Supporting a loved one with MS

August 14, 2018

supporting a partner 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 wish to be free from 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 suffer 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 Recovery 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 Recovery 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.

“Andy Dufraine”

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

17 thoughts on ‘Supporting a loved one with MS

  1. We are going through the first year of diagnosis and waiting for the first MRI and it is getting very scary. It’s good to see we aren’t the only one’s feeling this way and its “normal”. Your story is inspiring and I would love to see more supporter stories (hate the word carer!)

    Best of luck with everything in the future!

    • Hi Jim,

      Thank you for sharing. We can only imagine the difficulties and worries you and your partner are facing at this time. It is really interesting to hear that quite a few people dislike the word carer – I guess that it comes with certain, unintended connotations. Best of luck to you and your partner as you go through the process of diagnosis. Please reach out to us if we can support you in any way. Best wishes, Laura, OMS team

  2. What a wonderful piece of writing Andy – insightful, sensitive and inspiring. My partner was diagnosed about 14 months ago at age 29. It was a complete shock as I’m sure you can imagine. Your comments about wanting to support with your whole heart, yet feeling like sometimes you can’t truly understand as you aren’t the one with the diagnosis really resonate. Given we are writing about ‘i’ whih is unusual as the ‘supporter/carer’, here’s my personal reflection – I’ve found it difficult to organise my own support system as my partner does not want to share his diagnosis with anyone. This makes it difficult at times as I would love to have another person to share my anxieties and worries with. On a positive note, I’ve joined my partner on the program from day one (about a week after his diagnosis) and agree it’s easier to go into it together for many reasons! Plus now we have so many delicious meals and treats and are healthier for it! Good luck as you continue your journey and thanks again for sharing your story.

    • Hi S,

      Thank you so much for opening up and sharing your comment with us here. It is wonderful to hear from partners like you and we hope to do more to better support the supporters/carers in our community. Best wishes, Laura, OMS team

  3. Hang in there Jim! the good news is that if you read this you and your partner are already on or buying into the OMS programme. All the pointers are that the earlier one starts the better. It wasn’t around when Sophie was diagnosed in 2000. Luckily however her general lifestyle was programme orientated. She’s doing amazingly well and does something everyday that makes me proud of her attitude and sheer determination to succeed. When she discovered the OMS programme it was a revelation to me too. I suddenly had a “friend” fighting alongside me in my trainer’s corner while she was in the ring.

    Just to say that I chose the “Andy Dufrane” name from The Shawshank Redemption. A film stuffed with good quotes. On the film poster the strap line is “Fear makes you a prisoner; but hope sets you free.” I’ve never stopped hoping and believing – some times right in face of fear. It’s a good way to be!

    Best wishes, Andy

  4. This is a lovely story. I myself have bee diagnosed 2years this coming November, and recently embarked on the diet. I’ve had a few slips, but after reading your story and inspiring me I’m going to give it 100% from tomorrow.

    • Hi A27, that is great news! We are glad to hear that this story has inspired you to stick to the diet 100%. Those who do so really do see the best results. Wishing you all the very best. OMS team

  5. I am reaching out as someone who is at the depths of despair as having been left to face this on my own. Hats off to you for being so strong and inspirational. Unfortunatey my former ‘life’ partner couldn’t take the heat so kept on running. I have had to learn to be strong and let him go as it is my battle, not his.

    Wishing you both the very best

    • Hi Nicki, we are so sorry to hear of your circumstances. If there is any way we can provide you with more support, please let us know. Kindest regards, OMS team

  6. Jim – year 1 IS scary. The worst times are when the irrational thoughts take over and run amok. OMS will help you deal with this, and you will find levels of patience and acceptance that are hard to imagine. But stick with it. Progress is very slow but very steady. When you can evidence a small sign of success, draw hope from that and a magical virtuous circle will start to form. Believe it’s possible as Andy has said and you will get there.

  7. Hi, I have had multiple sclerosis for many years and your words of caring, support and help is inspiring.
    Thank you
    David Peimer

  8. Hi, to add, in the early days it is a terrifying disease and that does not really leave us, but the Over Coming Multiple Sclerosis approach really helped me and the love, support, care from a close person is the best support. Thank you for your honesty. My multiple sclerosis has been up and down for years.

    Best thoughts
    David Peimer

  9. Thank you Andy for your beautiful loving story. After 18 years of MS with the help of my loving wife dedicating her life to me, could not stop the tears coming out all along I was reading.
    Thanks again, love Max

  10. Hello to everyone who has kindly responded to my story.

    I am slightly overwhelmed by the comments and thoughts. They make me realise how valuable it is to have the opportunity to empathise with and support PwMS and those who share their lives. I cannot praise the OMS team enough for making this and so many other things possible. For many years I watched Sophie battle courageously and with some success against her opponent. It was like seeing her in a boxing ring giving, taking and dodging the blows from a cunning adversary. While I waited in the corner with a towel and cold water for recuperation between rounds. About 2 years ago we found the OMS recovery programme and soon realised there was now a second person in our corner. A wise old head that offered Sophie and me a different approach to facing down the opponent. Not only that they also said the rules had changed. The fight was no longer hopeless; MS could be beaten, stopped in it’s tracks and eventually overcome. The first change we made was to cut out dairy completely. We had always meditated and exercised but now we did so with a renewed focus and a greater sense of purpose. Sophie had her Vit D levels checked and took remedial action when they were too low. The results have all been positive. Sophie still has issues with her state of mind when occasionally anxiety gets the better of her. However she is convinced (as I am) that sticking with the OMS programme is our way forward. One of my favourite songs is James Taylor singing “You’ve got a friend”. Whenever I hear that song now I think of OMS; not just our friend but part of the family and the way we live.

    Thank you all again for your comments and thoughts. Stay positive and be well. Kindest regards, Andy.

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