A Day in the Life with Sjogren’s

posted in: chronic illness | 5

This post is part of the World Autoimmune Arthritis Day 2014 Blog Carnival. The theme of this year’s WAAD virtual conference is “A Day in the Life of an Autoimmune Arthritis Patient”. A link to the WAAD site follows this post. Blessings, Jane.


A Day in the Life with Sjogren’s

A Little Rain Must Fall © 2012 Jane Waterman
A Little Rain Must Fall © 2012 Jane Waterman

I wake with my hands curled like claws and my shoulders shooting with pain as if I’d been pounding a punching bag in my sleep. As I experimentally unfurl my hands, I become aware of several things at once. My eyes feel like a desert and I experiment with rubbing my eyelids. Nothing results, but the clicking sound of my eyes moving as I glance around the room.

My sublingual glands still work a little, so there’s a pool of sticky saliva under my tongue. Dryness increases as one ages, so one day I won’t have that luxury. My parotid glands are about done though, and I feel like someone who forgot to put their dentures in – my cheeks smacking the dry spaces between my teeth. It’s somewhat real because I’ve lost several molars already. I can’t afford to save the ones that survived due to dental work in my youth, which includes a temporary stainless steel crown that’s lasted about 11 years now (it’s only needed to be glued in once!). Sometimes I think about the folly of not getting my teeth professionally cleaned by a hygienist at least every 3 months, but it seems a moot point now. It’s only a matter of time.

My tongue is swollen and ulcerated on the sides, and I’ve managed to bite it several times in my sleep. My throat’s sore, as it’s been every morning since 1993. It’s a little worse today because last night I splurged on my favourite forbidden food: garlic bread. Garlic is a food that increases dryness. As a result, I spend a lot of time clearing my throat, which wakes my better half up.

Emerging into consciousness

I usually wake between 8 am and noon. It all depends on what kind of night I had: whether fibromyalgia pain kept me awake or racing thoughts about the future now I’m between jobs. At least I don’t spend much time in the past in my nighttime travails anymore. Sometimes I’ll dream about things as they once were, but I don’t wake with regrets. Many dreams seem to end with me pulling thick ropes of saliva from under my tongue, or with my teeth crumbling and falling out. A hygienist once told me the latter forewarned death in her country, but I dismiss that notion, as I would have killed a legion in my sleep!

Failing to prepare

I put on the kettle for my beverage of choice: hot water. I have a bowl of cereal, and the cold almond milk feels soothing on my throat. The throat clearing is a little less explosive. If I’ve forgotten to have some water first, or if I’m not mindful as I start my day responding to friends on Facebook, I might inhale a fragment of bran flake and start choking. Unlike many others with Sjogren’s though, rarely does the choking last, as my body reacts with a huge dry sneeze as the air hits the back of my throat. If I’m not fast enough to grab a tissue, I spray a fine mist of flakes over my monitor. It’s not pretty.

Another common reaction to the sudden desperate trapping of dry air is hiccoughs. I find that amusing. Many Sjoggies (people with Sjogren’s) talk about the coughing, but I tend to start hiccoughing instead, sometimes barking like a harp seal, until I’m able to sip enough water to get it under control. If I have a bad hiccough episode, I can have several more that day. I once asked other Sjoggies about the hiccoughs, but no one exclaimed, “Me too!”, so maybe I’m just weird that way!

Preparing for the day

After breakfast, it’s time to get serious about my day. I need to get my joints, hands, shoulders, eyes, nose and mouth warm and lubricated, so I get into the shower. I have eye drops and gels for the purpose, but I often maintain my parents’ stoic refusal (it’s not a conscious choice, just a nod to years of modelled behaviour!) to address pain or discomfort with more than a couple of Panadol – Tylenol for my North American friends. I let water splash into my eyes and mouth, and I gently inhale and blow out water as an ENT specialist once suggested, many years before my Sjogren’s was diagnosed and I was being treated for sinus infections.

Medicine

I take my pills for the day. I’m unable to take prescription medication to lessen my symptoms as many of the treatments of choice cause a catastrophic worsening of my depression. So I take Moducare, an immune support, which halted my increasing bouts with pneumonia and bronchitis and is my main “insurance” against the disease. If I don’t take it, the sore throat begins to advance to the bronchial tubes. If I feel an infection coming on, I might use saline spray or colloidal silver to prevent it from moving into my dry lungs. I also take Prozac, as I have for most of the past 23 years.

I take omega-3 fish oil, which I think of as insurance for my brain. I need to keep the neural pathways lubricated too, as I fight a brain fog that was expected in my seventies, but arrived in my thirties instead! I also take calcium, as my early emergency hysterectomy due to PCOS (polycystic ovarian syndrome) means I’m a prime candidate for losing bone mass young.

I’m just glad I don’t have to waste any precious energy seeing doctors lately except for Prozac and Tylenol 3 refills, due to their steadfast belief that my quality of life is fantastic!

The order of business

If I have energy and it’s a good day, I get dressed because getting dressed shows I mean business! Once it would have meant working in my home office on my freelance technical writing and editing work, but I’m between clients now, so my good hours must go to finding new work.

Months ago, when I was going through the worst of my breakdown, I wasn’t able to do that work much (probably why I’m between clients now), and often I’d have to rest. As proponents of the “spoon theory” know, living with autoimmune disease is a crash course in energy management. You can borrow from the future at times, but sometimes you’ll pay tenfold for using more energy than you have.

Just one thing

About a month ago, I made the decision that my day was going well if I could achieve “just one thing” with it. In a world where people often achieve 6 impossible things before breakfast, it might seem lame, but I gathered some joy in my day each time I could do just one thing. Sometimes It would be a walk with our two beagles (who were used to the luxury of an almost daily walk late last year, but I’m in a flare so it has to be every two or three days now). I console myself with the thought that at least they (and I) get out that often and see something other than our colourful four walls. Sometimes my “just one thing” is enjoying the brilliant colour palette on our four walls!

Movement

If our “just one thing” is a walk, we’ll drive to the beach, the river, or the forest, and walk up to an hour sometimes. I love breathing the outside air, and if it’s chilly, my lungs bite and feel really alive. I gulp up the air like a drowning woman. Many times I have to come home and rest, and sometimes sleep a few hours if it’s taken more than I had to give. At least in the winter I don’t have to contend with the extra penalty of UV exposure (even with solar combat gear), which demands at least 2 hours sleep as payment, as my body’s cells presumably recover from the assault.

I once complained to my internist – who said I should walk every day (perhaps unaware of the “just one thing” rule and the consequent loss of several potentially “good” hours to rest) – about the cost of the pleasure of walking. I asked why it should cause me to crash so badly and need to rest and often sleep. He said it was obviously what my body needed and just to go with it. That’s just one thing a person who doesn’t live with invisible illness doesn’t get:  the disappointment of the bone-crushing fatigue that eats away the scarcity of “good” hours given us!

My normal is not your gentle

Once a week we go to yoga with my teacher, who has recently offered a modified class for me and my better half. Yoga class becomes my “just one thing”. If we throw the dice and do grocery shopping afterwards, I really play with fire! I once did a gentle yoga class and ended up in pain for 3 days afterwards, so I’ve learned to be wary of the words “gentle” and “yin” applied to a yoga class because for a healthy teacher, that just means turn the intensity down for an otherwise healthy body! It’s also why I dream of one day teaching yoga to people who can’t get out of bed or a chair, beginning with that fundamental and most difficult thing, the breath. A yoga day will usually help quell the depression and anxiety that seizes my body at times and I’ll leave tired but calm. Of course, I must pay the penalty, and I usually have to sleep afterwards!

Productive time?

When I wake up from my afternoon crash, I often have a couple of good hours (interspersed between more rests) to keep working on building my business. I also indulge in my favourite and only bad habit (chocolate), which seems to be the only thing that brings pleasure to now muted taste buds. I try not to think about the added threat to my teeth as I enjoy it. My inability to smell or taste well is also the reason I’m often the one to do yard clean-up after our dogs. For me, in the winter, it’s just another reason to inhale air gratefully, as I pace out the steps between “treasures”!

Remains of the day

Usually I’m too tired to make dinner, and more often than not, my wife makes sure we eat well, with fish and salad and rice for dinner. We might watch a few shows on the Internet as our bodies prepare to crash. My wife has fibromyalgia too, so she knows the rhythm well. Once a month or so, we’ll get to socialize with a friend “in real life” for a few hours, which, while exhausting, is a reminder that we still have a connection to “The World”.

I often try to stay up late, trying to claim some useful hours, but the quality of those hours is usually too poor for serious concentration. I end up reading or playing a puzzle game if I’m up to it. Sometimes, I just crash almost immediately, too tired to worry about the future until I start waking up a couple of hours later.

The night watch

I count the night hours by the light of my watch face (which must have a glow-in-the-dark function so I can orient my insomnia), the changing shades of the sky, the shifts of aching bones and shoulders as I try to get comfortable on the bed, and the headache that sprung up somewhere between sleep and the dawn. When I open my gritty eyes the next morning, it’s time to do it all again!

Blessings,
Jane

World Autoimmune Arthritis Day 2014

5 Responses

  1. Maree
    | Reply

    Hello Jane. I’ve been working out which of my big bag of symptoms beginning in early childhood are due to Sjogren’s and which are unrelated. The more research I do the more obscure details I discover. I have been waking with my hands in claws and wondered about it. I didn’t mention it to the doctor. Sometimes several of the fingers hurt when I unfold them. They’re all quite weak these days. I’m grateful that you included the claws in your blog because now I don’t feel as paranoid.

    On the up side I find that losing taste offers a little bit of freedom from the drudgery of food provision and preparation. It is so uninteresting a carrot and an apple often suffice these days. I have found another silver lining – damaged mucous producing glands have resulted fewer sinus infections. I hope this situation doesn’t reverse and I hope you find the same (dried out but) silver lining.

    I am not sure what breed of dog to get after my border collie. Luckily he is getting old so skipped walks are acceptable. A dog is essential but I might need a lazy one next time.

    Doctors generally measure patients by an imaginary lowest common denominator. They are often applying this fabricated norm and it makes them spout ignorant advice. I tend to rely on my own resources as much as possible. It’s the safest option.

    Good luck. Use your eyedrops. They’ll preserve your cornea so you can keep blogging.

    Maree

    I have a border collie

    • Jane Waterman
      | Reply

      Dear Maree,

      Thank you so much for writing. I apologize in being slow to reply. It’s been a bit of a struggly week.

      I agree with you that when you look back you can see so many potential connections between past symptoms and current health issues. When it’s been going on a long time, it’s hard for the foggy brain to remember what was what, but I don’t think it a coincidence that many of the symptoms I had at 13 with glandular fever aka mono are so many of the symptoms that have plagued me as an adult.

      The “claws” I think are associated with the general muscle tension with fibromyalgia. It’s complicated because the joint pain in my last finger joints has always been one of the more painful areas, but I can sometimes wake up in the middle of the night with my body literally arched off the bed, the hands like claws. I know that stress is a bad thing for fibro and autoimmune disease and I’ve been under it so long. I’m working at developing a compassion practice and doing what I can with gentle yoga, but it’s hard when movement can exacerbate the symptoms. We do what we can!

      I think what you say about the sinus infections is true – I have had far fewer of them as I age, because the area is so damaged in many ways. I could do without the sore throat 24/7, but it’s amazing how much you tune it out. I love good food, even if the smells and flavours are subdued. My biggest issue lately is the energy to prepare a good meal. I’ve discovered a really lovely premade kale salad that helps with meal preparation a lot.

      I love going for walks, but some days it has to be a compromise. I know my dogs miss it when we don’t go everyday, and goodness knows we have so many well-meaning people mention how “chubby” they are, but what can you do? On rare times I feel very angry about it, but most of the time I just realize that people just make conversation, and don’t always think about it. I don’t want to ever think about losing our two beagles. They are like my babies now… on days when I can’t go out, just to lie on the bed with them feels comforting. Many people aren’t aware how much they are “therapy” animals as well as families.

      Ah yes, and definitely, I’m a strong advocate of eyedrops. I have gel drops that are thicker than the usual and work well for me. It seems a really personal choice to find what works well.

      Thanks again for writing. Please take care!

      Blessings,
      Jane

  2. Annette
    | Reply

    Sorry there is just no relief for you. I read today about virgin coconut oil being good for the mouth. No, not through Gwyneth Paltrow though she was in the article. It was Leslie Laing Who has been to the Sjogren’s conferences regularly who was quoted with an opinion.

    https://www.thestar.com/life/health_wellness/2014/03/28/is_coconut_oil_the_new_listerine_oil_pulling_has_antibacterial_benefits_u_of_t_prof_says.html

    She plans to try to replicate the study and she has some grants to do Sjogren’s Research so that’s a plus.
    I am heading for a talk tonight on the future of healthcare. That should be fun

    Annette

    • Jane Waterman
      | Reply

      Dear Annette,

      Thank you for writing and bringing the “oil pulling” to my attention. I hadn’t really heard of it! I’m not a huge fan of coconut, but I would certainly be interested in the results of any studies, and I’m ever leaning forward to more natural remedies.

      As for “relief” – like anyone with chronic illness there’s good days and bad days. It’s been tough lately, but I hope this is just a flare after a prolonged period of stress and things will look up. There’s a lot I want to do, but at the moment I am just learning to be patient and doing what I can. :)

      I will be doing my next post for the WAAD Blog Carnival soon, so I’ll need to put my thinking cap on. It’s about issues in life as an Autoimmune Arthritis patient. I am studiously avoiding doctors at the moment, so I feel more like an experiment than a patient. I know I have a lot more advocacy work I want to do, but I’m being easy on myself while there’s so much going on. As always, I’m glad there’s folk like you who are keeping patients front and centre in the discussion.

      Thanks as always for writing. I hope you are taking care!

      Hugs,
      Jane

  3. ChronicCrone
    | Reply

    Hello My Friend
    What an incredibly powerful snapshot into your daily life. I can relate to much of it. It’s such a shame you can’t tolerate some of the meds. Have you tried the prescription strength Voltarin this one you have to get from your Doc. I can’t take any anti inflammatory meds as it does a number on my stomach but the rub in cream is ok.

    Joan

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