“Do I Get Fries With That”? – Dealing With Chronic Illness Side Dishes

I thought my body couldn’t possibly surprise me anymore. I thought I had a good handle on the reality of my diseases and on so many levels I do!

I recently wrote a blog post called “Sending The ‘What If’s’ of Life Packing”  It’s all about focusing on “What Is” rather than “What If”.

So how did this next “health” chapter sneak up on me when I’m so aware of “What is” in my life?

A False Sense of Security

When you’ve been living with chronic illness for a while, I’ve realised it’s easy to be lulled into a false sense of security and familiarity with symptoms and diagnoses.

I’ve made so many huge changes to my life including medically retiring, installing a stair lift in our home, utilising all kinds of mobility aids, being approved for a top level Home Care Package (inclusive of permanent residential care if/when I get to that stage). My list could go on and on but you get the picture.

These are all things that are indicative of the fact I have serious, debilitating, progressive health issues. I know that. I accept that.

So why has my recent “What Is” hit me so hard?

Just Because You Understand, Doesn’t Mean It’s Always Easy

The simple answer is, I wasn’t looking for it.

I have always been aware my bone disease was progressive and I’ve been aware it’s been progressing but there were factors of it I had forgotten.

I forgot I had a condition called Myositis Ossificans. In layman’s terms I have bone growing in my muscles, particularly my thigh muscles. It is excruciatingly painful and debilitating.

I forgot that I have Avascular Necrosis in my hips. Basically my hip bones are breaking down. I can’t have anymore surgery due to being high risk of life threatening complications, so hip replacements are not an option for me.

I knew I had Gastritis and it was getting worse but I received a surprise diagnosis of Gastroparesis when I recently visited my Gastroenterologist. Very basically it’s a condition that affects the stomach muscles and nerves and prevents proper stomach emptying.

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I’ll Have Fries With That!

With Gastritis and Gastroparesis, fries are the last thing I’ll be having but that catch-phrase sums up perfectly what life is like when dealing with Chronic Illness.

Our primary diseases rarely come on their own. There are usually a selection of side dishes including syndromes, conditions, side effects and related diseases that cause complications and often confusion.

Most of these have a habit of sneaking up on you when you least expect it and before you know it you are wondering what happened. Why are you suddenly so much worse than you were? Why has this happened so quickly?

Keep Reviewing The “What Is”

We can’t afford to become complacent. We can’t afford to think that we won’t take a turn for the worse or we won’t progress.

That’s not being pessimistic, it’s being realistic. It’s so important to not stick our heads in the sand when it comes to progressive or relapsing/remitting chronic illness.

So what can we do to keep one step ahead of our diseased bodies?

Surprise, surprise, I do have a few tips.

  1. Keep a symptom diary. If a new symptom occurs or an existing one worsens, I have a 4 day rule (unless it’s clearly an emergency and I need to go to ER). If my symptoms are worrying or still severe after 4 days, I call the appropriate Specialist or see my GP.
  2. Know Your Primary Disease Prognosis.  It can be very easy to be given a diagnosis and be so pleased to know that you are dealing with something with a name, you actually forget to fully research what the disease means in terms of practical living. What changes to your life do you need to make? Is it a progressive disease? What symptoms should you be concerned about? What symptoms are to be expected?
  3. Know Your Disease Side Dishes? What can you expect in terms of related syndromes, conditions and medication side effects. These can be as debilitating, if not more so, than your primary disease.
  4. Don’t Delay Making Adjustments.  What changes can you be ready to make if your disease progresses or relapsesOnce it’s clear your disease is progressing or relapsing, don’t hesitate to make these pre-planned changes. To put these in place as soon as possible, to accommodate new or worsening symptoms, is so important.

Denial Is Disabling

The longer we stay in denial of our changed circumstances, the harder it is to accept that further changes to the way we live may be required.

Denial robs us of the opportunity to forge a better quality of life. Denial exasperates our disability. Acceptance allows us to embrace change with a sense of peace.

If we’ve done our homework on what to expect with our disease progression, the grief process that accompanies change, can be slightly reduced each time we experience the next stage of disability.

None of us want side dishes with our Chronic diseases but unfortunately they are inevitable at some point.

It’s not easy to face the fact that our disease might be a progressive one.  If it is and we remain in denial about that, we reduce our opportunity to have a life that can still have a sense of well-being, despite our physical restrictions.

Let’s Be Prepared

Be pro-active wherever and whenever you can in your health journey. Don’t let a new “what is” circumstance sneak up on you. Keep vigilant and keep reviewing what’s happening with your disease. Keep checking what is your new reality.

Life will be difficult and hard at times,  especially when further adjustments are required to accommodate disease impacts.

Let’s choose not to make it harder than it needs to be. Let’s be prepared and be one step ahead where we can.

Take care

Sam 💞

 

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

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13 thoughts on ““Do I Get Fries With That”? – Dealing With Chronic Illness Side Dishes

  1. I like your 4 day rule! I keep a diary of symptoms as well, and today happened to be day 4 of a problem that flared up again, so I printed my list of symptoms and was able to get in to the doc today to have some tests ordered. With chronic conditions, we owe it to ourselves to do a little bit of the legwork ourselves!

    Liked by 1 person

    1. I’m so sorry you’re flaring but I’m very glad my 4 day rule prompted you to get checked out. That’s fantastic that you’ve got in to see your Dr today. I really hope you will be ok and a solid plan can be put in place to deal with your new “what is”. Thinking of you xx

      Liked by 1 person

    1. Thanks Esther. Yes the 4 day rule has saved me so many unnecessary trips to Drs, hospital etc. It can be a little hard sometimes to work out if it’s an emergency or not but I think I’ve got a reasonable handle on it. ❤

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  2. Sam, the journal is such a must. I do the same. I also have recently found I have slow emptying and SIBO-C (small intestine bacterial overgrowth with constipation). I’ve had 2 take 2 rounds of antibiotics, eat smaller meals and follow a special diet. For 2 years I had severe nausea and felt toxic. I never had heard of this problem. Just another side of fries, lol. I found smaller meals more often to be the best answer for the slow emptying. It’s a lot of work however. Hope it doesn’t give you too many issues. No more side dishes for you! Keeping you in my thoughts and prayers! Sincerely, Marla

    Liked by 1 person

    1. Oh Marla, I’m so sorry to hear you have SIBO. Yes small meals are all I can tolerate and at the moment I am very limited in what I can eat. I’ll be starting meds once I have an Endocscopy in a few weeks. My Gastroenterologist just wants to make sure something else isn’t going on before starting me on Gastroparesis meds. Fun and games! Lots of love xx

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      1. Hi. I’m sorry to hear you’ve added another dx to monitor but in ways it can be validating. I too added gastroparesis to my “portfolio”. After almost a year of nausea til noon and living on graham crackers. The good news is I now know whats happening. Mine has not progressed in ten years. I drink coffee w cream in the AM w a banana or handful of nuts or Maybe toast (rarely). Then i do not eat til i feel hunger usually 3 pm. If i eat then it carries me to a lt snack. Just wait til your body says feed me and eat small amounts. No protein before 3pm keeps me free of nausea. I have reflex sympathetic dystrophy. Irregular ht rhythms, gastropsresis, hx of benign brain tumor/craniotomy 9/29 dilated cardiomyopathy 1988-1992. No t shirt big enough for it all. And there is much more. But I am living. Loving snd finding Joy. Many ill w no home or insurance. People starving. Im not personalizing my dna—im just in it! Here if you need ideas or an ear!!

        Liked by 1 person

      2. Thanks so much for commenting Jackie. Yes I am definitely listening to my stomach and letting it take the lead. I will be given medication in a few weeks to help so that will be good. I might be able to eat a little more normally. Interestingly I don’t get a lot of nausea, just intense pain and regurgitation. Maybe my upcoming Endoscopy will shed some more light on that.
        I’m sorry you also have a “portfolio” of diseases. You sound like you are coping well which is wonderful. A positive attitude really does help so much doesn’t it. Take care 💞

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  3. Great post. I have been so focused on treating migraines that often my regular maintence routine for Fibromyalgia falls by the wayside. I have to take care if my whole body and not just the part that yells the loudest.

    Liked by 1 person

    1. That’s exactly my issue Chrissy. My rare bone disease screams so loudly at me that I forget too easily I have Rheumatoid Arthritis and other issues that are impacting me overall. Thanks for commenting xx

      Like

  4. I absolutely loved this post! I recently started a bullet journal and in it I am keeping track of foods I ate in the day, symptoms I was having and feelings of the day. I am hoping that by keeping track of what I ate I will see if those foods are causing my symptoms to flare up.

    Liked by 1 person

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