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23 August 2018

Supporting a loved one with MS

A touching and in-depth account of a husband’s experience supporting his wife’s journey from diagnosis to living with MS.

My intention in writing this piece is to be helpful. I would be delighted to think that I had helped other carers by sharing my coping strategies (and some not-so-coping ones) developed over a number of years.

I’ll start by saying I’m not altogether comfortable with the term “carer”. I care for my wife Sophie* and care about her in the loving sense but when it comes to her living with MS, I see myself more as a supporter. She’s the one on the pitch playing against the (supposedly unbeatable) opposition.

I’m on the sidelines giving vocal encouragement when the opposition’s scored a sneaky try (surely that last pass was forward ref!) or cheering wildly when she’s scored a try in the corner after starting and finishing the move with a superb dummy pass and several neat body swerves!

As a couple we said hello to MS in 2000. It got up close and personal with Sophie and so I ended up as the supporter and she became the MSer. Ever since we’ve been trying to say goodbye to what was an unwelcome guest in the first place. We learned early on that our new housemate had some nasty characteristics. Chronic, incurable, unpredictable and progressively disabling; not nice things to have on your calling card.

I will not labor this because if you are a supporter too, you already know the score. If I can offer anything to help you it comes from 18 years’ worth of experience and sharing the coping strategies and hope I’ve gained along the way.

The first year was the most difficult. We were suffused in doom and gloom; fully expecting the worst. The look on the faces of the people we told was enough to confirm our (and their) worst fears. Right then, other than the hug and tissue routine I didn’t have a clue what to do. We read assiduously, but everything we came upon seemed to increase our sense of foreboding. At this point no one and nothing was showing a light at the end of the tunnel.

A learning curve

We did however learn two vital things. The first was at the end of the year Sophie’s symptoms were no worse. And more importantly for the longer term, we found our love for each other to be as strong as it ever was. From the outset it was clear the “we” were in it together.

I have to be clear here. I say “we” were in it together and that’s true to the extent that we had a difficult situation to deal with. However, the fact that Sophie had MS doesn’t alter the “we-ness”.

My feelings of worry and concern were bad enough. I could only speculate on what Sophie was going through. Of course we discussed her feelings and at length. I heard the dry click of worry and anxiety as her mouth tried to utter the words to describe her fear and uncertainty.

But I didn’t have MS. There’s an old saying that to truly be involved in a situation and to have a vested interest in the outcome, you have to have “skin in the game”. “We” were in it together but Sophie had skin in the game. I wanted the best for her of course and for us as a couple. I knew I would work tirelessly to support her and never forsake her – no matter what. That’s what love is, isn’t it?

That’s a short summary of the background. I guess however especially if you are supporting someone who has been recently diagnosed, that what you want to know is how I’ve coped and frankly sometimes, that’s not as well as I would have liked. It sounds odd (even to me) to be writing about “I” but as this piece is aimed at supporters, it’s my own experience and how it might help that counts.

Early traumas

I’m not the first one to say that some of life’s more traumatic experiences turn out later to be a blessing. I can name three. My sister died at age 17 when I was 12; I experienced severe panic attacks in my early 20’s; and in my late 30’s I broke my left leg so badly that amputation was considered.

Let me explain. The death of my older sister resulted in two separate but related spiritual insights, one shortly after she passed away and one around the age of 34. My eyes were opened to a different perspective on the whole “you live, you die, you’re judged and you end up near God or roasting in repentance” debate.

The insight left me with a clear view that life after death is a certainty. Neither I nor anyone else can describe what that afterlife is like, but my sure feeling is that there is no judgment, but kindness and infinite love. If we can replicate those conditions while we are alive on Earth, it seems to me we are creating “heaven”.

Beating the panic

The panic attacks were caused by stress. I was promoted to a management position at a relatively young age. My employers thought I was ready; life demonstrated I wasn’t. The shortness of breath, the palpitations, the feeling that I was going to faint, all said I was going to die and soon. I had numerous medical investigations. All the results were “fit as a butcher’s dog”.

One enlightened junior doctor told me to go out running and see what happened. I said it’s obvious, I’ll die. He then wrote me a note that said he had advised me to run and if I died it was his fault. Almost with the joy of getting him into trouble I ran about a mile (there and back) and lo and behold I was still alive. And actually feeling great!

Around the same time, I learned about a breathing technique that had a calming affect on the body. It was explained to me that I could recognize I was having a panic attack by noticing the changes in my body i.e. increased heart rate, dizziness and quick, shallow breathing.

If I then took long, deep breaths my heart rate suddenly slowed and the dizziness faded away. It worked a treat and as I gained more management experience I found that the attacks completely abated.

I went to have the plaster removed from my broken leg. The trauma nurse asked to see me walking across the room to check my gait. I limped across and limped back. He asked “Why the limp?” “Well, I broke my leg,” I said. He replied, “Yes, and now it’s mended. The limp is actually in your brain. Your belief put it there.”

I told him that my consultant surgeon advised me that I would, over time, develop arthritis. I shouldn’t expect to run or play rugby again and I must avoid anything that might cause further injury to the same leg.

The nurse told me to think about want I wanted to do, see myself doing it and let it happen. Over the next 6 months I did just that. Eventually, I was able to run without any abnormal pain and I went on to do several half marathons and 10K runs and I finished playing rugby at age 44.

That’s a long explanation I know but, in summary, I learned at an early age how important it is to keep in touch with the spiritual side of life. I also learned how to control my anxiousness through deep, focused breathing and that the power of suggestion and visualization are the keys to healing.

How my learnings helped Sophie

So let’s turn to some examples of how all this learning helps me to cope. The visit to the neurologist is almost always touched with foreboding. I need to show Sophie a calm, composed exterior. But I can feel my anxiety level creeping up as we walk down the long corridor in the hospital out-patients dept.

Then there’s the inevitable wait, the examination and the sum up with the neurologist. Throughout I deliberately focus on breathing deeply and slowly.

This is my mind telling my autonomous nervous system that all is well; there’s nothing happening to worry us. Sophie has had bad and good news during these visits. Due to her efforts to be well the news has more often been good. Either way my job is to support her.

Because I’m able to remain calm, I can listen more attentively. Often I will recall a bit of good news or clarify what’s been said in a helpful way.

Last year we had the excellent news that Sophie’s condition had not deteriorated and that given the length of time with no change, it could be said that “with a high degree of certainty” it was never likely to get worse. I wrote down pretty much verbatim what was said. That note has become a “go to” piece when doubts occur.

And occur they do. Having held certain negative beliefs for over 17 years, it can be hard to turn them off. Some of our most testing times happen when we are faced with a symptom that may or may not be MS. Is it an “exacerbation”, a “relapse” or simply a normal pain?

Should we contact the MS team or wait it out and see what happens? These are the times when I’ve felt most isolated. First because I can’t know what it is, and second because I feel distinctly unable to help.

It doesn’t help that at one time Sophie was told she’d had a relapse (by a junior neurologist) and was prescribed steroids, only to be told a year later that it probably wasn’t a relapse by a consultant neurologist. Incidentally, the junior neurologist on the MS team was replaced.

The invaluable support of MS nurses

Having said I felt isolated, I’ve had reason to be hugely grateful to the MS nurses. On occasions I’ve advised Sophie to call them and their input, calmness and reassurance have been invaluable.

So by remaining calm, trying to be rational about where to go and who to seek advice a wobbly situation can be turned on its head. Sophie is also lucky in that she has a number of other professionals she can call on when things become uncertain. There’s an excellent, caring physio; a top chiropractor with a chirpy, caring character and a good GP.

Life’s lessons

My spiritual side tells me that each life is a learning lesson. If that is the case it’s important to think about what I’m learning from these experiences. If asked I would say that love, compassion and kindness are the key behaviors in helping people to be well. Sophie has read extensively on these matters. I’ve read much of the same material and we sit and discuss what we’ve learned and more importantly how we can “live” what we’ve learned.

We’ve been to seminars together, watched videos together and we went on an OMS retreat together. Sometimes we have differing views about what’s been said, but in the end we are sure we are on the right track. All her life prior to the diagnosis Sophie ate healthily, exercised, drank moderately and loved the sunshine. Pretty much what OMS recommends. At times, however, she did experience stress.

When we met I was going through a tough divorce. My ex wife was making life as difficult as possible for me and her (unwarranted) enmity towards Sophie was palpable. In addition, Sophie moved into the ex-marital home and with my two teenage children (my other 12 year old was living with my ex). In short, it was situation where stress was inevitable.

How that played into the diagnosis I can’t be sure. What we are both sure of now is that curbing stress and learning how to react better to it, lead to wellness. Meditation and in particular visualization can radically alter not just the mind but the chemistry in the body – right down to the cellular / genetic level.

My advice to supporters of MSers is find ways to remain calm, listen attentively and be prepared to offer advice or where help can be found. If your MSer is on the OMS Program, consider joining them; it will do wonders for your own health! When they feel anxious or upset be kind and loving; keep a level head whenever possible. And yes, enjoy a glass of wine every now and then!

The importance of empathy

Statistics tell us that more women have MS than men. If you are a supporter and a man, without trying to stereotype, how comfortable are you about feeling and or showing your emotions? I can be seriously rational believing that every problem is solvable with a good logical approach. I’ve also learned that some problems need a more empathetic, caring solution. In fact, if there isn’t an emotional element attached to a problem, it really can’t be described as a problem!

So I make every effort to take some time to think about the underlying emotion I’m feeling in any given situation. I don’t repress any of them but the ones I will not tolerate for long (because they are damaging to the mind body and spirit) are doubt, fear and guilt. Doubt and fear are partners in crime.

They collaborate to rob us of our very will to exist happily and peacefully. Guilt is the very worst of emotions. Feel remorse for something you had rather not done or said and try to put it right if that’s possible.

But finding yourself guilty often leads to the conclusion that you need to be punished. Humans make mistakes, some worse than others. But they also do acts of incredible kindness. Cherish yourself when you’ve done something right and never judge yourself to be guilty when you’ve done something you are not happy about.

OMS and us

I’ve been on the OMS Program for about 18 months. But not fully; I still craved a piece of steak every now and then along with the odd cheeky pie. At a recent retreat however I made a commitment to Sophie, the group and myself to fully engage with the program. That was about 7 weeks ago and so far I kept my promise.

You as a supporter might also be following the program. If not, it is something to consider. The diet is as healthy as it gets; exercise is never a bad thing and the meditation certainly helps to keep you calm and focused. You will not need separate shopping lists, cupboards and recipes. I guess things can be more difficult if you have children at home but it’s worth thinking about.

As a footnote to this just in case I’ve given you the impression I’m just short of sainthood and you’re reaching for the bucket, I must say there have been times when I been shall we say, less than helpful! To use a familiar euphemism, I’ve certainly thrown my toys out of the pram on occasion. I tell myself it’s the frustration of not being able to help.

The outcome is however that the very frustration is rendering me helpless! I usually reach a point of exasperation, go somewhere quiet, get my self together and start thinking about how to frame my apology. Which Sophie always accepts with good grace. We hug, maybe shed a tear or two and get back to loving each other. And that’s just as it should be.

*Sophie and Andy are not this couple’s real names