Tag: fatigue

Running on Empty

At the beginning of this week, I ground to a halt. The endless activity and excitement of the last few weeks (months? years?) culminated in my lovely goddaughter’s wedding. The day was perfect, the bride beautiful and setting exquisite. We caught up with old friends, ate, drank and laughed.

I was sorry to be dragged away at 7pm by my husband who insisted it was time to go home and that only the two cups of coffee I’d drunk after dinner were keeping me upright. He was correct. We reached home just after eight and I quietly expired on the sofa.

My Covid jab the following day proved the coup de grace.

The big sleep

From here on out, with a few forays into the land of the living, I slept. And slept.

I don’t want to get up! Image: Andisheh A on Unsplash

I exceeded all records on Monday when I went to bed at 9pm, got up at noon the next day and returned to bed at 7pm. This was not living. This was simply filling the gaps with nausea filled spaces of exhaustion. Something needed to be done.

Interestingly, in the brief moments when I could concentrate, we watched a wonderful Netflix documentary on How to Live to One Hundred. Though I have no desire to be a centenarian, I was intrigued to see how individuals living in fairly poor communities were able to maximise their lives even into advanced age.

Much of what I learned was not entirely new – but seeing these people enjoying full and happy lives on screen was. Sometimes I feel a hundred. It cheered me to think I might enjoy it also!

Just about managing

Since diagnosis, my life has been an ongoing experiment and I was pleased to see that much of what I was doing was right. However, it was not fool-proof or days like Tuesday would not occur. I was managing, but only just.

If you’d like to read an introduction to Dan Buettner’s research into ‘Blue Zones’ follow this link: https://www.bluezones.com/2016/11/power-9/ .

What follows incorporates some of his ideas in combination with my own.

Self-preservation

This is not one that appears on Buettner’s list and may seem suspiciously selfish. However, it is not putting oneself first in a way that is detrimental to others but rather putting oneself first in order to be helpful to others. If we run ourselves into the ground, even in service, we are no use to anyone.

Don’t forget to save yourself Image: Mark Konig on Unsplash

For me that means allowing Hermione to be a bit bored occasionally; to take time to do things that replenish me; to avoid the suspicion that my only purpose is to please others. Tea can wait; dust can accumulate. No one will die.

Finding a purpose together

Everyone needs purpose in life and for most of us, that means doing something for others – either in the particular or the collective. Everyone who works and pays taxes contributes to the common weal.

But it is often the optional efforts that give us the greatest sense of fulfilment. We may volunteer at an organisation we respect or help someone with their shopping. What we do doesn’t matter. Acts of kindness are always rewarding. They are also boosted from the benefit of social interaction and especially with those of like mind.

Being among friends always lifts my spirits – even when I’m not at my best. Monday morning is my craft group and I crawled out of bed to host it. Everyone arrived full of news and chatter and my fog of exhaustion lifted a little. Jane had brought a project for everyone to do, so I determined to at least attempt it. By the end of the morning I had a great sense of achievement. I’d made my ‘pumpkins’ and could have a rest with the joy of having done at least something with my day.

Fabric pumpkins Image: Karen Costello-McFeat

Because being with those you care about, sharing a passion for an activity is vital for our well-being. And we need to do it in person.

Across the world there are epidemics of loneliness. We are all ‘connected’ but not engaging with one another. This breaks my heart. And whilst there are many who bemoan the statistics, it is up to us to act. We need to discover and support our ‘tribe’. If there seems to be no-one doing what you love, go out and find them. They are probably looking for you.

Down-time

All action all the time will leave you like me, stuck in bed and feeling sorry for yourself. Balance is key.

The good news is that it doesn’t have to be for long. A short power nap after lunch can do wonders for your concentration. Taking time for prayer or meditation brings us back to all that is truly important.

I was horrified to learn that a very successful and busy friend didn’t ‘have time’ for meditation. I suggested gazing out the window for a few minutes each hour to rest his eyes from the computer screen and give himself a well-earned break. Sadly, I doubt he does, such is the pressure always to perform.

Not taking time for rest invariably impacts our health. The time we spend in R&R simply reduces the time we spend in A&E.

Refuelling

In order to maximise our energy levels we need to eat well. The jury is definitely in that a mainly plant based diet is best for our health. I think that we all know this but are put off by the time required to prepare such foods from scratch. Many of us are not really sure how to cook, either. But there are ways to make life easier (and as someone who doesn’t have the energy to spend hours in the kitchen) these are vital.

Light and easy Image: Karen Costello-McFeat

Batch cooking is definitely the way to go whether you freeze the remainder or enjoy the next day, but fresh food can be prepared ahead too and kept quite happily for a day or two in the fridge. The colourful plate above took just minutes to assemble since the coleslaw was the last of a large bowl, the salad also, the baked courgette left-overs, which left me only to cut an avocado and peel and slice a kiwi. Such a meal fills you up without going overboard with calories. The perfect balance.

With plant-based cooking the latest fashion, it isn’t hard to find delicious and easy recipes. I’ll try to include some plant based inspiration in a future blog.

Keep moving!

Once you have your energy back, it is time to get moving. Buettner’s research made my day by suggesting natural movement is every bit as good as more obvious exercise like attending the gym. There is hope for me yet. Physical abilities and low energy levels severely restrict what I can do. That said, I think I may have found a solution. Poco a poco is what works for me.

Housework is a truly good workout, as is gardening. However, if I overdo it on either (we’re talking less than an hour here) I end up back on the sofa. So I am trying (and not always succeeding) into breaking tasks down into small units – just dusting one room, taking a break and doing another. It is painful being so slow, yet if I achieve multiple tasks in a day, I have the same result as a blast that exhausts me.

Ironically, not making life easy is the best thing for you: to walk rather than take the bus; to wash the dishes rather than use a machine. Simple and repetitive jobs give us the workout we need whilst achieving something worthwhile.

My fog of fatigue hasn’t completely lifted yet, but I’m getting there. I’m hoping that if I can follow my own advice, I will have a little in reserve for more challenging days.

Not All Disabilities Are Visible

A symbol of joy; a reminder to care Image: Aaron Burden on Unsplash

A confession: Before I was diagnosed with MS, I would often see people exiting their cars in a disabled bay and tut disapprovingly. There was obviously nothing wrong with them and I supposed they were abusing the blue badge they had somehow acquired. In one or two cases, I may have been right. However, rather more likely is the fact that their disability wasn’t visible to me.

As someone who’s disabilities are almost all invisible, I feel rather mortified that I simply assumed the worst in the past. Now I am the one who gets the suspicious looks when I place my blue badge on the dashboard. After all, I look fine, even very healthy.

MS is only one of many chronic conditions which conceal their symptoms. It does not mean that those symptoms are less painful, distressing or disabling. And these concealed symptoms are invariably the most difficult to explain to others. Very often they are misread or dismissed, because they are not manifest in an obvious way. This blog is an attempt to remedy this so that when we meet people with other chronic illnesses, we will perhaps be a little better equipped to understand them.

The twelve hour day

When I say I have a twelve hour day, I do not mean that I work for twelve hours, rather that I am awake and functioning for twelve hours. This can be hugely frustrating, as I’d love to have the same number of waking hours to enjoy as everyone else.

The reason for this, as for most people with MS, is fatigue. This is not tiredness and does not correlate to a period of busyness. (Though if you are busy, expect the fatigue to be ten times worse later). MS fatigue can strike at any time without any obvious reason. It’s worst for me when I get up in the morning after ten hours’ or more sleep. Sometimes I am happily doing a task when all my energy drains away leaving me dizzy, exhausted and sometimes even nauseous.

Any horizontal surface will do Image: Abbie Bernet on Unsplash

The best way I can describe this condition is to say that for a well person it is like going on a long-haul flight, getting drunk and then suffering from jet-lag and hang-over simultaneously. Tiredness is unpleasant; fatigue is revolting!

At its worst, I am left effectively paralysed, unable to even lift my eyelids because the effort is too much. Most of the time, fortunately, I feel its encroachment and go and lie down. That said, for someone who likes to be fully engaged in the world, endless hours on the coach unable to read or do anything but stare at the sky is rather frustrating.

There is a lovely young woman who comes to the puppy park who suffers from ME (chronic fatigue). Her visit to the park (she drives) is her main activity of the day and a chance to speak to others. The rest of her day is mainly spent in bed. Her friends think she is lazy.

And sometimes, this is the worst part. When we are made to feel lazy, we feel guilt at not working or doing enough. Though we know such options are not available to us, this simply adds to the sting.

Counting spoons

One young woman has written an essay, much repeated and referenced, in which she compares having Lupus to having a certain number of energy units in a day – spoons. Her number of spoons is much more limited than a healthy person’s and she must decide every hour of every day how to spend them. This practical way of showing how quickly the spoons can be used up (having a shower and washing your hair or making a meal for example) helps illustrate an intangible. I’m giving a link to the whole essay here, as I think it is excellent. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Seven spoons – seven activities Image: Joanna Kosinska on Unsplash

Miserandino’s article is neither whiney nor self-pitying. She realises that when one’s time and energies are that precious that you do not squander them. I too am desperately aware of how I need to make each hour count and this can be a blessing. Most folks wander about in a kind of somnambulistic stupor imagining that they have all the time in the world to do what they want and wasting great swathes of it. Fatigue focuses the mind on the essentials and I have found that I experience life more deeply and gratefully as a result.

Physical limitations

One of the most confusing aspects of MS is that there is variation in our physical abilities. So if you were to ask me, ‘Can I walk?’ I would have to say yes and no. Yes, I can walk for a certain distance before everything starts to stop working. (This it the point where I walk like a drunken sailor and crash into people). I may begin with a normal gait and good pace, but I’ll invariably end on a bench.

How can I explain this? My best approach has been to suggest that one views my lesions as roadblocks, because that, crudely, is exactly what a lesion is. It is scarring on the myelin sheath that disrupts the nerve signal. (The greater the number of lesions, the greater the number of road blocks – hence the wide range of abilities amongst MS sufferers.)

This is going to take some time Image: Erik Mclean on Unsplash

For me to walk from A-B, my brain has to take all sorts of circuitous routes to keep my legs doing what others do naturally. If I were a car going from Eastbourne to London, I would detour to any number of little villages and towns in between rather that taking the direct route. So my little walk feels much more like a twenty mile ramble, with the subsequent exhaustion and leg pain. The same applies to mental activity. Even a lunch out with friends can prove debilitating.

That said, I am a firm believer in neuroplasticity. If I can keep channelling my nerve signals through the healthy pathways, I can, in time, recover something of what I’ve lost. This is how I can walk a little further and function a little longer than I have in previous years, despite the natural effects of ageing. It does require a great deal of effort on my part, but the outcomes more than compensate.

Can you see my pain?

Well, no. Pain is, by definition, invisible and it comes as a surprise to many that it is a very real element of MS. My legs give me most bother and I have finally found some medication to help with that, though the pain never really goes away and is exacerbated by activity. For others, their pain may manifest in crushing headaches, neuralgia or back ache. On its own, pain is unpleasant, but when it is chronic – and at times acute – it can be terribly wearing. Keeping a cheerful disposition and not succumbing to self-pity and depression is a constant battle.

MS has many other invisible symptoms that I do not have time to mention here. Everyone’s MS is unique to them and no two are likely to have the same experience. So if you know someone with a chronic condition, it is best to ask how it affects them rather than basing it on others you might know. One might be running marathons, the other bedbound.

Invisible disabilities are hard to grasp – even for those experiencing them – but if we take the time to listen and learn from others, I hope that we shall be more understanding when we see that fit looking person exiting a disabled bay. And if you see someone wearing a lanyard with sunflowers, you’ll know that they are dealing with much more than meets the eye.

Journeys of Discovery – 2

In the last post, I looked at the why of travel and in this one, I’d like to look at the how. When you are disabled, journeys take on a whole new character. Spontaneity is definitely out. Every journey needs to be planned with the attention to detail normally reserved for a space launch. Though not everywhere will be accessible, there is more than enough that is. The trick lies in being prepared.

God bless the National Health Service

My cancer is in remission and my MS behaving very well at the moment, but I am aware that either of these may change. Travelling within the UK means that there is always a hospital nearby should things go awry and a doctor who will understand my problems (and who I will understand).

Medical help when you need it. Image: Photo by Online Marketing on Unsplash

Knowing this means that I travel without the added anxiety of ‘What if things go wrong?’ If they do, I shall be treated with the same standard of care I would receive in my home town. This is not to say I shall never travel abroad, but travelling within the UK is certainly less stressful.

Medications

By following the OMS programme, I have had the good fortune to not need any medications, though most folks with MS do. Many of those drugs require refrigeration and this must be factored into accommodation requirements.

One of the many complications of a chronic condition is that even minor ailments can escalate rapidly. MS makes it more likely that you will suffer from urinary tract infections and to add insult to injury, these (and many other infections) may prompt a ‘pseudo’ relapse. Though you should recover fully once the infection has been overcome, longer term damage may occur. As a consequence, I always take a course of antibiotics with me to avoid any risk. My GP was more than happy to oblige me in this – and I’m sure yours will be too!

Ensure you have sufficient medications and supplements for your stay Image: Photo by freestocks.org on Unsplash

Mobility

Without question, the most infuriating aspect of my condition is the inability to walk any distance. I’m blessed with the strength to toddle about for a while, but soon my legs will start to feel painful, then stiff, my left foot will drag and then refuse to work at all. How long or how little I can manage varies considerably and I need to be prepared for the worst.

There are numerous mobility aids on the market to help, but like medicines, they come with their own side-effects. Each of these can be minimised with a little research and testing.

Walking Sticks

Most of us will need a stick at some point when placed in unknown surroundings and for many, this is all they will need. Keeping a fold-up one with you is a sure way to avoid the horror of discovering that the parking (even disabled bays) are further from your destination than you thought!

When I was first given a stick, it was an old-fashioned wooden one. The physio checked it was the correct height, but it was not the correct style for me. My hands and wrists soon began to tire and ache. Some kind soul mentioned that I should get an ergonomic one with a wide handle. Though not so common, they are easy to find. Just make sure that you get the correct one if you are left handed!

Wheelchairs

I have a wheelchair, but it is not something that I use very often. Unfortunately, the lighter, travel ones do not fare well on uneven surfaces and I keep mine for airports and museums. Nor do I like the fact that, since I do not have the strength to propel myself, I require someone to push me. I can’t say that I enjoy the loss of independence this entails, but it has enabled me to see some fabulous exhibitions in comfort.

Mobility scooters

My absolute favourite aid is my mobility scooter. Do I feel self-conscious tootling about like someone twice my age? Yes, is the honest answer. Would I rather stay at home? No.

I found an off-road one that would happily carry me around the paths of any National Trust property. This is a bit of a cumbersome beast, however, so we need to take the car to transport it and my husband needs to be with me to lift it in and out and assemble it.

Finding what is right for you is crucial. The internet is the perfect place to start to find out what is available and then I’d recommend going to a large showroom where you can try things out.

If budgeting is an issue, there are always second-hand options available. Your local MS group would be the best place to start a search for reputable providers.

The advances in mobility aids are staggering. A friend of mine has a wheelchair that can go up and down steps, on the beach and well, wherever. The price tag is rather beyond my budget, but it is good to know these things exist should my Premium Bonds come through.

https://youtu.be/0vIn43FOfN0
The future is bright!

Exhaustion

Exhaustion in MS is an invisible disability and for me has been the most bothersome. There is not much you can do when you can’t wake up.

Following the OMS life-style has helped minimise this, but I do need to figure in rest days and naps to keep me going. Sometimes the excitement of travel means I go far longer than usual without additional sleep – but when I get home, I need to clear the diary and sink into oblivion.

And an invisible disability is a disability all the same. Though few people will understand, it is vital that we express our needs without fuss or complaint. It is easy to be bullied into doing more than we are able and suffering the consequences of hours or even days in a fog of exhaustion.

Toilet stops

The joy of the UK is that there are always service stations, cafes or public toilets nearby. Yes, MS affects most people this way too! So, we factor in very regular stops. An added benefit is that it enables us to stretch legs and reduce the stiffness that accompanies sitting for long periods. It means that journeys take a little longer, but they are certainly more enjoyable.

Heat

Someone very wittily remarked that heat to an MS sufferer is like Kryptonite to Superman. When I was first diagnosed with MS, heat didn’t seem to affect me at all and I enjoyed hot baths and showers and sitting in the sun. Not any more.

An MS sufferer’s worst nightmare – blazing sun and no shade. Image: Photo by Keith Hardy on Unsplash

My intolerance to heat is now so marked that I actually take a cold shower after my hot one, because I came to the realisation that it was the heat exhaustion prompted by my morning shower that left me having to lie down less than an hour after I had got up.

Choosing destinations for holidays is therefore extremely important. You are unlikely to enjoy a trip to Southern Spain mid August burrowed in the dark of your hotel room. The up-side is that travelling off-peak is ideal and holidays in the UK perfect.

Accessibility

Check and check again! There have been a number of times that I have visited locations that claim to be accessible and find they are not or that only certain paths and the cafe are!

Access all area! Image: Photo by Yomex Owo on Unsplash

The UK is generally very good at being genuinely disabled friendly and most places will make real efforts to allow you as much access as feasible. Just don’t be afraid to ask. Portable ramps are often kept out of view, but they do exist and guides are really good at telling you what is accessible and where there are places to rest. I have never been treated with anything but kindness.

Some places go even further – providing regular and off-road wheelchairs, scooters and guided buggy tours. These resources are limited though, so always check/book before you leave home!

Modes of Transport

I confess that I rely almost entirely on the car for my transport in the UK. Although I know that systems are in place on trains and buses for the mobility-limited, they just don’t work for me. To reach almost anywhere, I need to negotiate London and the mere thought gives me palpitations. I shall try to be more brave!

The Grand Tour

Travelling with a disability sometimes makes me feel like an English gentleman on a grand tour. The car is packed with mobility aids, suitable clothing for all temperatures, emergency food supplies and supplements. I require a driver, helper and companion (roles my husband fulfils admirably!) Thus equipped, I am ready to go anywhere. This country contains far more wonders than I could possibly visit in one life time and the natives are definitely friendly.