Denial, Anger, Bargaining, Depression and Acceptance) as one experiences the loss of the former ‘healthy’ self.

Other sources highlight the way chronic illnesses can limit one’s involvement in rewarding activities (For instance: Lupus photosensitivity = Not being able to spend too much time outdoors during the day. Unexpected lupus flare up = not being able to attend social events which were planned a while back).

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  • Lupus Can Affect the Central Nervous System

As lupus can attack any part of the body, including the central nervous system, brain involvement can lead to depression (amongst other disorders such as mania, schizophrenia, and psychosis).  Other cognitive dysfunctions can occur, including confusion and memory loss.

  • Side Effects of Medications

Several medicines used to treat lupus – from Prednisone to painkillers – have been shown to affect the mood and sometimes cause depression.

About Stigma…

There’s a common misconception that seeking professional psychological help is a sign of weakness and the inability to take charge of your life.  Ideas such as “It is your mind, you are the only one who can sort through it.”, “Since you’re going to have this disease for your whole life, you need to toughen up and get used to it.”, “There are people who deal with worse problems than yours, and they do it on their own.”

Unfortunately, the taboo about mental health issues (like many other taboos) only worsen the situation by making people hesitant to reach out for professional help.

Cognitive Behavioral Therapy is currently helping me to see things more clearly, and tame that irrational fear of life-threatening complications, the frustration of having to give up on some activities, the anger of my body not living up to the expectations of my mind… I cannot stress enough how important it is to accept our own limitations in dealing with these challenges, and how there is nothing shameful in seeking professional assistance.

My Lupus Kit

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(From left to right, top to bottom)
The pills I take everyday: Plaquenil, Prednisone and Vitamin D supplements.

Health diary: With daily entries to track what I eat, what medicines I took, other factors affecting my health (stress, the weather, lack of sleep), and my symptoms

Health file: In which I keep all my blood test results, prescriptions and other medical paperwork.

Hot water bottle: To help with joint and muscle pain.

Painkillers: Duh.

Thermometer: To monitor fever during flares.

Oral cream: To treat mouth ulcers

Mosquito repellent: Since my immune system is ‘hyperactive’, insect bites provoke severe and prolonged reactions.

Sunscreen: As sunlight can trigger a lupus flare.

The Road to Diagnosis

June 2015:
I notice that my shoulders and wrists have been making weird ‘snappy’ sounds when I do certain moves (such as rotating them) and after some time, I book an appointment with an orthopedist. Following the consultation, a few blood tests and two MRIs, I am diagnosed with Joint Hypermobility Syndrome, a  condition which implies that my joints are too flexible and can extend beyond the normal capacity.

However, my condition is not painful or severe and at that time, there is no need to start any treatment. I am told to have the same blood tests again in six months, and come back for another appointment to check how the rheumatism is evolving.

January 2016:
As advised, I repeat the blood tests for the rheumatism but one of them indicates something which is out of the normal range.  The laboratory recommends two other blood tests, and they also indicate unusual results. At this point, the orthopedist refers me to a rheumatologist.

February 2016:
First appointment with the rheumatologist who reveals that those blood test results usually indicate lupus (Systemic Lupus Erythematosus). Yet, I have no other symptoms of the disease and thus cannot be officially diagnosed as such. (4 out of 11 symptoms are usually required for a diagnosis).

The doc’ concludes that I am prone to developing the lupus and while I should take several precautions (such as avoiding exposure to the sun), at this point, he does not recommend starting any treatment. Since lupus medication can have serious side effects, it is not advisable to take them unless really necessary. He further proceeds to explain to me the symptoms of lupus and asks that I come to see him immediately if they start to appear.

On the other hand, he notes that I have a mild scoliosis, meaning that my spine slightly bends to the side.

July 2016:
Without any apparent reason, I start feeling quite unwell:  achy joints and muscles, fever, mouth ulcers, nausea, dizziness, extreme fatigue… I spend most of the time in bed or curled up on the couch, realising that these might be symptoms of lupus.
A few days later, I see the rheumatologist and he confirms that “the lupus is getting active“.

That was the turning point: pills, lifestyle changes, regular blood tests, appointments, new symptoms, side effects from medication, emotional ups and downs, this blog…

Lupus is often nicknamed ‘the great imitator’ for the way it resembles other diseases and is often mistaken as such. I consider myself as being among the few and very lucky ones who were diagnosed early, as opposed to lupus patients who suffer for years, going from one doctor to another, before being finally able to put a name to their condition.

Lupus and Stress

The effects of stress on the body, and especially on chronic conditions, have clearly been established. But I always pictured some middle-aged man wearing a suit who would suffer from cardiovascular problems due to his stressful corporate job. It was always something quite vague, tiny percentages and statistics which would not include me…

It thus came as a surprise how much can stress can actually worsen lupus symptoms.

During my first consultation, my doctor made it a point to ask “Do you get stressed easily?”. Well, yes. As mentioned in previous posts, I’m generally the type of person who’d get all worked up about tiny details. Stress was well embedded in my thinking process and my attitude.

My first flare actually occurred during the weeks preceding the release of exam results for my final university year, a period during which I’d anxiously refresh the ‘results’ page on the university website and fill my head with “What if I fail? What if there is a problem during the marking? What if they lose my exam script?”. Over time, I noticed how often stressful situations would suddenly cause my symptoms to pop up. It became clear that “stop stressing out” should no longer be merely some random advice coming from my family/friends or some resolution which I’d never put into practice.

I’m lucky enough to have a doctor who takes the time to ask “Has something been stressing you out lately?” during my consultations and explained in length that nothing was worth getting sick for. He further emphasises a holistic approach to health and recommended yoga, meditation, exercise or playing an instrument among other ways to manage stress, rather than simply prescribing medication.

I thus made a few changes in my lifestyle and implemented some changes to manage my stress (and thus, illness) properly:

  • Exercise

When my joint and muscle pain isn’t giving me a hard time, I usually go for Zumba classes twice a week. I happen to have an awesome teacher who took the time to discuss my lupus with me and understand what it entails. Those classes are also as a time for me to disconnect, unwind and laugh (and what a better way to keep stress at bay? 😉 ).

I also make it a point to stretch lightly for a few minutes every day, first thing in the morning, a habit which I recently added to my daily routine and is going good so far.

Fortunately, lupus has not affected my mobility as opposed to patients with a more severe case. And while I still need to give special consideration to my rheumatoid arthritis, hypermobility syndrome and mild scoliosis (Go home body, you are drunk), I can afford to exercise regularly.

  • Professional psychological help

I’m still stunned by the amount of people who think that seeing a therapist/psychologist/psychiatrist is a sign of weakness, that you are supposed to “handle it yourself”. Health is also mental, and it’s okay to step out and ask for help, to request a professional opinion on what you are going through – and this includes people who are in perfect physical health.

Back to chronic illnesses: 15-60% of people with a chronic condition will experience clinical depression according to the Lupus Foundation America.

Feeling constantly unwell is a tough experience, and so is the need to give up on a number of things because you are can no longer do them (physically) or because they can be a threat to your health. These two things alone are considerable emotional strains.

Besides, lupus can affect the brain, with symptoms including mood swings, confusion, memory problems, difficultly to concentrate, depression, psychosis, seizures and strokes. The Lupus Research Alliance notes that half of lupus patients suffer from cognitive dysfunction. On top of that, some medication used to treat lupus, including prednisone, can also cause depression.

Telling people to suck it up or discouraging them to seek medical advice is not only inconsiderate, it is irresponsible.

  • Journaling

Most of the content of this blog actually stemmed from some words I jotted down in a notebook at some point in time, when it felt like ‘too much’ in my head. Whether it is flowcharts for making a decision, bullet points for weighing down pros and cons, a to-do-list or just random scribbles, I’ve found out that journaling helps me see more clearly through the mess of my thoughts.

  •  Moodling!

Okay people – the book Moodle presents stressed is a little gem! It features exercises such as “Draw yourself a Do not disturb sign, cut it out and hang it to your door’”, “Write your worries on this page, make a boat out of it and let it sail away” and much more:

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While I’m absolutely terrible at drawing, focusing and moodling helps me to calm down (in the same way Mandala colouring does).

  •  Music

Besides drawing, know what else I’m terrible at? Yep, playing an instrument. I hadn’t touched a piano in three years when my doc insisted on the importance of practicing music. Back at it, I’m now learning not to feel discouraged by sounding awful, or being a slow learner, and to instead find pleasure in how my hands become autonomous and create something pretty after a lot of practice.

  • Aromatherapy

I’ve been using a ceramic oil diffuser in my bedroom and it’s definitely a mood booster! Each essential oil has properties of its own and it’s interesting to mix them for different effects (from stress reduction to pain relief). I’d recommend to ask tons of questions before any purchase to ensure you are choosing the essential oil which will suit you best, as well as the method which would work for you (diffusion, inhalation, topical application and so forth).

  • Time out

At the end of each day, usually right before sleep, I have one of those ‘time out’ periods during which I forbid myself to think about any responsibilities whatsoever and cut off contact with others. I use this ‘me-time’ to practice one of the above (exercise, piano and so on) without being disturbed. While the exact amount of time varies, I try to balance it with the pace of my life – for instance, a very stressful week at work would require one hour of time out every day, while I’d be happy with ten minutes of time out per day during vacations.

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Lupus Fatigue

d07623ad11d0c1d0d9a589be1e90e46dWhile symptoms vary greatly from one lupus patient to the other, fatigue is one of the most common, occurring in up to 80% of cases according to the Lupus Foundation of America.

Oddly enough, it’s one of the symptoms which people have a hard time understanding, leading to comments such as “You’re not the only one who gets tired” or “But you’re being so lazy…”.

So how exactly does fatigue affect me?

  • Even when I’m in a pretty good shape, my energy levels are lower than what they used to be. I can still do the things I used to do 1 or 2 years ago, but at a slower pace, over a longer period of time since I get tired more easily and quickly.
  • When I’m in a not-so-great shape, I usually have trouble completing certain tasks because I am unable to stay focused and I feel drained after a few hours of activity.
  • On a bad day, I open my eyes in the morning and know that I’m not going to make it far today. It’s like being so tired that I’m heavy and that getting enough sleep is the only thing which could remove that weight. Yet, regardless of how many hours of sleep I get, I don’t really feel rested.
  • Besides, exhaustion can cause a flare up and one of the symptoms of a flare is feeling tired. See the vicious circle?

And how does fatigue affect other lupus patients?

This of course, varies from one person to the next, but The Lupus Foundation of America has a nice article in which a few people talk about how they experience fatigue: http://www.lupus.org/resources/15-questions-fatigue-and-lupus

Fatigue is probably the symptom which is bringing about the most changes in my daily routine. So far, there are a few rules I’ve set for myself:

Sleep

  • A regular sleep pattern – a time to go to bed and a time to get up, regardless of my plans for the day.
  • A minimum of nine hours of sleep per day. No compromise.
  • A bedtime routine (such as switching off screens or drinking green tea at a specific time).
  • A minimum of one ‘rest day’ per week– I make it a point to keep one day of the week with a minimum activities or obligations, devoted entirely to rest.
  • Getting comfortable with sleeping in the bus or in the car. A travel pillow is always handy!

Pacing myself

  • Avoiding to go out on Sunday evenings, or during the work week.
  • Limiting activities on Monday afternoon, since the first day of the work week tends to leave me quite drained out.
  • Keeping lighter tasks for that period of the day during which my energy levels are at their lowest (this happens around 13h-16h for me).
  • Planning the week as if I was playing Tetris- I try to fit blocks of ‘rest’ between blocks of ‘activities’. For instance, if I have something planned for Saturday morning and Saturday night – I keep the day free so that I can have a long nap. If I’m staying up all through Friday night – then no going out on Saturday, I’ll use that time to catch up on some sleep.
  • Learning to prioritise: I cannot afford to attend all events and do all the things I wish to, especially if they occur consecutively. Some questions which help me chose are: Is it something recurring or a once in a while opportunity? Can I postpone that for next week? How worthwhile is it as compared to the other?
  • Saying no, unapologetically: Whether I know in advance that something doesn’t fit in my ‘Tetris planning’, or if I had to cancel at the last moment because I woke up that day and felt that my body was saying “no”, I still tend to feel guilty to decline/cancel something “because I need to sleep”. I sometimes have the impression that I’m letting people or that I’m missing out because of a… weakness.
    I’m still learning that putting myself first does not involve a lack of consideration for others, or that taking the time to reboot is not a waste.

The Spoon Theory

The Spoon Theory was developed by Christine Miserandino, a lupus patient, as she attempted to describe what life with lupus was like and grabbed the first thing available – spoons– to be used as visual cues. (www.butyoudontlooksick.com/the_spoon_theory)

A healthy person has an unlimited amount of spoon, but someone living with a chronic illness starts the day with, let’s say, 12 spoons. Each activity makes use of one or several spoons. Getting dressed for instance, may cost 1 spoon, cooking a meal would use 3 while going to work takes up 5. Not getting enough sleep, forgetting to take your medicine or having a cold for instance, means you have less spoons.

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Since your amount of spoons is limited, you have to be careful about how to use them, planning ahead so that you don’t run out of spoons. This theory is now used across several chronic illnesses and patients are often referred to as ‘spoonies’

While I may not use it literally, this theory was a useful tool in learning how to organise my day to effectively balance more demanding tasks and lighter ones. It also serves as a reminder that everything requires some form of attention and energy, but that not all of them are worth it…

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Getting Organised

Organisation and proper tracking have helped me to understand my condition and manage my symptoms better. Some of the things I’ve come up with include:

Health Diary

I started out a diary with four categories – Food | Medication | Others | Symptoms – which I fill out daily. Besides noting down what I eat, what medication I take or how I feel on a particular day, the ‘Others’ column help me track down those factors (such as the changes in the weather, stress or lack of sleep) which can trigger a flare. Over time, I’m starting to notice certain patterns and know what I should avoid or when I need to be extra careful.

Medication

  • Since I take medication on alternate days, I started by pinning a weekly calendar in my room to remind me which medication I had to take on which day. Over time, I got used to it and can remember, for instance, that Monday is Prednisone and Tuesday is Plaquenil.
  • I had a lot of those “Aaaaah, I forgot to take my pills today!”- moments. I now set a daily alarm on my phone to remember to take my medicine every day, at the same time.
  • I have one of those tiny Tupperware-kind of container in which I can put my pills when I need to carry around. Not to forget a bottle of water! Else, you could also opt for one of those weekly pill organisers:

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Blood tests and appointments

Lupus being a chronic condition which requires regular blood tests and appointments, I end up with lab reports, prescriptions, receipts and other papers. I keep them all organised chronologically in a  display book . This turns out to be quite practical when I need to compare changes in my blood test results over months for instance.