2017 has been a hard year. I’ve felt so much more pain and discomfort than I thought I could bear. I’ve had so many thoughts, crawled to the bottom dredges of depression, pulled myself over the barrel and forced myself to walk home. I’ve spent days and long hours in hospital. And there’s days I was sure I wouldn’t make it. I survived. And I still keep surviving until the end.
One of the first coping mechanisms encouraged to any autoimmune patient is to journal. Not only is it therapeutic, it can also help you track symptoms, notice patterns in flare up, identify foods and circumstances your body is intolerant to, et cetera et cetera.
Since I committed to raising Lupus Awareness, I find that I post a lot of my journey on social media. This, however, is a lot different from my private journal, where I track minutiae including meals, exercise, pain levels.
It has taken me a lot to admit fear, anxiety and sometimes absolute panic at the various situations and decisions that I have to make every day with regards to coping with living with 5 autoimmune conditions. But I realise that often sharing my emotional discomfort is not only liberating to me, but reassuring to someone else going through the same. So I keep on sharing, mostly on Facebook, but occasionally, I thread on Twitter too.
I just wanted to save some of those thoughts from 2017 here.
1. Today when I’m so tired from fighting yesterday and everything still hurts, I need to read this note.
Maybe I know a few people needing to read this. Stay strong Spoonies. We can do it. #AutoimmuneWarriors
2. When I had to speak at a Girls Mentorship Event: I’m a little nervous about speaking to young women about what it would take to go on and forge a career if one day a doctor told you you’d be sick for the rest of your life. So far my notes have involved a lot of self doubt, rethinking, explosive diarrhea and that awesome night in New Delhi. It’s been AWESOME!
3. We had a laugh with doc over this yesterday. That I’m structurally well, but clinically very sick. My lab test results have been a little all over the place. Just two months ago I was celebrating hints of remission. I cannot be angry about this, although I am quite frustrated. #LupusLife #LupusAwareness #SjorgrensSeason
4. I’ve been talking about crossover autoimmune diseases. I’m in Sjögren’s/Lupus season. Dry eye, dry mouth, severe dehydration, fatigue, inflammation, pyelonephritis, pancreatitis (this last one hurt like a mother!).
The effects of Sjögren’s are so extensive I probably can’t list them all. Let’s start with inability to control body temperature (because no sweat), teeth decay and breaking (yes, teeth just crack and fall out), hyperacidity and gastric reflux (can become ulcerative because of mucosa dryness), painful sex for women (no lubrication na huko), organ desiccation leading to dysfunction such as gall bladder blockage and pancreatitis, joint pain because no synovial fluid…. I really can’t go through the entire list here.
But it explains why I’ve needed intervention since my Sjögren’s symptoms flared a month or so ago. Much of it has been in the form of pain control and rehydration and electrolyte balancing.
I’m glad I have a team of doctors both here and in India that cares to explain what is happening to me. When you are in pain, fear is your worst enemy. Understanding what is going on can give you a semblance of control, and give you a chance to regrasp your hope and faith.
Support is a huge deal, and I am eternally grateful for my mum’s levelheaded support.
5. It occurs to me, that even when a person living with #Lupus is not ill (in flare), they are still quite busy managing Lupus.
A person, that I promptly pushed to the periphery of my life, once laughed at me for ‘faking mzungu-ness’ because my mother and I were talking about having a hard time finding a #sunscreen cream that was both strong enough and didn’t make my skin chalky but one I could also afford. And this was after she came to ‘spend the night so we could explain this Lupus’.
Oh, shoot, mixing narratives. Some of the things Lupies have to do, some of the fears we live with, are very real, based on facts, built on experience.
I am terrified of indoor lighting that emits UV rays. While in India, I got incredibly ill and the doctor asked me about the lighting at the hostel we were staying at. She explained that what I was experiencing was UV sickness either because I went out in the sun too long or because I was exposed to UV lighting. In essence, my body is super sensitive to UV rays and has a hard time dealing with cells affected by UV rays.
When we came home, the first thing I did was change the bulbs from the light saver bulbs which emit more UV rays to the yellow bulbs which make my electricity bill look like my phone number.
All these precautions just to minimise the pain I live with every day. And sometimes, even after working so hard, we still get whammied by Lupus flares.
6. So, I know fellow Lupies will prob look at me with side eye because living with Lupus is accepting pain, but aki this weekend me I have prayed for this cup to be passed from me. So there’s the fever and the things paining in my stomach or general torso and flank area, sijui internal bleeding at biopsy sites, my hip decided to ache this weekend, then Raynaud’s pain both hands and feet.
Emotional yoyo from ‘I can totally ace this’ to pain rage, and sit in the closet and weep despair, then back to ‘Lupus is not winning!’. My dog is just whining and my cats have lined up kwa corner to watch pain madness.
Oh, I have 3 cats now. Fluffy Cat – my beautiful princess baby who does not deserve this stress, Coehlo cat – whom Guillermo adopted from his walks and forced on us, and Snowy cat – maybe his other family has gone on holiday or something.
7. Tumefika hapa.
The good thing is infusions are 3/4 hours max unless I need saline or Ringers. My veins have refused the longer lasting port so we basically have to start a new port every day, and because the prescription is for roughly a month I don’t qualify for the permanent port. #LupusLife
Doc was lecturing me on being thankful for everything cos I was whiny today when they had to go for the leg veins. But I can’t wait for this thing to go into remission SOMETIME SOON! That and Isaiah 33:24, mayne. Anytime. Anytime, and yet not my will…
8. Doc and I (the other one, who wasn’t my doctor) used to joke that the reason I survived Lupus fairly well, and bounced back from most flares, was because I have always been able to eat, therefore, take in nutrients. There was a downside because I would gain weight from glucocorticoid hunger.
If you don’t eat when you are on steroids, you get weak and shaky pretty fast, which is why most people try to cheat with soda. Soda is, sadly, just as bad as eating a fatty meal. You’ll gain weight, and diabetes. The trick is to get your body used to eating healthy but often, so you can maintain your sugar levels without gaining too much weight. But you’ll still probably gain water weight, and likely not lose existing weight.
About my digestive system, the lesson I’m learning now is that all body systems are quite fragile.
9. Being chronically ill might mean numerous hospital visits, being prodded this way that, and wondering which pair of underwear you are wearing because a. hospital robes are wide open no dignity and b. sometimes emergency procedures mean you end up near naked with either a catheter up your bits, bloody painful lines in your femoral artery (thigh), or pipes down your throat.
I’ve thought about underwear a lot this week. #LupusLife
10. It is always a cold reminder of our own mortality when a fellow Lupus warrior completes their battle. So I understand when Kanja Mwingirwa says she hàs no idea what to feel. Emily fought hard, lived her life as best as she could. She is now no longer in pain and lives in the memory of the God of all Comfort. And now, its our turn to live brave and strong.
11. Today was about surviving today. I’ll deal with everything else tomorrow. Or maybe the next day. Who knows, next week maybe?
In other news, I think my stomach is in my lungs now. #Methotrexate #LupusLife
12. Time moves so fast, so slowly. I need PT once again, Costochondritis and Pelvic Inflammatory Disease makes even walking a few metres incredibly painful. This on top of all the other #LupusLife manenos. I’m like that couple in the gazebo waiting for their little girl to come back, except I’m waiting for my health to come back. #Hope.
13. I live with pain. I bear pain in many forms. From constant inflammation. From new inflammation. From fibro neuropathy. From idiopathic headaches and migraines. From injections and procedures. My arm has been swollen and painful from an injection I received to stop an acute pain crisis. Ridiculous. I often have to undergo painful infusions and procedures in the hope of some kind of relief. Most of the time it doesn’t feel worthwhile but you try anyway. This is the life you live when your body is actively trying to kill you. You soldier on until the battle is over and the war is won. Whatever happens. #LupusAwareness
14. I have had to teach myself to be grateful for the small things, for the kind gifts, for the tiny blessings. Saying thank you to those who care for me, or simply keep me company. I say thank you to orderlies, nurses, doctors, bookshop assistants, ice cream palace girls… I say thank you at home, to mum for every little thing she does, and to Jo Jo for making sure I eat, take my meds, to Guillermo and Fluffy for making me smile, and for sloppy kisses. I say thank you every day for the gift of life. I feel that the beautiful things that come my way, however little, however few, are more than enough to offset the pain or discomfort I may have to live with while I battle #Lupus. So, THANK YOU.
15. A few weeks ago, my immune system tanked. On the one hand, I am still positive for ANA at a high titre which means docs still have to control that, on the other, I had septicemia which was not responding to drugs at first and my body was not producing the soldiers meant to help fight it. I’m exhausted from living with the infection for about 7/8 weeks, in and out of hospital, full day hospital visits, one scary emergency episode but finally today my blood came back negative for anaerobic cultures. Everything still hurts right now, and I’m still a long way from upside up. But we keep going, we keep thankful, I keep fighting. #Lupussucks #LupusAwareness
16. We live in interesting times, and there are probably more important things to think about just about now. But my hair is falling out and I’ll prob need to use my chemo cap again. Also, everything hurts. #Fibromyalgia #Lupus #WhatsNext
17. I keep thinking I’ll get used to new symptoms cropping up. I’m always praying for old symptoms not to come up again, but part of being in a #Lupus flare can be symptoms playing musical chairs. Now all I’m praying for is the strength to bear up with grace and never lose my hope in the face of constant physical pain, and both emotional and physical fatigue.
18. If there’s anything I am terrified of when it comes to being diagnosed with CNS Lupus is that it might or may already have led to symptoms such as Lupus Psychosis. I can deal with pain, kidney failure and all other symptoms related to Lupus. But this one scares me. How do you trust your own thinking, your perceptions, your world…?
19. Chilling with the dude post methotrexate.
20. I feel like I’ve been posting variations of ‘stop the shame’ with regards to mental illness since Chris Bennington got to the end.
Since it seems I have decided to take on the Internet’s, let me try. Not all physical illnesses are fixed by pharmaceuticals alone. It takes proper diagnosis, and then an actionable plan that doctor and patient work through together. (Yes, Serah Wanja, Amakove Wala, Kabugo, am I right? Psst – I know doctors!)
So when someone says depression is not something you can just pull yourself out of, they mean Depression is not just a sad little funk when things don’t go your way. Depression and many mental health disorders are actual illnesses caused by chemical and hormonal imbalances in the body. Some of the way they manifest is in prolonged sadness, inability to function, alcoholism, drug abuse, other behavioural issues. Even worse in my opinion is high functioning mental disorders where the person seems fine but is suffering mental anguish.
Yes, you need a proper diagnosis, from a mental health practitioner, and on some cases a psychiatrist who by the way, is a fully trained medical doctor capable of assessing your brain functions and chemical processes. (Lukoye W’Atwoli – I know doctors).
Then an actionable plan which may or may not include pharmaceutical intervention but definitely requires cognitive support and therapy.
So yes, that is what the lady meant when she said depression is not just a funk you can just wake up and shake off.