Lupus and My Mind

Whenever I’ve tried to trace my illness as part of my conversations with my doctors, my mental health therapist, or just with my mum, I can tell that my symptoms started in infancy, probably even while I was still a foetus. Whether some of the phenomena is what developed into autoimmune disease, or simply made me susceptible to autoimmune disease is up for debate. It’s been a long journey.

Even so, my health has deteriorated a lot in the last 7/8 years. Between disease progression and side effects from medications a lot has changed for me including my physical appearance, fitness levels, mental health status and general outlook on life. Finding acceptance is a day to day, and often, uphill task.

This past weekend I attended an event that has in the past meant long hours sitting and listening to speaker after speaker, intermissions where opportunity to make new connections and invariably run into old connections, lots of photo sessions and so on. In the past, I’ve loved every minute of it.

In the run up to the weekend this year, I found myself worrying about things I would never have given a thought to 3/4 years ago. I worried about sun exposure, pain levels, exposure to infections, discomfort from sitting too long, dehydration, skin issues. All these had fixes or at least some kind of mitigation with early preparation. Sunscreen, pain patches, face mask, special seat/cushioning, moisturisers, and other little things that help people with autoimmune disease cope.

I did not, however, expect the sudden dread that hit me on the morning of the first day of the event. The dread of meeting with people who knew me in a different time, when I was younger, a fitness fanatic, super active and most definitely not as battered by Lupus and other autoimmune diseases as I am now.

I did not expect this feeling. I did not expect how strong it was. And when I fought it and made my appearance, I did not expect that I would be so preoccupied with the changes Lupus and autoimmune disease have made on me that I would almost hate the socialising part of the event.

I noticed old friends faces when they recognised me but were also shocked by my weight gain, my moon face, my inability to walk properly. I noticed the old friend who walked up to a group of friends and greeted everyone enthusiastically by name, but then wasn’t sure if it was really me, so she introduced herself. I noticed the old friend who had heard I was unwell but had no idea to what extent so when she saw me she just felt awkward. I noticed the old friend who came at my illness like she could fix it and ended up saying all the wrong things. I started carrying the burden, like I could make it all better for them so they didn’t have to deal with my being ill. That was exhausting!

And then there’s the comparison aspect of reunions. People try to be kind and respectful, but as they introduce their husbands and kids, you see them look around for yours. And even though I know as clearly as day that my reasons for not having a husband and kids have nothing to do with Lupus, a weird part of me associates my rather different life path with the turns illness has forced me through.

At some point, I retreated to what turned out to be a quiet place where I could watch but not interact with people. By then my mind was in a deep dark space. It took everything to reach in and pull out the positive coping skills I’ve been learning.

I attempted to spend an afternoon immersed in the beauty of african fabric prints and interpretive fashion design. I’ve never seen so much colour! And the hair! I witnessed so much genius in hair design … and then I started thinking about how painful it would be for me to spend the hours it takes to wash, dry, straighten, oil and design my hair into anything let alone any of the braid and knot designs I was seeing. Then I thought how much fabric I could buy, how many outfits I could have made for me with the cash it cost to pay for my monthly medical care.

Why stop there?

I thought about all the things I have wanted to accomplish but have either had to abandon, delay or change plans for because of illness. I thought about relationships, romantic and not, that have ended or been destroyed by issues directly related to my constant illness. I lingered long over the memory of the man I thought could be a life companion. I doubt that our relationship failed so spectacularly because of Lupus. That failure had had a lot to do with our personalities and our priorities, but Lupus and all the changes it made on me cemented the end.

Of course, I have discussed all these things with my therapist, and if you’d asked me on Thursday I’d have said I was finding acceptance and finding wholesome ways of coping. But by Sunday I was unravelling.

I don’t know how much of my mental health challenges are independent of or caused by Lupus or any of the other autoimmune syndromes that affect me. Either way, I know my mental health affects my autoimmune state by either helping me cope better, or by creating stress states that can trigger flares.

If I zoom out, I am not surprised by mood flares. Over time, and lots of help, I have learnt to recognise the bad zones and been equipped with basic skills to help me get out. That’s not to say that I won’t find myself coming too close to black holes as I did this weekend. And some of those times I will need a bit more help to right myself. But once I recognise a pain zone, here are a few things that help me :-

• Rest. Fatigue can impair my thinking, so resting is an important part of healing
• Write down how I feel, and attempt to identify why
• Listen to uplifting music
• Light exercise / walk with my dog
• Breathing exercises
• A shower or bath with scented soap
• Read a book I’ve been looking forward to reading
• Talk / spend time with a trusted friend

Sometimes, my basic first aid kit for mental health won’t work, so I know to call my doctor or therapist and go in for care. My family and a close friend are also able to tell when I’m too close to a black hole and can either support me through the first aid phase or make sure I get help when it is definitely time.

Part of accepting my autoimmune condition, has been learning to accept the mental health components of it. That’s what this past weekend has been about.

My Kind of Tired – Living with #Lupus Fatigue

My mother reminded me that in my teens I used to wake up at 5am so I could be done with housework before the sun went up and fatigue hit me. I used to have pretty bad fatigue but it is nothing compared to what I experience now.

Chronic Fatigue is a common denominator in most Autoimmune disease. It can exist as a symptom of Lupus (or any other autoimmune disease), as a side effect from medications, or as a completely separate autoimmune adjacent chronic illness known as Myalgic Encephalomyelitis or more commonly Chronic Fatigue Syndrome.

During the early phases, even before they have figured out what is going on, most patients learn to compensate for this debilitating aspect of chronic illness. So for example, a young woman will rush to complete the housework before she gets hit by the complete and utter fatigue. A young career person will figure out when the slump hits them during the day and work around it.

Even so, chronic fatigue is noticeable. It is generally dismissed as laziness, as the girl who sleeps too much, the boy who never follows through with his responsibilities.

In truth, the person living with chronic fatigue is quite likely not dismissive of their life roles and responsibilities. They are always trying to catch up, probably hoping people don’t notice how hard it is for them to keep up, dealing with frustration and feelings of inadequacy that can lead to depression.

The kind of fatigue I’m talking about here is not the kind that can be fixed with some rest. It is a chronic exhaustion as a result of the body being in constant combat mode on a cellular level. It is the kind of fatigue that leaves you completely drained, without the energy to even lift a glass of water.

As autoimmune disease progresses, the bouts of chronic fatigue become more severe. Patients have difficulty eating, brushing their teeth, showering, changing clothes etc. Leaving the house becomes a monumental task. Lining up tasks or errands requires herculean effort. Keeping up with life, friends, responsibilities and goals takes everything.

Living with chronic fatigue requires planning so as to avoid over-extension,  planning for adequate sleep as well as mini rests between tasks, and the ability to ask for help and hopefully, supportive family and friends who can help during the worst of it.

Persons living with autoimmune diseases get reprieves in ‘good days’ or sometimes longer periods known as ‘remissions’ when disease activity is low. During those times, the chronic fatigue may lessen and the person may be able to do more.

During those times, patients must remember that the goal is to keep disease activity low for as long as possible. Therefore they should keep up with their daily medications, avoid risks such over exhaustion or sun exposure, eat healthy, drink enough fluids and live a generally positive lifestyle.

What do you do to cope with chronic fatigue?

#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.