talking about life with autoimmune disease

life with autoimmune disease

Kimba Likes | talking about life with autoimmune disease

I’ve talked here before about my chronic illness and autoimmune disease.  Life with an invisible illness is difficult, so I’m going to take you behind the scenes and share my life with autoimmune disease; and my daily routine.

You can read more about my health history here.

This October marked a year since my hysterectomy, solving my Stage 4 deep infiltrating endometriosis and adenomyosis in one fell swoop.  In August, I turned 43 and had precancerous bowel polyps removed.  I also discovered I had a hiatal hernia, most likely caused by the whooping cough that plagued Boyo and I last year.  Honestly, if I was a horse I’d be a Pritt stick by now.

A few months ago, I discovered that my autoimmune disease had come out of remission … and it had brought some new symptoms with it.  I have Undifferentiated Connective Tissue Disease and Sjogren’s Syndrome.  I’m technically in remission for UCTD but the symptoms have not yet got the message and buggered off!

Life with Autoimmune Disease

My main day to day issues of life with autoimmune disease involve:

  • Joint pain and inflammation, particularly in my hip flexors, shoulders, feet, hands and wrists.
  • My hands are permanently swollen, with a loss of sensation which has seen me banned from washing the Riedel wine glasses.
  • I suffer from extreme dry eyes and mouth (plus it affects my skin, hair, nails and also my ladygarden – I know right, the glamour).
  • My hiatal hernia gives me reflux, so it affects how I sit and lie and exercise and what I can eat and drink.
  • I am in permanent brain fog exhaustion, whether or not I’ve had a good night’s sleep.  I tend to read myself to sleep, and then have a slow start to the day whilst the Blokefolk get ready for school and work.
  • Stress and anxiety caused by the loss of control over my own body and guilt.  So much guilt.

My treatment routine:

  • I take Panadol three times a day.  People thinks it doesn’t do anything, but I’m here to tell you it is an essential part of pain management.  It works to dull the pain receptors and has a cumulative effect.
  • I’m allergic to Voltaren and morphine, so many pain killers and anti-inflammatories are off the menu for me.
  • I am trialling a gout medication twice a day to help with the inflammation.  It makes me a bit dizzy so I have to time it around any driving I may have to do.  I also can’t drink when I’m on this medication.  I know right. Luckily I’m fun with or without booze!
  • In the mornings, I take a combo Vitamin D and calcium tablet, and in the evening I take probiotics.
  • For my reflux, I take another tablet once a day.
  • I take diuretics when my inflammation oedema is really bad.
  • For my autoimmune disease treatment, I take an anti-malaria drug.  I know, weird huh?
  • Gentle exercises set by my women’s health specialist physio
  • Lots of rest, being kind to myself, and using the Spoon Theory
  • Watching what I eat – following an anti-inflammation diet (no gluten, dairy, caffeine, alcohol, etc)
  • Using ice and heat treatment, as well as massage and compression
  • Being aware of my cycle so I can look out for PMS symptoms – it affects my moods, anxiety and inflammation pain
  • To treat the dry skin issues:
    • I use gel eye drops at night and another form of eye drops during the day.
    • I go through tubes and tubes and pots and pots of hand creme and lip balm.
    • I’ve switched from a conditioner to a leave in masque for my uber dry hair; and I use a cleansing oil head to toe.
    • I also use special products for my ladygarden.

Kimba Likes | life with autoimmune disease

Vagisil ProHydrate Plus

Let’s talk more about the ladygarden issue.

Earlier this year, I attended a fancypants exclusive intimate ladies lunch at one of my favourite destinations, the Grounds of Alexandria, put on by Vagisil.

I have to admit I was a little bit sceptical.  What I knew about Vagisil was that they sold scented products to cleanse and perfume your vagina.  I mean, we all know the vagina is self cleansing.  Plus if your vagina has an odd smell, have a shower and if it doesn’t go away, go and see your doctor; don’t just apply a vagina perfume.

But I learnt Vagisil is about so much more – and as my symptoms evolved, I was so grateful to have learned about the Vagisil ProHydrate Plus range for treating dry vaginas.

The intimate ladies lunch was to open the conversation about a taboo topic.  If you think talking about vaginas is taboo, the topic of dry vaginas is completely off limits. *shocked face emoji*

Kimba Likes | life with autoimmune disease

Kimba Likes | life with autoimmune disease

meeting the charming and very funny Dr Ginni

When we think about dry vaginas, the first thought is old ladies and menopause.  This is caused by a drop in oestrogen but it’s not a sign to give up sex, or live a life of discomfort.

Dry vaginas cause discomfort, pain and can lead to infections.  It’s not limited to perimenopausal and menopausal women.  Anyone who experiences stress and life experiences like pregnancy, birth, breastfeeding and the like can experience it.  Keen exercisers can also experience it, due to having several showers per day.  Certain medications can cause the vagina to become dry, as can ph imbalances in the vaginal area.

We don’t hesitate to slather on extra moisturisers when our skin is dry, so it makes sense that Vagisil have produced a range of products not just to lubricate the area but to moisturise and hydrate the vagina, inside and out, for long lasting comfort.

Kimba Likes | life with autoimmune disease

Vagisil ProHydrate Plus is more than a lubricant.  It provides long lasting moisture to the external and internal areas, because vaginal comfort is more than just sex.  I mean, don’t get me wrong, that’s a priority but it’s only an hour or so out of the day – if we’re lucky!  Where so many of us go wrong when we hit menopause, or experience vaginal dryness for other life reasons, is to use a lubricant when what we need is a moisturiser.

I use the External Hydrating Gel as part of my autoimmune disease treatment routine.

Read more about Vagisil ProHydrate Plus here

So, life with autoimmune disease.  It’s not fun, but it is manageable.  I’m super lucky that I’m able to work from my sofa, and take time off when I need to, and access health specialists across the spectrum.

Life with autoimmune disease is more about management than recovery.  If the planets align, I may go back into full remission.  To be honest, just to remain at my current level and not get worse would be pretty good too.  I’ve experienced both sides of this coin.

One of the hardest things I have to deal with is the guilt.  The guilt that I can’t do what I want to because my body won’t let me.  The guilt of my husband having to pick up the slack.  The guilt of being sick for most of my child’s life.  The guilt of not being able to work and bring in a full time income.  The guilt of say no and putting myself first.

But I’m putting myself first and doing something about that too.  My life is controlled enough by a body that is attacking me; I won’t let it take my emotional health too.

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I attended a Vagisil PR event and received complimentary products

Like this post? I’d love you to share it!

  • - 18 December 2016 - 8.38 am

    My mum has lupus, also an auto immune disease and she too has been taking anti-malarial drugs with good results. Hope they work wonders for you too. I love that you can self care like a boss, and that even if you’re auto immune disease is making you feel physically under par, your emotional wellbeing is on point. As for the dry lady gardens, thanks for starting the conversation. It’s such an important topic and one we need to talk about more. Side note: how awesome is The Grounds?!ReplyCancel

  • Mystery Case - 17 December 2016 - 6.26 pm

    Can relate to most of your issues. Six months of extreme treatment has actually made things worse and I’m running out of treatment options. Just really hoping that I can get back to managing with the basics and pull off all of my goals for 2017.ReplyCancel

  • Lisa Mckenzie - 15 December 2016 - 6.56 am

    Thank you Kimba for talking about this I also have an invisible illness and chronic pain and use the spoon theory and have a very dry vagina! I have tried every product on the market for it so I’m going to give this a go,more women need to talk about it because I thought it was normal… so not thankyou from the bottom of my heart and probably my husbands XxReplyCancel

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