MS – When Life Gives You Lemons

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.

Longing

This is the waiting time. Vaccines have been approved and are rolling out with great efficiency in the UK. Yet, not everyone has been vaccinated nor will be for some time. And in many other countries, the process has barely begun.

Spring has teased us with the first, beautiful blooms only to submerge them in snow. The lengthening days start and finish in freezing temperatures. The current lockdown has no end date – only cut off times for some vital government financial support.

Is it any wonder then that I am filled with longing? As I am sure you are: for a return to life without the low level hum of anxiety; of warmth and sunshine; for at least a glimmer of security; reunion with friends and family.

Brave crocuses, tempted out on a fine day, frozen and shrivelled by snow the next. Image: Karen Costello-McFeat

My health situation means that I live with constant uncertainty, a background noise of ‘what ifs’. The pandemic has just been one more layer and though I try to remain a positive person, by last weekend, I felt it all overwhelm me. Longing was turning into despair and despair is not a luxury I can afford. There would be no coming back.

I practised all the things I advocate in this blog. I increased my exercise, my meditation and made more art. I slept in to try and recuperate from disturbed nights. I studied the view, willing myself to appreciate every bud and tree and sky. I turned to my friends for help.

And it worked.

Winter beauty. Image: Karen Costello-McFeat

Standing in the garden, it seemed that everything was dead until I looked more closely. The very tips of trees were in bud. Low to the ground, bulbs were pushing through – some only weeks away from bursting into life. Taking some deep breaths, I tried to feel the garden. It pulsed with life. Like sleeping beauty, it was only mimicking death, waiting for the sun’s kiss of resurrection. And though we can predict almost nothing else: the world will turn, the warm days will come. Spring is on its way.

Come on out! The snow is bracing! Image: Craig Whitehead on Unsplash

Walking in the cold, bundled up like a Michelin man, is a bracing tonic. Like computers, MS sufferers need to be kept cool in order to function, so though the weather is not most people’s ideal, for me it offers an opportunity to extend my walking range. My walking poles keep me from stumbling on the uneven pavements and Jeff and Hermione are good company. By the time I return, I can barely move and my final steps are more leg swings from the hips than true walking. But this burst of fresh air, forcing my blood to circulate and the joy of reaching incrementally further distances makes it all worth while.

Craft production has gone into overdrive. My fractured mind needed focus. Out came the air drying clay, papers for cards and a quirky diorama. Origami stars were made for my granddaughter (she loves them) and plans were made for even more projects. Scattered thoughts were corralled into something productive and rewarded me for it. Who cannot feel happy at a task completed? It doesn’t need to be professional or perfect – just done. Before there were only raw materials. Now there is something!

A magical, miniature diorama courtesy of Flow Image: Karen Costello-McFeat

And lastly, I spoke to friends. For once, I allowed myself to reveal weaknesses – fears and frustrations. And my honesty was met with compassion and practical help. Many of my friends are a bit older and due their vaccinations now, so I thought I would simply ask if they heard of any spare doses to offer my name as someone who would come at a moment’s notice to avoid wastage. Unbelievably, two days later just such a scenario arose and I was privileged to get my first dose. I wish everyone I knew was so lucky and wait impatiently for them to be protected too.

When I was beginning this post, I was determined to find a fissure of hope in the wall of despair; to pry it open and let the light in. As it transpires, that was done for me. I am still longing for the spring and its abundance of flowers. I am still longing for longer, warmer, lighter days. I am till longing to see my friends and chat and laugh in person. But this last week has shown me that miracles are possible and even when they are in abeyance, we have the resources to prevail.

Sea Views

Over the last few weeks, I have been participating in a Wim Hof training course. It provides a non-invasive way to control and perhaps even lessen the symptoms of MS. A key component of the method is exposure to the cold. This can be achieved by taking chilly showers, but I have found a much more enjoyable route to the same end: sea swimming.

So, every couple of days, we rise early and head to the beach. The sun hangs low on the horizon and spreads out an apron of sunlight upon the sea. The silhouettes of intrepid paddle boarders and swimmers dot the waters and, onshore, the newly washed pebbles glisten.

Everywhere I look, there is a magnificent vista. And the only question I ask myself is why I haven’t been doing this before.

Morning sunlight on the sea Image: Karen Costello-McFeat

The psychological blocks

When I tell people about my sea swims, they do one of two things: one – look slightly horrified or two – say that they would also love to go. Sadly, they seldom do. And I understand that. For years, my boys all went sailing and paddle boarding in the most inclement weather (my husband once went surfing when there was snow on the beach) and I would stay at home drinking tea and thinking wistfully that it must be wonderful to be out in the ocean.

Forcing ourselves out of our comfort zone is just plain hard. We tell ourselves that we are busy; the weather is not quite warm enough and that changing on a cold beach is a pain (it is). All these are true, but few things of value are gained without inconvenience.

The rewards

For me, the rewards well outweigh a few goosebumps. The days when we swim, I feel the same excitement I had as a child on holiday. Sea swimming is, quite simply, exhilarating. Unlike the pool, there is no danger of being crashed into by inconsiderate swimmers doing diagonal backstroke, or being dive bombed my energetic teens. There is no sting of chlorine or the babble of voices booming around the echo chamber that is the municipal baths. There is only the gentle plash of the waves and the call of the gulls overhead.

Come on in! The water is lovely. Image: Jeff Costello-McFeat

For anyone with a disability, swimming is often the only aerobic exercise one can do. However, getting in and out a pool is not easy and asking for the hoist is embarrassing. Then one has to negotiate the slippery floors of changing rooms. Getting in and out the sea is much easier and I have my husband to help get me there and to change afterwards.

Another benefit is that the sea is cold. MS really is not compatible with heat, and my local pool is positively tropical. In the cool of the ocean, I am able to exercise far longer and more easily. The result? I complete my swim energised and fitter – a double win.

Aesthetics

I am a great believer in the healing powers of natural beauty, and I can think of almost nowhere that could compete with the views the sea commands. Looking out to sea, there is the enchanting image of sunlight dancing on water and above skies stretching to eternity. Clouds form and reform in an endless choreography of vapour. On bright, early mornings even the moon is visible – a chalky disc set in the blue.

The shoreline is delightful too. When far enough out, the deep green Downs with their ghostly white faces undulate far above the water. They serve as reminders of the land the sea has given up, but will reclaim again.

And scanning the promenade to the headland of Hastings, there are the pretty gardens, the elegant hotels, the bandstand and the pier.

Eastbourne – early morning Image: Karen Costello-McFeat

A word of warning

The sea is truly sublime – in Burke’s Romantic sense. It evokes feelings of awe, but also of terror. As with all wild places, there is an element of risk that makes it more appealing. The sea may beguile us with its beauty, but we should never underestimate its power. Calm seas may conceal strong currents; waves can catch us unaware; we may not be as strong a swimmer as we think.

Since I can never be certain that my MS won’t suddenly decide to make my legs stop working, I always swim with my husband close by. He is happy to circle me like an amiable shark and I am definitely more confident with him by my side.

Having extolled the virtues of the cold, I should be honest about its downside. Sea swimming is best enjoyed at a leisurely pace. It’s important to let your body acclimatise to the cold without rushing in (especially on hot days). A rash vest provides a little more warmth and a wet suit more still.

It is important to keep swims to a moderate length. Fifteen to twenty minutes is perfect for us. Any longer and we start to really feel cold and it is difficult to warm back up on a beach in the early morning. If you start to feel warm when swimming, it is a danger signal and you must get out immediately. It means that hypothermia has set in. Nature gives no quarter. It is magnificent, yes, but also deadly. It is as well to remember that.

A healthy habit

My morning swims have become a habit now. Though I know there are a few hardy souls who swim all year round, I suspect that come winter I shall return to my exercise bike.

While I can still do it though, I intend to continue as long as possible. The benefits that have accrued are impressive. Swimming in the sea requires all your concentration and thus acts as a sort of meditation. It is exercise, but never monotonous or dull. Each swim will be as different as the ever shifting tides.

A good swim will pretty much ensure a good night’s sleep – a boon for all of us. Studies have shown that cold water swimming can improve mental states and create greater resilience to infection. As a method for improving health, it is difficult to beat.

So I encourage you, while this delightful summer continues, to dig out your swimwear and take the plunge.

I Get by With a Little Help from my Friends

‘What do we do when our hearts hurt?’ asked the boy.
‘We wrap them with friendship, shared tears and time, till they wake hopeful and happy again.’ Charlie Mackesy

Everyone needs friends. Of course, they do. But when you are dealing with adversity, illness or disability this need becomes more urgent. Further, we need friends who will stay the course – long after the first flowers of commiseration have faded and the cards have been taken down.

We need friends years later, who are willing to keep and eye on us and are empathetic to our changing situation. Supporting someone going through a bereavement may well take months; supporting someone going through an illness, likewise, but supporting someone with a chronic and degenerative condition means a life-time commitment. Some will not be able to manage that and although any help and kindness is appreciated, especially in the first, terrifying weeks of diagnosis, those who are with you throughout are what sustain you.

True friends are there for the whole journey Image: Photo by Joseph Pearson on Unsplash

Asking for help

The thing I struggle with most is asking for help, even from those who have proven themselves willing! I’m not sure why I (and others) are so bad at this. No doubt our pride is dented a little and our inabilities make us feel small, but that said, we do need aid and we need to find the courage to ask for it.

One thing that assists me with this is having friends that are utterly straight-forward. If they are free, they’ll help; if they are not, they expect me to ask someone else. This frank approach is excellent for everyone involved. I know that I am not putting someone out with my request (and thus subject to the guilt of the being the beneficiary of self-sacrifice) and if they oblige, they are doing so freely and happily. This way, I can accept their kindness gladly.

Two heads are better than one

Another truism, but an important one. Often when struggling with new situations our minds are so crammed with craziness that we literally can’t see straight. Solutions elude us. Everything is overwhelming. This is when we need to call in our friends. With an objective eye and a caring but independent perspective, they are often able to unravel even the most complex Gordian knot.

For some time after my diagnosis, I was terrified of using the shower, which was in the bath. I had some temporary grab bars, but they had an unfortunate habit of slipping and the new shower wasn’t going to be fitted for months. Even with a bath mat, standing without support was difficult and the hot shower would often make me feel a little faint. My brain instantly rushed to images of me falling out the shower and banging my head and being left undiscovered till the evening. My husband works long hours and my children have left home. So what could I do?

A kind friend offered to phone to check I had left the shower safely every morning, but really this was too much to ask, but it did lead to a solution. My husband would call at lunch-time and if I didn’t answer within a reasonable period, he would contact my neighbour who had a key. It was a simple and elegant solution and the daily terror of the shower evaporated.

Help near at hand

Depressing though it is to have to make contingency plans for falls and accidents, it is something that we should all consider. When my friend was asked to take someone to A&E after a bad fall whilst running, she realised that she had no way of contacting this person’s next of kin. She knew her father lived locally, but had no contact details. When she mentioned this at book club, we all realised that although we knew everyone’s relations personally, we did not have a clue how to reach them.

The solution was that one member kindly offered to make a list (now on my fridge) with everyone’s emergency contact details. Anyone of us could take care of contacting our nearest and dearest. Unfortunately, no-one is exempt from life’s unpleasant surprises, so having friends to take care of some of the practicalities is a great comfort.

Book groups provide more than great discussions; they provide friends in times of crisis.

Making life easier

I am fortunate to be able to do most things myself at the moment, but that said, even simple things often take me longer or cause more fatigue than they would for a healthy person. Having the support of friends has been invaluable in opening up my life. Offers of lifts in the evenings and for longer distances has meant I have been able to maintain a fairly normal social life – though early bedtimes remain.

What would be impossible for me to achieve on my own, is easy with friends. We visit gardens, museums, cinemas and places of interest. Having someone drive allows me to retain my energy for the day ahead. Being with people who are aware of my limitations decreases the stress of being in unfamiliar surroundings.

Living a more interesting life gives me fresh news and topics of conversation. It is also incredibly good for my mental health – by reducing social isolation and pushing back the ever present spectre of depression that takes hold when alone and bored. And of course, offering to pay for petrol, buying a coffee or a meal is an easy way to express gratitude and return a little kindness for that which is given.

Love binds us Image: Photo by Melissa Askew on Unsplash

Friends help keep you well

Most of us are aware that friends are good for us, but perhaps are not aware just how good they are for our physical well-being. Amazingly, in addition to giving us the pleasure of their company, they also:

Make you live longer! ‘Researchers examined 148 previous studies on social links and mortality, which together included more than 300,000 participants. These studies found that measures of the strength of people’s social relationships, from their number of friends to their integration into the community, were all linked to decreased mortality.’ (livescience.com)
Improve overall health. The Mayo Clinic reports that: ‘Adults with strong social support have a reduced risk of many significant health problems, including depression, high blood pressure and an unhealthy body mass index (BMI).’
Psychological benefits Friends give us a sense of belonging and joy in their company. Having them makes us feel more worthy and satisfied. They are also the first people we turn to in times of difficulty and their care and concern can help us get through the greatest emotional challenges.

I’ve got you. Image: Photo by Kevin Gent on Unsplash

Give and take

But friendship does not only go in one direction. Those of us blessed with good friends need to work to maintain them. Whilst I may not be able to do a great deal physically, I am more than able to write letters and emails, listen to worries and hopefully be good company. No matter how busy your life, make time for your friends. You never know when you might need them!

And to finish, I’d like to share one of the most beautiful songs on the subject – Carole King’s You’ve got a friend. Enjoy!