More than just feeling tired

Aspects of what follows have been adapted from a number of posts that feature on the Rheumatoid Arthritis site about fatigue.

Along with many other blogs I have viewed over the past few months looking at fatigue being more than just feeling tired.

You see, fatigue is something that of late, I have become quite familiar with, as it has been brought on by a culmination of my autoimmune disorder and long covid, which has been affecting my day to day life in a number of ways (refer to my latest health update).

Fatigue is more than just feeling tired, it is one of the hardest symptoms to cope with when managing an autoimmune disease or any rare disorders or diseases. As it can strike at any moment and often throws a wrench in our daily plans or tasks. It brings about not only severe exhaustion but also decreased mental clarity and whole-body heaviness that doesn’t go away with sleep.

I have come to understand that fatigue is more than just feeling tired, it is a common issue for people living with chronic conditions (refer to my previous posts; When the Burden is Too Much and Fatigue – More than just feeling tired).

According to Andrew Lumpe, PhD

“One important finding in disease-related fatigue research is that it has many complex dimensions including mental, physical, motivation, sensory, mood, social, intensity, duration, quality of life impact, and activity impact.“

You see, getting a restful night’s sleep when you have any chronic illness is, let’s just say, quite elusive and even if you do a good nights sleep and feel energised for the day it can still hit you like a tonne of bricks just when you thought you were ready to get on and do something.

What’s more the guilt of laying in bed or sitting on a chair and supposedly shirking the responsibilities (which you’ve probably assigned to yourself) can be overwhelming.

These two aspects alone can drain you, not only physically, but mentally as well. It is like an anchor that you can’t quite get free off and it feels as if it is dragging you down. It saps your energy and, more importantly, your passion and drive.

And if you try and push yourself to overcome it and end up doing a whole heap of stuff around the house or at work just to get a sense of satisfaction, you can end up paying for it for days, as the fatigue will just linger – Talk about frustrating 😦

The pain, stiffness, and fatigue associated with many autoimmune disorders and diseases, along with a multitude of other symptoms I’m sure, can seem like an unending cycle.

Managing our fatigue may seem like an impossible task. However, there are methods that we can use to try to help manage the fatigue.

One approach to beating fatigue is to learn how to your conserve energy. You can take many different steps to become smarter about how you use your energy and more efficient in carrying out tasks:

Pick and choose what you want to do. You do not have to do everything! Ask for help with some chores or hire someone to take care of certain duties. You can save a lot of time and energy this way.

Your doctor or specialist can help you to figure out what may be causing your fatigue. If you have depression, you may benefit from seeing a therapist. One of the challenges of medications is that fatigue can be a side effect of the many different medicines that we can be prescribed. So always talk to your doctor, or specialist about which medicines might be causing you to have less energy, as they may have other options to better manage the side effects of the drugs and work out what treatment is best for you.

Try to streamline as many household tasks as you can, for example; Setting out all of your ingredients, and your pots and pans before cooking can save time and energy. Plan your activities, do something that requires exerting your energy followed by some rest periods or less taxing activities.

Utilise technological devices, apps and programmes as they may be useful in helping you to manage your energy levels and record those things that you are finding harder to manage, or are becoming increasingly difficult to do. Some of these may include activity monitors, food logs, or various other programmes, tools and resources that are available for your phone or computer.

I have found the RENEW 12-week, peer-led, web-based program beneficial to help people like me with scleroderma learn skills that can be used to manage disease symptoms and improve well-being.

If you work, you may need some accommodations to be made to help keep you productive and happy. In many countries there are laws in place to make sure you can continue to work and find fulfillment in your job.

Some ideas on how you can make some accommodations to help with fatigue may include things like getting a parking space closer to your workplace, or shifting to a more flexible time schedule so that you can work during your peak energy level times. Explore what disability services you may be able to access to make your life easier.

Set routines, as much as you are able to, around your sleep patterns and try to determine the cause of any sleep problems as there are a variety of solutions for getting much needed sleep and rest.

Some ways to improve your sleep may include: 

1. 1. Avoid alcohol, nicotine, and caffeine because they can disrupt sleep
   2. Go to bed and get up at about the same time every day
   3. Get some exercise during the day, when possible
   4. Make your bedroom cool, dark, and comfortable
   5. Turn off your computer, cell phone, and television
   6. Follow a bedtime ritual to signal your body that it is time to sleep

Get and stay active when you can. Deconditioning or loss of muscle and stamina from lack of exercise can be at the root of fatigue. Exercise also increases endorphins, your brain chemicals, that produce a sense of well-being. Ask your doctor for advice. He or she may be able to suggest a physical therapist, occupational therapist, or personal trainer who can help you get active and rebuild muscle and strength.

Dehydration can lead to low energy levels and staying properly hydrated helps keep your body running at its most effective. Therefore drink plenty of water and focusing on a diet that works for you is extremely important.

You may need to talk this through with your doctor, specialist or a dietician about what will work best for you as there are a myriad of different diets that can supposedly help in a multitude of different ways.

But most importantly it is working out what your body needs to run at its optimal level, ensuring you’re getting the right nutrients etc. that may be lacking due to the medications that you are on.

Fatigue is not something that you will get over quickly and the truth of the matter is, that it may even linger for an awfully long time, well after you start to feel better, and it may even rear its ugly head when you least expect it. Unfortunately, some of us may never be able to fully break free from the effects of fatigue 😦

But hopefully some of the above information may help you learn how to your conserve energy and be beneficial to you as you endeavour to work through whatever it is that you are going through.

I know for me I still have a long ways to go and I’ve already experienced the occasional set back on my journey – but go on one must 🙂

Blessings ’til next time.

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Joy in the Hard Times

Can you relate to the quote from Wynonna Judd? I can, as I reckon I’ve been in a bit of a funk.

So much so that I haven’t really posted anything on any social media platform for a while.

Therefore, right up front for all those doubters out there, I’d like to honestly say that due to my faith, I can find joy in the hard times!

You see, my faith has helped me, more than I’d care to imagine, get through some trials and tribulations that I’ve had to face and continue to do so.

And if that doesn’t interest you, all well and good – move on to the next article or item on your newsfeed because what I’m about to share may upset you – But for those of you that I’ve managed to spark an interest, carry on reading 🙂

For the past few years now I have been using the Bible App YouVersion for my daily devotions and aspects of what follows have come from one that I’ve read recently. I’ve taken the liberty to incorporate aspects of my life and health journey as I continue to come to terms with an incurable progressive autoimmune disease called Scleroderma that I’ve been saddled with, for more on this check out my health updates.

You see, nobody enjoys suffering right.
It’s hard to find joy in the midst of trials or difficult seasons – it’s much easier to feel sadness or misery, and that’s why the Apostle Paul’s encouragement in Romans 5 may sound just a tad contradictory.

Paul was writing this letter in approximately 57 AD to people in the church of Rome who were experiencing suffering from ungodly rulers, and yet he encourages them to rejoice in their suffering. But it wasn’t enough to just endure suffering – he tells them to have joy.

Now over my lifetime I’ve had plenty of joyous occasions; I’ve travelled around the world and been involved in ministry, one way or another for over 25 years, 15 years of which have been as an Officer of The Salvation Army – I’ve been promoted to Major, which in some regards is not a minor thing 🙂 I’ve been involved in literally saving some people’s lives, both physically and spiritually. I’ve been privileged to journey life with a variety of people from all over New Zealand.

I’ve seen my own children grow up to be awesome young adults in their own right, two out of the three are now embarking on married lives of their own. I’ve celebrated just over half a century on this earth and become a biological grandfather. I’ve had some sporting successes (albeit from a global standpoint these have been very minor) and I’d like to think that I have grown as a person.

Along with these I’ve had some down times, when things haven’t quite gone the way that I would have wanted and I’ve lost people dear to me. And in those not so pleasant times I have retreated to my cave every now and again to take stock of life and mull over the unfairness of how things have transpired.

Some may say that over the past couple of months of isolation, due to my condition, I’ve been doing just that. I’ve been quietly suffering more than I’ve been letting on. These periods can be extremely hard and lonely, and finding joy can sometimes be near on impossible.

But I was recently reminded to “pour out all my worries and stress upon Him and leave them there, for He always tenderly cares for me.” 1 Peter 5:7 (The Passion Translation)

The thing is, Paul knew that it wasn’t natural to be joyful in hard times, but through the work of Jesus, we as Christians can have peace with God and access to faith, he writes;

“Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God.” Romans 5:1-2 (New International Version).

Faith allows us to hold onto the hope that suffering isn’t the end of our story.

Over the past week I have experienced Covid for the third time and each time I’ve had it it has presented slightly differently, the effects on my body have been progressively worse.

The first time thankfully was a mild hit, and the second knocked me on my backside for a few days before the antivirals kicked in and helped stabilise what was going on internally.

This third time however has been a bit more of a bumpy ride, not that I’ve needed hospitalisation or anything – but I know that even with the antivirals kicking in it is taking longer for my internal system to settle down, and the strain on my body I’ve felt a bit more profoundly.

Unfortunately, this could be accentuated because I may have been experiencing complications due to long Covid since the 2nd time, or maybe its a progression (flare) of my autoimmune disease. But finding joy in this time – yeah right!

Or maybe, just maybe I have – You see as a Christian I’ve ironically become even more comfortable with some of the challenging decisions that Annette & I have been making of late in regards to our future and what it is that I want to do in life and ministry going forward.

Now I know that this maybe something that Annette is still working through – But we both know that God works within our difficult situations, and in these often frustrating and challenging times we can have patience and perseverance, trusting for God to complete His work in and through us.

Paul goes on to write that “even in times of trouble we have a joyful confidence, knowing that our pressures will develop in us patient endurance. And patient endurance will refine our character, and proven character leads us back to hope. And this hope is not a disappointing fantasy, because we can now experience the endless love of God cascading into our hearts through the Holy Spirit who lives in us!” Romans 5:3-5 (The Passion Translation)

You see, perseverance refines our character. As we wait on God, we become people who look more like Jesus, and our trust in God grows stronger. This increases hope within us.

Now it’s not easy when you see suffering to have hope – Believe me I know! But as we trust in God, we are strengthened to continue to endure.

For when we look at suffering from God’s perspective, we begin to realize that He is working to bring glory in every situation.

For God has shown us through the Holy Spirit that He loves us. He suffered and gave Himself for us so that we could have a relationship with Him, and He will continue to give us everything we need to live a life that honours Him.

So regardless of what you’re going through today, why not consider how God is working in your life, even through those difficult seasons that you face. Think about the ways that God has poured out His love into you through the Holy Spirit.

Ask Him for strength to persevere, and let that perseverance develop into a strong character that hopes and trusts in God even in the hard times. And when persevering gets difficult, hold onto this truth: God has given everything for you, and He will never leave your side.

Maybe you’d like to pray the following prayer written by Debbie Kay, Hope for the Broken Hearted.

Dear Lord, You know all I am dealing with. You know things are happening that are beyond my control.

(Maybe you’d like to list them in a notebook or a journal so that you can refer back to them later and see how God has answered your prayer.)

Please help me accept what I can’t change. Help me turn my worry time into prayer time. Please help me keep my eyes fixed on you and not these things that weigh so heavily on me.

I give you my stress. I give you my disappointments. I give you my frustrations and [the] sadness [that I feel] and ask for your peace to fill my heart and flood my mind.

May your will be done. I thank you in advance for all you will do. 

In Jesus’ name, I ask these things. Amen

Geraldine Solon writes that “a lesson for all of us is that for every loss, there is victory, for every sadness, there is joy, and when you think you’ve lost everything, there is hope.”

So maybe you too can start finding joy in the hard times!

Blessings ’til next time 🙂

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Health Update #13: Dang it Covid

As I alluded to in the World Scleroderma Day post the other day it has been a while since I have been online posting. 

This is mainly due to the fact that the past few months or so have been considerably harder than what I’ve been trying to lead myself to believe.   

Initially, I put it down to being exposed to Covid for the 2nd time just prior to Easter, followed by the latest course of Rituximab that concluded at the beginning of May.

This has culminated in me feeling a tad under the weather for quite a while and suffering a bit of anxiety, (which I haven’t really experienced before) around if when and how Covid could affect my infusions, the side-effects going forward and the efficacy (don’t worry I had to look that one up – it essentially means “the ability to perform a task to a satisfactory or expected degree“) 🙂

Needless to say that the past two months of pseudo isolation have been harder than normal as firstly, the levels of fatigue that I have been going through have seen me barely able to get out of bed before 10am most mornings, and this is irrespective of me having a good night’s sleep or not.

Along with the following symptoms;

The amount of aches and pains throughout my body have increased (but one can never put a finger on where it actually hurts).

A dry mouth (irrespective of how much water one drinks) and persistent cough, an increase in the amount of ulcers in the mouth that make swallowing uncomfortable.

The dull headache that seems to be a constant companion, and what I amount to a cotton wooly heady feeling that never seems to leave me, even when I up the level of panadol, antihistamine medications and throat lozenges (all remaining within recommended dosages).     

As well as a sense that my motivation, passion and drive to get stuff done, both around the house and also at work have simply got up and gone, has culminated in me feeling a tad under the weather and I reckon that it has been having a flow on affect on my mental health  😦 

These symptoms can be synonymous with long Covid (which is not out of the question seeing as I have had it twice within 6 months), or it can simply be a flare, or a progression of my Scleroderma.

On top of all of this I’ve had a CT Scan and lung function test. The later appears to show that the DLCO has improved slightly over the past 12 months. (DLCO is a measurement to assess the lungs’ ability to transfer gas from inspired air to the bloodstream). 

However, the CT Scan threw up some interesting aspects on the commentary and although it was nothing out of the ordinary from the specialists point of view, it did have Annette & I wondering what the heck, and now what!

With all of this going on for me at the moment the specialist, GP and Health social worker have recommended that I need to reduce the amount of hours that I’m doing each week. As currently I’d be getting about 2-3 hours per day “proper” focussed / productive time a day, if I’m lucky, and that’s even with the flexibility I have with working from home.

This for me is a huge frustration as only a few short months ago I was writing to head office to explain that my ‘capacity’ has not been affected by my condition and that I can continue doing all I can to help others in ministry to the best of my ability. 

Then low and behold to top things off Covid has once again visited my compromised system for the 3rd time 🤧 Dang it Covid!

I thought that I was being reasonably safe.

As someone with an invisible disability I’d been carefully avoiding crowded situations and when out and about I’d maintain social distancing as best as one can. When I’m visiting people I’d tend to do it outside of the normal busy periods, and I would position myself reasonably close to doorways for the airflow and/or be outside to ensure adequate ventilation. 

The thing is, those of us that are immunocompromised or elderly need to be particularly on our guard, as the risk of infection from respiratory illnesses (including Covid) is still very much out there (irrespective of the narrative we are being told these days within the media) and it is potentially getting worse!

As people no longer mask up in public places, don’t necessarily report their RAT results, carry on working when feeling under the weather (it’s only a cold right!), and become blasé about what they can do to protect their fellow citizens – the amount of people that I’ve seen not coughing and sneezing into their arm/hankie when out and about is a little disconcerting.

Thankfully, yet another course of Paxlovid antivirals seems to be doing the trick for me as I isolate at home couped up in my room recovering, albeit a bit more slowly this time. I guess time will tell how long it will take for me to recover from this bout, if long covid is affecting me after all, or if it is the scleroderma playing havoc with my immune system.

Maybe I’ll need to extend the period of isolation that I’ve been having after my infusions, which is something that I guess I’ll need to discuss with my doctor on my next visit, and start being even more vigilant when out and about. 

Hopefully, I’ll be able to spend some quality time next week being Popa P with my eldest daughter and her husband bringing my grandson Jack up to Wellywood for a visit.

He is growing up so quickly, before we all know it he’ll be wanting the keys to the car to go and get some snacks. 

In the interim stay safe out there people; wash your hands regularly, wear a face covering at all times if you can, ensure that you’re in well ventilated rooms, get your shots and if you are visiting other people who are at risk take a test to help protect them. If you are immunocompromised and/or elderly you may need to look at reducing the amount of visitation that you are doing, or be more particular around who it is you visit and where, which I know can be extremely challenging, especially for those extroverts out there. 

Blessings ’til next time 🙂

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