How to handle the guilt of Chronic Fatigue in MS

How to handle the guilt of Chronic Fatigue in MS

I work every morning, glad that I can. Then feel guilty every afternoon because I can’t. How many of you are feeling exactly the same way about our perpetual chronic fatigue or interminable tiredness? This is the Chronic Fatigue in MS.

Chronic Fatigue Multiple Sclerosis Diet Laziness Tiredness

It is frustrating not to be able to do all of the things you think you ought to be doing. It is extremely exasperating not to be able to do any of the things you want to do. I have discussed this overwhelming tiredness in an earlier post.

This is the world of chronic fatigue. You are not being lazy. The overwhelming tiredness you feel is an illness.

If you have an autoimmune disease like multiple sclerosis, fibromyalgia or chronic fatigue syndrome you will know this feeling only too well.

What is chronic fatigue in MS?

This chronic fatigue is not just being physically tired, it is also being emotionally tired and cognitively tired.

  • Physically tired where your limbs don?t want to move, where putting the kettle on is an extreme effort.
  • Emotionally tired where you are selfish about everything and you do not want to hear about other people?s problems
  • Cognitively tired where you brain is out of gear and you cannot even think about your to-do list. What to-do list?

Time management on a microscopic scale. You have limited energy, perhaps no energy at all. But, you still have a life, you still have a job; these things are all incompatible.

But, after my fourth filtered black coffee of the morning, I am slowly coming to life. I had a poor night’s sleep. I awoke with what felt like a thumping hangover despite not having had anything to drink. Albeit I did dream that I had been out partying.

MS Sucks, in more ways than one. If I do have a drink, I get drunk very quickly and then feel hungover for days and now I find that all I have to do is dream about alcohol and end up the same way.

Time Management

The spoon theory was, allegedly, coined by Christine Miserandino to explain her perpetual lack of energy. This is a good analogy for our time management problem.

But if you have chronic fatigue then the only way you will accomplish anything will be by dividing all of the tasks into bite-sized portions and taking generous rest breaks in-between.

Sounds simple, right! Well, the theory is, the practice is often less clear-cut.

In practice, or at least, in my experience, the idea of dividing work into manageable “bite-sized” quantities is great just as long as you remember where the portions are, where you left off and at what point in your managed journey you have reached.

“What’s difficult about that” I hear you cry. Nothing at all, until you need to contend with brain fog and you count it as a successful day if you even remember what day it actually is.

Spreadsheets and to-do lists are imperative. It all sounds very tedious but, they are essential if you have any hope, of not only keeping track of the work but, avoiding unnecessary duplication of effort where you redo a task because you’d forgotten you did that one yesterday. Really! I have done it and felt such a fool when I realised it.

A solution to Chronic Fatigue in MS

I have been expounding, at great length, about what chronic fatigue is, without explicitly offering a solution to this overwhelming tiredness. The truth is, I don’t really have a solution; not a real solution. I wish I did.

But, there are ways of coping with chronic fatigue, just as there are ways of coping with all of life’s problems.

Only yesterday, I was in the kitchen preparing the vegetables for the evening meal. It’s not something I volunteer for very often but, I was feeling guilty, my wife had been tidying the garden all day and she was exhausted. I had a little energy, so I felt obliged to do what little I could.

I cannot stand for any length of time, I know that and often I will sit at the kitchen table to peel the potatoes and chop the carrots and the cabbage. On this occasion, I chose to stand at the kitchen sink to do the preparations. I could feel my legs start to wobble, tingle and throb. This was not muscular fatigue, this was nerve fatigue.

Memory Blip

I had intended to continue this discussion, by comparing overworked nerves to overheating wires in an electronic circuit, but I couldn’t remember the word I wanted to use.

So, Google to the rescue, or so I expected. Many of us rely on this ubiquitous search engine for all of our answers; it is lazy and it does nothing to improve our memories. But, I drew a blank; obviously, I was using the wrong search terms.

Then, out of the blue, it came to me; analogy was the word I had been trying to remember. It was an analogy.

I like to think of myself as well-educated with an extensive vocabulary but, that’s no good if you’ve lost the key to the library.

Nerve Wiring Analogy

Now that I have managed to extricate the word, from the dusty recesses of my brain that is laughingly called my memory, I can continue with my neurological comparison.

Yes, I was standing at the kitchen sink peeling the potatoes and my legs had begun to tingle. Why? Because I was using the nerves and they were rebelling. Standing requires muscle control, sitting requires muscle control and all of this muscle control requires your brain to send signals via your nerves to your muscles.

Everything you do is controlled by your brain and the nerves that connect it. The more you do, the more your nerves are used to send the signals and those nerves become fatigued. This, ironically, is what makes it difficult if not impossible for someone with an autoimmune disease to exercise.

Back to the wiring analogy, wires carry current and this current generates heat. In time this heat degrades the wire and if the heat becomes excessive, the insulation melts.

The insulation for your nerves is myelin, and no the myelin is not melting but multiple sclerosis is destroying the myelin which blocks or reroutes the nerve signals.

So rest, let the nerves recover.

Nerves tire, they become fatigued, so frequent rests are essential. You are NOT being lazy when you take time out for a rest, you are recovering. Never forget that.

Setting a manageable workload, pacing yourself

This takes us back to counting spoons. You know you have only a limited supply of energy. And you also know that despite taking all precautions and with the most careful planning, things will do awry.

Only this morning, I had an appointment with the opticians to collect my new glasses. But, in order to save a little time, we went via the scenic route to avoid traffic and any potential delays. This was a bad move; roadworks had closed the road just short of our destination. We could have turned around but that meant a 3 or 4-mile detour and a considerable delay.

Being brave, or foolhardy more likely, I said to my wife “We’ll walk, it is only round the corner.” It was only around the corner, but only round the corner was about a quarter of a mile. Given that at times I struggle to walk across the room, this was a huge challenge.

I made it to the optician intact but exhausted. My wife recognised that I was in no condition to try and walk back to the car, so she set off to retrieve the car and drive the long way around to get it back to the optician’s door.

Suffice to say, that little escapade cost me quite a few spoons.

Scheduling your day

If you are going to pace yourself and conserve your spoons, it is best to have a plan. What should that plan be, and how can you create it?

Relax your Chronic Fatigue
Relax your Chronic Fatigue

The plan should contain a list of tasks you wish to accomplish; check your social media, write a new blog post, complete your Spanish language lesson or set up your Pinterest account for rich pins. Now, these tasks should be prioritised because you will not complete them all.

The above examples are from my to-do list. Yours, obviously, will be different. It is important to be able to focus on one task at a time. Somebody with MS, or any chronic illness, is NOT good at multi-tasking.

I know, I frequently go off at a tangent, and not only fail to accomplish my task, I completely forget about it. With some tasks, that is not critical, but at the end of the day, you know you have messed up. It does not improve your state of mind. And we are trying to find a way to cope with chronic fatigue, not forget about it.

Perhaps, just as importantly, you should set yourself tasks that are important but not time-critical. If you have set yourself goals that must be achieved within a certain time frame, you are putting pressure on yourself, you are adding to the stress that you already experience.

Yes, you need to have tasks that are important, but you know that the future cannot be predicted. You don’t know you will be able to tackle those tasks later today, or tomorrow. You only know that you can tackle this job now!

Why is fatigue a symptom of chronic illness?

It seems to be generally accepted by both patients (us) and doctors (the medical establishment) that fatigue is an inherent part of chronic diseases like fibromyalgia, multiple sclerosis (MS), myalgic encephalomyelitis (ME) and chronic fatigue symdrome (CFS). But there is little discussion as to WHY fatigue should be an inherent part of these diseases.

I found a very brief article on fatigue in chronic disease which not only confirmed my suspicions that the condition is being ignored by physicians, but also provided some tantalising hints that some progress is being made. However, another of my suspicions, the medical fraternity view these chronic conditions as untreatable; because there are no magic pills, pharmaceuticals for them to prescribe or dispense.

I was fascinated and frustrated by the suggestion that studies have identified changes in the brain that could be linked to this central fatigue. So many questions, so few answers.

In Summary

  • Do not overstretch yourself
  • Doing a little is better than doing nothing
  • Relax, do not allow yourself to become frustrated by your lack of ability
  • The harder you try, the less you will accomplish
  • At all costs, avoid stress

A colleague on social media was having a rant on this very subject. Her complaint was hearing people say, time and again: “Oh, I know how you feel, I’m exhausted today too.” Being exhausted or tired on any given day, after a gruelling gym session or a particularly challenging stint of gardening is NOT chronic fatigue or anything like the overwhelming tiredness felt by so many with multiple sclerosis, fibromyalgia or one of the many other autoimmune diseases.

Over to you

Do you manage fatigue in a better way than I do? Then please let our community and I know where we are going wrong. Leave a comment on this post and we will be enormously grateful.

Better still you could #SHARETHELOVE by sharing this with your social media community. This post has been optimised for sharing on Facebook, Twitter and Pinterest. You will find the sharing buttons below the post.

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