MS: In sickness and in health, until …

I just love the image on an MS sweatshirt that popped up on Facebook the other day.

The central graphic is the orange MS ribbon flanked by a pair of angel wings. Above it are the words:

Someone said to me “I don’t know how you do it”

Below, it says:

I replied “I wasn’t given a choice”

loved onesThe graphic had such an impression on me that I was considering buying one for my beloved wife Lisa. But then, the message wouldn’t match reality as she DID have a choice.

Unlike most people whose loved ones have MS, or any other chronic illness, Lisa was fully aware that I had the disease well before we were married. In fact, well before I proposed.

The majority of spouses only learn of their loved ones’ diagnosis when they themselves do. Many stay to give care alongside love but some end up leaving as the strain becomes too much.

This was brought home to me by a piece published online by multiplesclerosis.net, written by Devin Garlit.

This is the beginning of his article:

So I’m sitting here, just flabbergasted that it’s happened again. For the third time in just this month, a fellow MS Warrior has confided in me that their significant other is leaving them because of their disease.

This is not a new occurrence, I’ve had many people reach out to me with similar stories, particularly after I wrote about my own experience with the subject

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Many platforms are quick to share stories of wonderful relationships that endure despite MS, but it’s clear that many times, things go a different way. In fact, every breakup that I’ve heard about was often a “solid” relationship until it wasn’t. 

Being the partner of someone with MS, especially as the disease progresses, isn’t for everyone. A chronic illness is the ultimate test of a relationship, a test that not all will pass. I’m here to remind you that it’s ok when this happens, that you aren’t alone, and that life is far from over if that test fails. 

When it comes to marriage, people are quick to point out vows, and how they often explicitly mention this scenario. It’s right there right? “In sickness and in health” A vow is forever, right? Well, yes, that’s the idea. But in practice, it doesn’t always work out that way.

Let’s face it, a lot of people break vows. I’m not saying that’s ok, I’m just pointing out the reality. No matter how much you believe in vows, you can’t always be prepared for what it takes to be with someone with a chronic illness.

When you take those vows, your intentions may be great, but you simply can’t understand what life might be like. How many people have been tough guys during training but have gone to war and were suddenly not-so-tough once the bullets started flying? I’m guessing many.

 What would you do?

It’s always easy to point to vows and say, “but hey, they promised”. The truth is, none of us can say what we’d do in that situation. Many of you are saying, “oh, I’d stay by them, I’d stick to my vow”. 

Well, yea, I say that too, but, I also know that, until I’m in that situation, I can’t really be sure what I would do.

You can read Devin’s complete article here.

I applaud all spouses, partners or ´significant others’ for staying with their loved ones in their time of need. Likewise, I sympathise with those who cannot see that journey through.

My beloved Lisa.

In my case, Lisa is amazing and loving. She loves me as I love her. She gives me 24/7 care but says she does what she does for me as my wife, not my carer.

Add to that, my sweet angel not only knew I had MS but also had prior knowledge of it. Her grandfather also had the disease, and she knew how it might progress. So, that sweatshirt wouldn’t be right for Lisa. She DID have a choice. Her eyes were wide open, and she still agreed.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Wife who is carer is really a wonderful, loving, angel

It’s been an eventful few days for the two of us at home here in Spain.

On Saturday, nine days ago, my beloved Lisa asked me to help put the washing out to dry. It’s an easy job that I can do sitting down, so I readily agreed. The trouble was that it was not one of my best days. Thanks to multiple sclerosis, I managed to fall while walking out of the back door onto our terrace.

I still have no idea how but the nail of the big toe on my left foot was torn upright. It was 90 degrees from its usual position. There was pain and blood – and plenty of the red stuff.

carerMy wife Lisa is also my carer and is quite used to me spending time on the floor and could not see my injury, so she didn’t rush to my side. But she certainly arrived fast enough when I told her what was wrong.

In next to no time, she had stopped the bleeding and strapped up my toe. Luckily, once bandaged, the pain eased so that it only hurt if touched.

Wife and carer is an angel

A couple of days later, I visited our doctor. He removed the dressing and the nail came off with it. The wound started to bleed again but he quickly stopped it and sent me to a nurse to get it redressed. That started a series of one visit every two days, something I had to get used to here. The Spanish health service goes the extra mile to see that patients receive the best treatment.

However, these regular visits to the health centre are putting more stress on Lisa. Lifting my electric wheelchair out of, and back into, our car is a task that should not be repeated often. Meanwhile, at home, she is doing virtually all the work. She is my carer and refuses to ask me to help in case I am hurt again. In fact, while doing anything involving standing or walking is difficult, I try to do what I can.

One thing though, Lisa is always so grateful for whatever help I can give. But all she does for me makes her even more than my loving wife and carer.

She is my wonderful, loving, guardian angel who walks here on earth.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Features Writer with Medical News Today. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

MS Love and Care, as Only a Superwife Can Provide

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Thoughts of love were brought to the forefront of many people’s minds on Valentine’s Day, which is widely celebrated by couples both young and not so young. They usually buy cards and enjoy romantic dinners.

In our case, Feb. 14 also is Lisa’s birthday. So, to me, that is more important. We went out for her birthday meal — in fact two — lunch and dinner. And very good they were, too.

loveBut that got me thinking, Lisa is my wife and, as I have multiple sclerosis, also is my carer. However, she says that whatever she does as my carer is only what any loving wife would do for her husband. And, while I can see that is true to a certain extent, it actually goes further.

There can be little doubt that wives, or husbands, of people with MS do have to contend with more than those of people without a disability. Lisa, for example:

  • Provides extra support while I walk a little outdoors;
  • Gets my wheelchair in and out of the car;
  • Helps me to get up after a fall;
  • Deals with extra laundry if my bladder problems cause an accident;
  • Takes full responsibility for my medications, ensuring I take them at the right times;
  • Does all cooking, because I cannot do so safely;
  • Does all cleaning and other housework, because I cannot stand up long enough to help. (I do what I can sitting down);
  • Helps me shower, especially below my knees;
  • Helps me to dress as I cannot fasten buttons, tie shoelaces or do anything that requires manual dexterity;
  • Is my personal manicurist and podiatrist, taking care of my fingernails and toenails, because my weak left hand is incapable of cutting the nails of my right hand, and I cannot bend forward enough to deal with my toenails.

Lisa maintains she does nothing special and it is all part of being my wife. She says she does it because she loves me. Well, I can see her point, but I also have my own opinion: The additional work of a carer requires something more than a wife; it needs a Superwife. Yes, it involves love too, the type of love that involves being prepared to do anything. Lisa is such a Superwife with that deep, committed love. I am so blessed to have her by my side.

How does your wife, husband or partner care for you? I’d love to hear and share your story.

This article, written by me, was first published by Multiple Sclerosis News Today.

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ian-skype_edited50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/disorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

Sharing life of caring wife of husband with MS

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Today, I have handed the writing over to my wife Lisa to talk about caring for a husband with multiple sclerosis.

Lisa writes:

Yesterday was a special day as Ian and I celebrated our wedding anniversary and enjoyed a lovely meal out in a great local restaurant here in Spain.

With Ian reaching his 64th birthday next week, and me being a few years younger, it may be surprising that yesterday was only our fifth anniversary. We have, obviously, both been married before.

carerI knew that my beloved had MS well before we tied the knot and knew what that could mean for both of us because my grandfather had it too.

As I am Ian’s wife, being his personal carer also falls to me. But that is not onerous to me, after all we are deeply in love and have a great sharing life; what I do as a carer is not a duty but a labour of love.

So, what is the care I give on a daily basis? There are actually too many to list in detail but I’ll just touch on the major ones.

Personal care

  1. Fastening/unfastening buttons
  2. Helping to shower
  3. Personal grooming

Living

  1. Preparation of all food and drinkH
  2. Cutting up anything large into bite-size pieces as Ian cannot hold both a knife and fork
  3. All household cleaning
  4. All laundry, including washing extra clothing because of bladder problems

Mobility

  1. Getting wheelchair out of and back into our car
  2. Pushing Ian about in his manual wheelchair prior to him getting his new electric one
  3. Helping him when walking using his cane

Then there are the times when Ian takes a tumble, whether by tripping or just his knee giving way. Generally, he manages to fall without hurting himself and, through determination and tenacity, somehow manages to get back to his feet unaided.  But there are certain times that he needs my help – and I have to be on hand to provide it.

Oh, yes, one last thing, the two of us have an agreement that when anything concerns his health, I have the final say.

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50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

Wheelchair partners – from ‘my rock’ to hard places

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Wednesday’s question about staying with a partner who used a wheelchair was quite enlightening with a much greater response than expected. And, while the ‘research sample’ was not representative of society as a whole, it certainly brought out some personal tales of love and others of sadness.

I am not a researcher or a statistician so there will be no attempt to analyse the answers in terms of numbers. Detailed facts and figures are not what we need, it’s more an impression.

When looking towards the future, most people answered that they would stay but those that spoke from experience had both happy and sad stories to tell. Here are just a few:

Keith: My ex waited for my final diagnosis .. 34 years down the pan ..lol

Sarah: Damn right I would, I waited 29 years for my man, and I would never leave his side xx

KD: That’s a great question, because I’m the woman in the wheel chair, and had meets with my cane, and they told me they didn’t date women with canes…. I haven’t bothered to try and date now that my legs are going.

Simone: I would, but my ex-partner didn’t… 😦

Helen: My husband is my rock since I becoming paralysed… If anything it has made our relationship stronger…

Jesse: My wife just left 2 months ago.

Maggie: I DID STAY….RIGHT TO THE END. AND WOULD HAVE HAD IT NO OTHER WAY….MISS THAT GUY SO MUCH…

Karen: I have given my husband the option to leave on several occasions. so far he has stayed but I know he has considered leaving.

Antonio: 33 years she has stood by my side, led, had my back . . .she has pushed and pulled when we needed to. . . so I would without missing a heartbeat!!

Janice: Mine left me to fight this mostly alone except my Dad, Stepmother and Stepsister that isn’t including the dogs Including MY dog.

Tami: Many of you are VERY blessed! This is my 2nd marriage; I’m not sure if he’s on his way out or if I’m giving him the push that he needs to “go”… I just know that it’s happening because I can’t stand the thought of making him stay & I feel HE can’t stand the thought of having to stay – It sucks because I’m only 48 & I’m already seeing myself alone for the rest of my life – But it IS what it IS I suppose.

Jason: I’ve just started getting worse and using a cane 100% of the time now, my fiancé of 5yrs now decides this isn’t for her, she wants a man that can run with her…. It’s not easy trying to stay positive and keep fighting this Monster.

Dave: Mine kicked me out. “What good are you for me anymore?”

Sammi: When I was first diagnosed I thought my fiancé of 9 years would be with me still now but sadly 2 days later he ended our relationship which hit me really hard. But I then met someone else 6 years later who I had told from the start of our relationship and when I started worsening after 3 years together it happened all over again…we split just before our 4th year together and the utter feeling of sadness and stressing coz of it I ended up being in a wheelchair myself and now live alone!! With just my mum who’s my primary career and lives just round the corner, but I say it to her often that this is all round the wrong way it should be me looking after her not her looking after me!! But if I was with someone who was in a wheelchair I’d stay with them coz I’d see past the chair and see the person…. Sad it wasn’t that way for me and have lost faith that I would ever find that someone special who WOULD see past my chair.

 

 

Caring through love not duty

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High above New York City on the viewing gallery of the Empire State Building.

To misquote a well-known Shakespearean saying about greatness: some people are born carers, some people learn to be carers while others have the role of a carer thrust upon them.

In the case of my carer, the last one is most definitely true. Not that my carer thinks that what she does is any more than any loving wife would do but Lisa has to cope with quite a lot – which she does exceedingly well, without complaint, and usually with a smile. And this is despite her having diabetes and a touch of arthritis.

She says she does it out of love not out of duty.

Actually, we both had to laugh when we looked at the requirements for her to claim the UK’s Carer’s Allowance benefit. It says she has to provide at least 35 hours of care a week. Oh, if only it was so little. She provides me with many more hours of care than that. In fact, she rarely goes out leaving me at home alone; and it is almost unheard of for me to be allowed out by myself. And I do mean ‘allowed’ as while, in most cases I have the final say, where my health is concerned Lisa is in charge.

Care covers a whole multitude of things that most able-bodied people take for granted, such as preparing my food, cutting up meat so that I can eat it easily because I cannot hold a knife and fork at the same time, helping me to shower and dress, getting my wheelchair in and out of the car, wheeling me about, and physically supporting me if I try to walk a few yards using my walking stick.

And that does not include extra washing of clothes and/or bedding if I have an accident involving problems with my waterworks. Then there is responsibility for my medication, ensuring we have enough of each one, preparing correct doses and making sure I take the correct tablets at the proper times.

At home, although our new home in Spain is suitable for wheelchair use, I do not yet need to use one indoors. Instead, I get around by supporting myself on furniture and the occasional grab rail. Sometimes I fall and Lisa has learned not to rush to help. If she is in another room, she just calls out to ask me if I am all right. A negative answer or no answer at all would bring her to my side in seconds.

One thing that is remarkable about Lisa is that she married me knowing that I have MS when her only previous experience of the illness was her grandfather and he, it seems, chose to be a sufferer not a fighter.

As my wife and carer, Lisa has to cope with so much, day and night, seven days a week. She has to contend with my occasional outbursts of frustration, my impatience when something won’t go right first time and, sometimes, my determination to do something that I am no longer physically able to achieve – that usually ends in a fall. I often joke that the floor and I are on very good terms as we spend so much time together.

In the ‘CAN do’ attitude to life page on this website, Lisa says I am her hero because “He truly amazes me every day. I don’t think I know a more positive person.” However, in truth, she is really my hero, or heroine if that word is still used today, for all she does both seen and unseen by others.

Lisa is my love, my lady, my life, my very best friend and my carer. She knows that I have a positive outlook on life but she is my strength when I am weak, my support when I am in danger of falling, and, above all, the most wonderful person in my whole life.