Kanja Mwingirwa’s Story – #LupusAwarenessMonth

I grew up happy, healthy and normal. I had a life trajectory, a plan detailing it all step by step. Life had other ideas though, ideas I still do not agree with. When I was diagnosed with lupus at the age of 23, I thought my life had turned upside down. Now I know for sure that it turned upside down on that day. However, with the advent of modern medicine and a strong support system, I have been able to live a somewhat normal life.

It started off as unshakeable fatigue, the kind of fatigue I simply cannot explain. The kind of fatigue one can’t shake off even after hours of sleep. At 23 I didn’t know how to tell people I was always tired. But really, I was. Little activities drained the energy out of me. I remember dreading the bathroom and wearing shoes that had laces. My back hurt, my neck, my shoulders, my arms…parts of my body that I didn’t even know I had hurt. It was strange to me..all this pain. I was supposed to be young and energetic. The adjective that people typically used to describe me before was ‘bubbly’, this wasn’t bubby, this was pain. This was fatigue. This was the new normal. This was lupus.

It’s been three years since my diagnosis. I have been through more than I want to remember, but I’m still here and I’m still fighting. The pain hasn’t subsided but I know how to manage it now. The fatigue is not as bad as it was but only because I realize now that I should do light exercise not sleep all day. I will live to fight another day.

~ Kanja Mwingirwa

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Waithira’s Story – #LupusAwarenessMonth

I am so glad that devices today have the option of speak-to-type icon. My fingers are so swollen, I cannot type. I am currently going through a bout of Costochondritis which for some reason is not responsive to the steroid shot that I got a week ago and the NSAIDS I have been put under. Today my Prednisone dose was increased to 40mg. Excuse the fact that we were tapering before the flare came in uninvited.

This has been my life for the last 16 years though I only got the Lupus diagnosis 3 years back. Before then, I dealt with Rheumatic Heart Disease and Rheumatoid Arthritis which I would say I had learnt to deal and live with quite well. I wore it too damn well, if you ask me. I never knew much about the diseases and maybe that is what kept me sane.

It’s different today. I know too much. I spend my spare time reading medical journals and writing to different facilities just to see if I can get more answers. Some will respond, others will not.

God forbid that you see my file. It is full of my notes. Why? Because I do my own research before I go to the doctor’s, make my diagnosis and a list of medication that could probably work for me. In my thinking, I am easing the doctor’s burden but in real sense, I am just trying to get a footing into a world that I do not know how to tread.

I have my family and close friends but I am extremely lonely or maybe I feel alone. I do not know which one it is. Maybe I should consider keeping a pet but I’m not sure if I’ll always have the energy for my pet- a feline most probably. Today is one of those days that my mother had to clean me, dress me and help me feed because the pain is excruciating.

I wish I could find it within me to cry but after 16 years, it does not make sense to shed tears anymore. I almost feel like I am accustomed to pain. Pain is my kind of normal. I take it as it comes and when it is too bad, I hope the good Lord will give me sleep because sleep heals one.

I want to love and to be loved. But very few strangers accept me for who I am. “You walk too slowly” or “You spend too much time indoors” or “You cannot get a boyfriend if you are always stuck in the house” and the mother of them all, “ Is the pain that bad? Try creating a thick skin to pain.” My threshold to pain is already high. If you have a problem with my speed, that’s fine but please reserve your comments. I fight everyday, fighting an invisible war against a visible Goliath.

#ILiveWithLupus

#ILiveWithLupus – April 10, 2018

What should I eat?

One of the first questions newly diagnosed Lupies will ask me is, ‘So is there a specific Lupus Diet I should be eating?’

My answer. Eat a balanced diet. Drink enough water. Do not overdo sugar, salt and fat, and avoid processed foods.

When you go online, you will, of course, find conversations that talk about foods that COULD make a person with autoimmune disease flare or get inflamed. You’ll see pointers towards nightshade plants – potatoes, tomatoes, peppers, eggplants, etc -, foods that contain gluten – wheat, barley, rye, therefore breads, pastas etc -, dairy products, alfafa and supplements that are meant to raise your immune system. So should you avoid these foods? Probably. How will you know what to avoid?

The first thing that will help you make your decision on what to exclude from your diet is a basic understanding of what autoimmune disease is.

Autoimmune disease is a condition where your body begins to develop immune responses against itself. Usually the body creates antibodies that target foreign cells that have invaded the body. In autoimmune disease, auto-antibodies target the body’s own cells and tissue, resulting in inflammation and systemic failure.

Your diet should ideally not encourage your rogue immune system to grow, while providing you with needed nutritional support. In this particular case, it would be wise to avoid dietary supplements and herbs that activate the immune system.

Your diet should also not increase the inflammation in your body. If you notice for example that you have constant gastrointestinal issues eliminating dairy products might help. If efforts to reduce joint pains are nought, you might consider examining your consumption of nightshade plants as these might have a hand in the situation.

Your diet should also consider the medical regimens you are receiving to control your autoimmune condition. Some drugs deplete Vitamin B12, Folic Acid and make it harder for you to absorb Vitamin D and Calcium. Your diet should be the primary source of replenishment before you have to use prescribed supplements. Leafy greens and fruits are a very important ingredient.

In the end, however, you will have to tinker around until you figure out what is right for you. You will definitely not want to go with popular fads, you can’t afford to be cool. Sometimes you might have to resort to unconventional ways of eating and if you do, there should be no shame.

Most importantly, READ. Read up on basic nutrition, then read on nutrition for immuno-compromised bodies. Talk to fellow Lupies. Find out what the options are, combine that with what you know and work at figuring it out.

#ILiveWithLupus – April 8, 2018

On Bad Days

I have always felt that there is a bit of a hole in the chain link fence of awareness campaigns. See awareness campaigns pose patients as warriors and survivors, and this has the very well meaning intention of offering hope and encouragement to those living through disease and disorders.

Unfortunately, to the individual living every day with a disease or a disorder, not every day is all smiles and psyched up with hope and confidence. Some days after we have been battered by pain and illness, and the added challenge of societal dysfunction, some days we don’t have our swords, spears and vibranium shields lined up. Some days, we crawl into dark closets and sob until we pass out. Some days we are too weak to even get up out of bed in the morning to face the day.

There’s nothing wrong with having bad days, with having days when you doubt your very essence. Unfortunately for persons living with autoimmune and chronic illness, we often have more bad days than good.

Our overcoming the challenges we face, the essence of our spirit of survival and courage in battle is in the fact that we hold on one more day, breath in and out, even incredibly smile during the worst of times… We are warriors and survivors because in this moment, we are.

Truth be told though, I wince inwardly every time someone says to me, ‘But you are a fighter, you’ll make it!’

Of course, I know I will, but right now I am in so much damned pain that I am trying to live through. I try to consider what I would say if I stood at someone’s bedside and they were in pain. I think I would acknowledge their pain, and if I couldn’t figure out what else to say, I’d be quiet rather than gloss over their pain at that moment.

I’ve discovered something that encourages me without putting too much pressure on me. My friends simply come and hang around doing normal things, like cooking or, this one was special, playing music, with actual guitars and all. And when its days that I can’t sit up and ‘warrior’, they don’t make a big deal of it. And when I can, I go out of my way to be there for them, or to be there for someone who needs it even if they are not my friends.

Don’t doubt your friend or relative’s strength and courage just because they are having a bad day. And please don’t gloss over their every day challenges and pain.

April /May Lupus Awareness Season

I am so excited about the April / May She Blossoms Lupus Awareness season. Just in case you are wondering, the topic this year is #LupusStories and #ILiveWithLupus, so send us your stories! Tell us about your challenges and victories! And if you’d like to volunteer or support the campaign, please inbox me Juliet Maruru or WhatsApp me 0725758389. (No Calls).

In the meantime, do you recognize these symptoms?

#ILiveWithLupus – April 3, 2018

New Normals

I don’t know if I am weird because I have been ill so long, or whether I would be weird anyhow. I’m the child that the entire family isn’t ever sure of.

This one time, I accidentally told on my brother and stepbrothers. I had no idea that what they were planning was bad, or that the folks had no idea about it. So I asked to be included, at which point I outed my brothers and I guess they were punished.

To get back at me, the next day my teenage brothers locked 5 year old me in a study that only had books, an old phonograph, and Classical and Operatic Music records. (We used to live in a house that was once occupied by some old kaburu and for some reason he left his stuff behind when he did the mzungu arudi kwao). ANYWAY, books? classical music? All the tenors? I was in heaven!

Years later, I have stumbled through my life trying hard but failing spectacularly at being normal. Being weak and sickly hasn’t helped much. It makes me even more awkward and gives me the worst social anxiety. It can be a little lonely, because sooner or later you’ll start to notice that you get chosen last, or no one wants you on their team at all.

But its also awesome because your loneliness pushes you to develop these other skills that make you invaluable in certain cases, and often you meet other people just like you, or people willing to accept you with all your quirkiness.

The thing I have been working hard on all my life is to listen to people, be kind to them, and make sure I never hurt anyone the way I have been hurt. This can be hard when you are terrible at reading cues and body language, but I work at it actively.

I started writing this update because a 14 year old friend of mine told me that I’m awesome cos I’m weird. It got me in the feels and off he went with half my collection of graphic novels which I almost never lend to anyone.

Have a great April.

#ILiveWithLupus
#BooksDriveMeWild
#AlsoPlacidoDomingo

#ILiveWthLupus – March 22, 2018

Food. Shelter. Clothing.

I haven’t written much to my name in the last few years. When there’s a direct line from a client’s bank account to yours, you can get pretty awesome at writing other people’s stories – Fiction or Nonfiction. What I write under pseudonyms sells just enough to send back a couple of euros every few weeks, and I doubt it would do any better if published under my government name.

But I loved my work. All of it! Keeper of social media account passwords, writer, researcher, editor, marketer, teacher assistant, remedial tutor, creative writing instructor, mover of furniture, taster of recipes, first ear of friends’ music, first reader of friends’ manuscripts… ah, I get carried away! I love life, art and love 😎

But by September / October 2017, I could hardly remember my own name let alone work out my daily meds. And so I took a step back rather than let clients down, or disappoint friends. It wasn’t really a choice, more of a stark realisation that I wasn’t all there and my body couldn’t handle it.

There comes a time in a Lupus patient’s or chronically ill patient’s life when your body just cannot support your need to work, the things you love, even when for example, you rely on these to earn your living and / or support a family.

Losing your ability to earn a living can be devastating for many reasons. One, is of course the straight forward – where’s the food, shelter, clothing going to come from? You’ll worry about paying for your own medical care. You’ll feel keenly the loss of identity attached to your work.

I mentioned my writing first because I made a decision to earn money from my writing in a way that didn’t give me recognition beyond a paycheck. It took a while but I accepted and appreciated that the paycheck helps to make the ends meet. There’s really no shame in that, though I have doubted myself countless times in the last few years.

I am, therefore, not new to the idea of a shaken concept of identity when it is based on creativity and intellectual rights. Having to give up my job(s) because my body couldn’t handle it felt like a distant second compared to the first. But imagine countless others who have to step off the plate of being doctors, nurses, teachers, chemists, chefs, architects, farmers, pilots, military men and women, sometimes even from being fulltime moms and dads, and you can add to this endless list!

While insurance, early pensions, disability packages, side investments etc can help make the impact less, more likely than not, many are found unprepared when chronic illness strikes. Many struggle and flounder for years, hoping that the flare that finally floors you will be staved off forever. Many die on the treadmill, having spent themselves to the end. And many more have to watch their bodies fail them, their jobs and lives slowly sail past, often their families crumble and when they do not they carry the heavy load of keeping and caring for them.

Yes, I have painted the darkest nightmare of any one facing autoimmune or chronic illness.

We can talk about it.

#ILiveWithLupus
#LupusAwareness
#AutoimmuneAwareness