Disability is not the end, just a different way to spend time in your new life

time

People who don’t work have to find different ways to fill their time. But those who are unable to work because they have disabilities, like me, need to find things within their capabilities. Not so easy.

For many, previously enjoyed pastimes are out. Of course, I cannot speak for everyone but some of the ways I used to spend my ‘spare’ time are no longer feasible.

Before this disease developed, my activities included:

    Adult leader of a scout troop

   Leader of mountain walking groups

   Rock climber and abseiler

   Advanced first aider, with St John Ambulance

Since multiple sclerosis took its toll, such active roles no longer feature in my life. These days, excursions into the outdoor world are either in our car, fortunately I can still drive, or my electric-powered wheelchair.

But what to do with those long hours at home? Well, the first thing to say here is that I am determined to carry on as best I can. There is very little “woe is me” about my life. MS and the physical disabilities that accompany it are just irritants, no more than obstacles to overcome.

As I have said before (see CAN do attitude to life), the activities I listed above are firmly in the past, now no more than fond memories. But, I’m so glad I did them when I could.

Filling that new life

So, what do I get up to these days?

Regular readers will know that, nearly 2½ years ago, Lisa and I set up home in southern Spain. We left behind rainy north Wales, in the UK, to embrace the sunny climes of Andalucía. Writing this, in mid-April, the sun is shining, our back door is open, and I am wearing a sleeveless top and shorts.

Writing has been my life (see In the written wor(l)d) and continues to play a big part. Now that I have retired from full-time journalism, this blog provides a place to publish my writings for the world to see. What’s more, I enjoy researching and putting together the articles that I write from my living room armchair or out on the terrace which is enclosed by insect screens.

Something else I enjoy is playing games on my computer. Here I am not talking about solitaire or sudoku, though I like those too. Here, I am referring to my favourite massively multiplayer online role-playing game (known as a MMORPG) called Anarchy Online. This is very involving and makes short work of any surfeit of time that may be on your hands.

Oh, and in case the idea of computers puts you off. I can only use one hand as MS has robbed me of use of my left.

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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 for your general knowledge only. It 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. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Changing “I can’t” to “I can” – determination is key

Determination is one of the best qualities to which we all can aspire. Whatever our disease, condition, or disability, we can all try to have more determination in our lives.

It is that quality that changes “I can’t” to “I can”. It is about making every effort in life.

Of course, I am not talking about anything that is beyond our individual capabilities.

We might not be able to walk far, if at all, but is there anything we can do to make life easier not only for ourselves but also those nearest and dearest to us.

If we can find ways to get up after a fall, without needing help, we have made a good start. But finding ways to stop falling is even better.

In my own case, my mobility has been increasingly affected over the years. In gradual stages, progressive multiple sclerosis has taken its toll.

determination

Menai Suspension Bridge, from which I abseiled in 1997.

Thirty years ago, as an adult leader in the Scouts, I was an accredited mountain walking leader, went rock climbing and enjoyed abseiling. On one occasion, for a medical charity, I abseiled from the Menai Suspension Bridge in North Wales, UK.

Twenty years ago, my difficulties in mobility had begun. Walking was a task that no longer came naturally. I was forced to think about each and every step.

Fifteen years ago, my inability to left my left leg led to a diagnosis of MS.

Ten years ago, after several falls, I started using a walking stick/cane outdoors. This minimized falls but could not prevent them. A year earlier, I had found it impossible to continue working and so tried to find ways to help move about.

Determination to be independent

First, I tried mobility scooters but these were not deal for me. You see, scooters are designed to be driven using both your hands which did not suit my left arm and hand which are so weak that I cannot even use them to eat.

While continuing to use a walking stick for short distances, up to 10 yards or so, longer distances required a wheelchair. This was the only way to avoid falls

Initially, I tried a self-propelled manual chair but soon found that I needed to have someone push me. My weak left arm/hand meant I could make great left-handed circles but going straight just wasn’t possible.

This was followed by my first electric power wheelchair. Now, this gave independence when using it, with one-handed joystick control. However, I still needed help getting it in and out of my Chrysler Voyager. My beloved Lisa still had to manhandle a folding ramp, so it wasn’t ideal. In fact, she said that she’d rather push the manual chair than fight with the ramp.

So, how could I regain some independence and not cause more work for my nearest and dearest?

new normal

The lightweight folding electric wheelchair that I use today.

The answer was surprisingly easy. I bought one of the lightweight folding electric power wheelchairs now on the market. This I can easily get into and out of the car using just one hand giving me independence to reach anywhere that has no more than a small kerb or step to overcome.

It means that now Lisa can choose to stay in our car, while I get out to run one errand or another.

For me, determination has paid off, and continues to do so. How about you?

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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 for your general knowledge only. It 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. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

‘Funny walk´ is disgusting reason to throw disabled customer out of store

Do you “walk funny”? I sure know that I do, whenever I try. Drop foot causes my left foot to drag and the whole effort is a struggle.

Mobility problems like this are a way of life of people with disabilities, however caused. My difficulties stem from multiple sclerosis but many of you may have Parkinson’s or a yet different disease.

Our walking issues tend to only be seen when we try to carry on as normal, and can be misunderstood. I have been mistaken for being drunk but, each time, a quick explanation that I have MS was enough.

Apparently, however, a similar explanation was not enough in one Halfords store. There, although he told the manager that he had Parkinson’s, she told him to leave. That is disgusting – and a terrible indictment of Halfords’ staff training on disability awareness.

This is how BBC News reported the story online:

Parkinson’s sufferer ejected from Halfords ‘for funny walk’

A man with Parkinson’s disease was told to leave a Halfords store for acting suspiciously by “walking funny”.

Chris Cartlidge, 51, was ejected from the shop in Trent Vale, Stoke-on-Trent, after his symptoms caused his leg to stiffen and drag on the floor.

He said when he told a shop assistant he had Parkinson’s, she replied: “I don’t care what you’ve got, I want you to leave the store.”

Halfords said it had “sincerely apologised” to him and his family.

Mr Cartlidge, who was diagnosed with Parkinson’s 10 years ago, said he had approached the shop assistant for help in finding some car parts in January.

Devastated and mortified

“I try to be as normal as possible but it’s really demeaning when people say things like that to me,” he said.

awareness

Katrina Cartlidge.

His daughter Katrina Cartlidge said she was “devastated and mortified” by the way her father was treated at the store on Springfields Retail Park.

“It’s hard to see him suffering like this,” she said, adding that he tried to “make the most of life” and remain as active as possible.

“I would never expect someone to treat my dad that way or anyone to be judged by that – by disability.”

A spokesperson for Halfords said its team “fell short of meeting our standards”.

“We are all very sorry for Mr Cartlidge’s experience and sincerely apologised to him and his family at the time for any embarrassment this misunderstanding caused.”

Whoa, ‘misunderstanding’? There was no misunderstanding. It was a complete lack of understanding of a person with a disability. Amazingly, even after she was told he had Parkinson’s disease, the store manager didn’t care and ordered him to leave. So, no misunderstanding – more a complete lack of judgment, lack of disability awareness, and lack of customer relations.

Benali Hamdache, campaign manager at Parkinson’s UK, said the charity is “calling for a little bit more awareness and a little bit more understanding”.

“We hope that Halfords can actually start by leading with an example and embrace our call to take on some training,” he added.

I fully support these views, Parkinson’s UK is really speaking for everyone with disabilities, but I must go further. Halfords needs to rigorously push disability awareness, ensure all staff have appropriate training, and monitor everyone’s adherence to it.

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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. It 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 medical care for any health issues and consult a doctor before starting a diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

Is your MS flare-up real or is it a pseudo-relapse?

Have you had a multiple sclerosis relapse recently? Actually, would you know if you had? In fact, would you be aware whether you are had a relapse or a pseudo-relapse?

Pseudo? What’s that? Read on.

A true relapse – or flare-up, exacerbation, even attack – is a time of new or worsening of MS symptoms.

For your episode to be recognized as a true MS relapse, four conditions have to be met. These are:

•       pseudo-relapse Existing symptoms of MS must have become worse or new symptoms appeared.

•        Symptoms must last at least 24 hours.

•        Symptoms must occur at least 30 days after the last relapse.

•        There must be no other explanation for the symptoms.

However, even knowing this list, identifying what you have can be difficult. And it matters not whether you have had MS for years or are newly diagnosed. Telling the difference between a true or pseudo-relapse is more than a little tricky.

Telling the difference

On the upside, pseudo-relapse symptoms tend not to last long. Indeed, they may resolve within a day. Additionally, if your symptoms are caused by something else that can be treated, such treatment will resolve the problem.

Most importantly, pseudo-relapses are not caused by new damage to the central nervous system. A pseudo-relapse is NOT associated with an active MS lesion on MRI.

So, what are likely to cause pseudo-relapses? Well, they may be caused by heat sensitivity or infections including the common cold.

Once you get over these infections, your MS symptoms should get better.

Medications, both for MS and for other conditions, can also cause new symptoms. Be sure to discuss any medications you are taking with your healthcare provider.

True or pseudo-relapse?

Here are some clues to help you decide if your episode is true or not.

Timing: If your worsened symptoms resolve fairly quickly, it is likely that you may have a pseudo-relapse.

Old symptoms: Reappearance of old symptoms is more common in a pseudo-relapse. Generally, you will not experience another true relapse in exactly the same way as a previous one.

Types of symptoms: Some worsened symptoms are more likely to be a pseudo-relapse than a true relapse. These include sudden worsening of spasticity and pain, which are certainly seen in MS, but are rarely due to an acute relapse.

As someone with secondary progressive MS, and who has inactive lesions, I don’t get true relapses. Pseudo-relapses are, though, a way of life – especially if I have an infection.

I have been sneezing a lot in the past few days and am starting to get that ´blocked up´ feeling – sure signs that a cold is on the way.  Oh joy, my MS symptoms are set to get worse temporarily – my very own pseudo-relapse.

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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.

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

Loved ones

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.

Just how are you coping with your health?

“Hi, how are you?” is, perhaps, today’s less formal equivalent of the traditional and polite greeting “How do you do?”

Of course, the greeting is only a rhetorical question and usually we say some form of “I’m fine, thanks.” Sometimes, we say it even when we could feel better.

When you have a serous illness, such as multiple sclerosis, you are sometimes asked a real question about your health, how the disease is affecting you, and so on. And that got me thinking, how am I getting on, how am I coping with MS? And, how are you doing?

how are youMS is certainly not new to me as my first symptoms appeared more than 40 years ago, although it was not definitely diagnosed until 2002. But, just how am I doing?

Regular readers will undoubtedly recall that I visited the HSCT facility in Moscow in October 2016, where it was discovered that I had a vitamin D deficiency. As a result of that, I began to take a daily supplement.

Then, at the end of October last year, I was seen by a neurologist here in Spain – having not seen one during my last 10 years living in the UK. Tests here showed by vitamin D deficiency had improved slightly but its level was still far too low. Additionally, they indicated a similar lack of vitamin B.

So, me medications have now been adjusted to increase significantly the amount of vitamin D supplement and to introduce a regular dose of vitamin B.

How are you? Better, worse, or the same

Have they had an impact? Well, it may be too early to tell. Any perceived gain could only be wishful thinking, but let me tell you what’s been happening.

I don’t usually use my wheelchair at home but Lisa has been unwell, so I have had to do more around the house. To enable me to do this, and to avoid the risk of falling, my neat folding motorized wheelchair has been pressed into use indoors.

On Friday, I drove into our nearest town to visit our bank and the supermarket. When I returned to my car, my wheelchair suffered a mechanical malfunction that turned out to be extremely minor and was fixed by a neighbour in less than five minutes when I got home.

Having left my chair with my neighbor, I had to get from my car into the house by myself. To most people, this would not cause a problem but to me, it was equivalent to a major trek.

I walked carefully up a ramp while holding onto a handrail, entered the house and made it to my armchair without any incident. I was not out of breath, and felt good.

It was a minor achievement that made me feel good, but was it the result of vitamin supplements or just one of my good days? Obviously, I cannot tell yet. But any improvement, no matter how small, must be seen as a sign of encouragement.

What about you, how are you getting on?

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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.

Be positive about living life your way

life

If you are living with a disability, or a chronic illness like multiple sclerosis, how do you choose to approach life?

Some people will say “You must” or “You must not” do this, that, or the other. But, in my opinion, they are wrong. I will only urge you to do certain things, no more. No, ‘you must’ or ‘you should’. Not from me.

We are all individuals and need to form our own opinions and make our own decisions. The human race is not an actual race, not a contest. We are each unique and do not benefit from comparison to other people.

Therefore, what follows is not a list of rules to follow. They are just things that I do, that I would urge you to consider. 

Focus on what you can do – and do it. I put what I can no longer do where it belongs. By that, I mean as a happy memory from my past.

Keep calm. By that I mean, when faced with a problem or difficulty, I think about how to overcome it. It’s important not to panic, I take my time and think my way through it.

Don’t worry too much about the future. Sure, if there is anything that can be done to make life better, then by all means I’ll do it. However, in the words of an old song, “Whatever will be, will be, The future’s not ours to see”, so there is little point worrying about it. Perhaps it would be better to consider what we do with our lives now, rather than what might, or might not, happen in years to come.

Grasp opportunities in life

Live life to the full. I grasp every opportunity that presents itself. In the past six years, I have divorced and remarried; gone to the most northern point of mainland Europe; visited Hawaii, New York, and Moscow; crossed the Atlantic by cruise ship; and moved to live in Spain. There’s an adage in the business world that is perfect for us. And that is not to see problems as insurmountable obstacles but as opportunities to be taken. In other words, turn a negative into a positive.

Live your life as you want to live. While I urge you to live positively, ultimately how you live your life is your own decision.

Accept the love of those nearest and dearest to you, and make sure you show your love for them in return. Think about it for a moment, where would we be without their support?

No man is an island, so the saying goes, and that is true. Whether or not you have a disability, isolation is not an easy choice. While I prize my independence, as I am sure you do, sometimes I do need help. You will too. At such times, we don’t need to be too independent or proud to accept assistance – or even ask for it.

Value yourself. Please don’t fall into the trap of believing that your disability makes you worthless. You do have value as an individual with your own opinions, as a member of your community

Live your life, speak your truth. While speaking out will come easer to some than others, it is important that we speak for ourselves. We need to be our own advocates; no one else can do it as well as ourselves.

Happy New Year.

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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.