When the Burden is Too Much

One of the biggest challenges with the rare disease Scleroderma is a lack of energy, also called, fatigue.

It can be likened to dragging a ball and chain around with you night and day that you simply can’t break free from.

When the burden is too much – what gives?

Fatigue is something that I’m becoming more and more familiar with especially over the past few months or so. Initially I had put it down to my body getting used to medications that I’ve been on, as previously I’d get a bout of fatigue every now and again. Then in recent months I’d put it down to the new course of treatment that I’ve been having.

However, I’m learning through reading about and listening to others that suffer from this rare disease through the variety of support groups, that often whatever energy people can have in their body at the beginning of any given day could be gone in a moment. And the ultimate challenge with fatigue is that you simply don’t expect it!

One day you can be fine and do a myriad of tasks, the next day it takes everything that you have just to get out of bed.

Scleroderma patients that experience fatigue often find this symptom extremely frustrating because they were used to living an active life and now need to adjust to a new level of activity, which can come and go.

Sharon Esposito described it like this;

“FATIGUE…..those who don’t suffer from a chronic illness may not understand exactly what it means.

It’s not just feeling tired, it can’t be alleviated by a nap. It’s much deeper than that.

Fatigue from Scleroderma is a total body shut down. It’s as if a vacuum has sucked out any energy or strength your body has and you are left with nothing.

Even simple tasks such as showering, getting dressed, or sometimes even getting out of bed can feel like climbing Mt Everest. It’s just one of the MANY symptoms that I and others with Scleroderma deal with everyday.“

The thing is, fatigue is a complex problem often experienced by people with chronic illnesses such as Scleroderma and can contribute towards brain fog.

Which is something that I wrote about here.

Some people have medical reasons why they have fatigue, like thyroid imbalances or anemia. It is usually caused by an interaction between physical and emotional causes. 

Unfortunately though, there are no medicines to improve general fatigue in scleroderma and the medical community does not entirely understand it. Still, there are lots of things that can contribute to fatigue, such as:

• Pain – Chronic pain, acute pain, and worry about pain can all contribute to the experience of fatigue. Here, fatigue can be caused both by chemical changes in the body and by the stress and anxiety that often accompanies pain.
• Sleep problems – Not enough sleep, disrupted sleep, or sleep that is not of high quality all contribute directly to daytime fatigue.
• Doing too much – Adjustment to a new illness often means having to adjust what your ideas are about a reasonable amount of activity. Overdoing things leads to increased fatigue.
• Limited capacity to process oxygen – Scleroderma can affect the lungs in several ways, which can result in shortness of breath and difficulty breathing.
• Depression – Mild situational depression is a normal response to the limitations of chronic illness. Often, people experiencing depression have a loss of energy and enthusiasm. If you believe you are depressed, you should tell your doctor or other health professional.

Recently I have been accepted as one of only a few international participants into the University of Michigan RENEW Scleroderma Fatigue Study.

The focus of this 12-week RENEW program is to provide people with scleroderma the resources, tools, and knowledge to self-manage fatigue.

It can also help address pain, physical changes, and emotional challenges, all of which may contribute to fatigue.

The RENEW Program involves health coaching from trained peer mentors and allows users of the Web and App based platforms to read information about scleroderma and to set and track weekly goals and complete activities relevant to these goals.

In due course I will be sharing some of my experiences with the programme 🙂

Over the past few weeks or so I’ve been listening on YouTube and Spotify to a lot of progressive rock bands; Yes, Jethro Tull, Rush, Genesis, Uriah Heep, Marillion, Hawkwind, Supertramp, among others.

A song that has resonated with me of late is one that features on the Japanese version of Asia’s Omega album, Drop A Stone (video below).

The lyrics of the chorus are as follows;

When the burden is too much to take
When you feel that your back is to break
When it all gets too much, and your feelings are such that you ache
Let it go

Although, sometimes with fatigue it is hard to let it go per say, and those affected by it can probably relate to the quote from the picture above; 

“Just because you aren’t making progress as fast as you think you should does not mean that you aren’t making progress. Keep going.“

We do need to do what we can, as small as that may be, to combat the effects of fatigue and let go of the psychological tension that could cause us to start sinking into a deeper and darker level of depression.

We need to try to remain as upbeat and positive as we can and accept that even if we can only manage to clean a corner of the room, or vacuum one room of the house that is better than nothing at all 🙂

 

 

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