Late night police visit to pick me up

Police on your doorstep late at night is never a good sign. If their business cannot wait until the morning, it must be serious, right?

And, so, it happened. Just before midnight, a car pulled up and two uniformed officers came straight to our house.

No, we had done nothing wrong – they didn’t want to question us… or worse! There had been no accidents involving family or friends – they were not bringing us sad news. So, why were they here?

Well, as silly as it sounds, they had come to pick me up ……. off the floor.

You see, I had slipped while transferring from the sofa to my wheelchair, and ended up on the floor.

Despite continued and varied attempts on my part, I was unable to get up – so called 112. This is the emergency number here in Spain, equivalent to 911 in the US and 999 in the UK.

The operator was attentive, reassuring, and efficient. He listened the facts, understood I have esclerosis multiple (multiple sclerosis), and, after ascertaining that I wasn’t injured and did not need medical assistance, said help was on the way.

And, just 15 minutes later, two Local Police officers arrived to pick me up. This they did quickly and effortlessly and were both courteous and friendly.

Taking of police in Spain, perhaps I should point out that we have three forces – the Guardia Civil, the Policia Nacional and the Policia Local.

The Guardia Civil (Civil Guard) is Spain’s conventional police force which is organised along paramilitary lines and controlled by the Ministry of the Interior. The Guardia hs wide ranging responsibilities for national law enforcement and have the resources, powers and facilities of a normal police force. The Guardia Civil polices rural areas and smaller towns as well as the country’s highways.

The Policia Nacional (National Police) is the urban police agency of Spain. They are under the sole authority of Spain’s Ministry of Interior. Like the Guardia Civil it is a conventional police force, that polices cities and larger towns. It is also responsible for border security and issues residencia certificates for anyone wanting to become a resident in Spain and the essential national-registry identification number (NIE). It also undertakes the security of the Spanish royal family and the government. 

Policia Local (Local Police) is the force that is controlled by the relevant regional or local authority. It does not investigate crime but deals with minor matters. These include parking, local traffic control, bylaw issues, and, of course, picking me up off the floor. 

50shadesofsun.com is back

Hi

This is just a brief note to say that 50shadesofsun.com is up and running again.

I know there has been a lack of posts for a few months, but the site is back in business.

Regular readers will know that I live with multiple sclerosis, an unpleasant, unwanted, degenerative disease. It is oppressive and daunting but I am still the same person, positive and mainly cheerful athough there are times of frustration. But everyone gets frustrated sometimes, right?

The good news is that MS had nothing to do with this site’s short break, read more here.

The site has a new look, is easier to read, and has changed its host to WordPress, so costs have been reduced – which is essential. After all, 50shadesofsun.com is not designed to be a money-earner.

It is an independent site which is totally free of any commercial influences. And it will continue to be just that. I promise.

Freedom of the press, of which digital media is a part, is very dear to me. As such, I will continue to voice my opinions, whether to praise or criticise, to encourage or warn, Whatever they are, my opinions will be honestly held and be fair comment.

Watch this space!

Some thoughts on making your home wheelchair-friendly

Wheelchairs remain a fear in the minds of many of us who have grown up hearing the phrase “confined to a wheelchair”. While that is not part of our current language about disabilities, a fear still remains about needing to use one.

In truth, however, a wheelchair is a tool that can make our lives easier.

Whether you can propel yourself around in a manual or a motorised chair, one of the most important things to get right is finding the right home – or making changes to your current one. And these changes, or adaptations, must not only make it wheelchair-accessible. They need also to make it easier for us to move about and do things, to live.

Steps and doorsteps are hazards that need to be overcome. Ramps can be built to overcome outdoor steps up to a door.

Talking of doors, it is imperative that all doors inside the accommodation, not just the external ones, are wide enough to navigate and get through comfortably.

Living in a one-floor accommodation is best but if you do have a staircase, not to worry. There are chairlifts that can transport you up and down – you will just need a second wheelchair upstairs.

Decide on the ideal bathroom for your needs

The bathroom is a key area to get right. Here you can choose a walk-in roll-in shower with a suitable seat and handgrips. If you prefer to take a bath, you could use a hoist to get you in and out or, alternatively, a walk-in bath is a possibility. Whichever you choose, don’t forget to include a non-slip floor.

There are a range of toilets that you can choose from. These include those that can wash and dry your nether regions to simple elements that can increase te seat height. Once again, hand grips are important. One more item worth thinking about is a roll-under was basin to make it easier to use.

To make the kitchen more usable, lower or adjustable units are available.

wheelchair

Carpets can make it difficult to move and manoeuvre a wheelchair.

One crucial feature is the floor. I have already mentioned the necessity for a non-slip floor in the bathroom, but you need solid floors everywhere. Carpets, especially deep pile ones, are not wheelchair-friendly. Solid floors make for easier movement and make the wheelchair simpler to control.

There are lots of other bits and pieces that can be changed, such as light switches at lower levels. Mine are all pull switches, but you must make your own choice.

Just remember, as much as we try to avoid having to use a wheelchair, sometimes it is unavoidable. In that case, just keep in mind it is not a prison. a tool, a mobility aid that will make you wheelchair-enabled.

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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, so 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.

Heatwave and MS, is 34C (93F) too much to handle?


It seems that the media generally has become somewhat fixated on the heatwave being experienced in various countries worldwide.

As a native Brit, I am well used to everyday conversations including the topic of the weather. It’s a staple of chat, an icebreaker.

heatwaveAnd, in the UK I left behind, people will be complaining about the heat. “It’s too much,” will be an oft-heard comment. I am sure this is equally true of other countries where people are not used to high temperatures.

The latest news from the UK is that the heatwave is forecast to continue with a high of 34C (93F) expected.

But is 34C that hot? Is it unbearable? While I feel for those who have MS and experience heat sensitivity*, the truth is that places like the UK are just not prepared. They are not ready for winter snow, summer sun, or floods caused by heavy rain.

Be prepared for higher temperatures

Lisa and I moved to Andalucía in southern Spain almost three years ago. For us, 34C is not excessive but a common summertime temperature. Here, we are ready for it. And, in August, we fully expect many days when the thermometer will register highs in the 40sC (100sF).

heatwaveTo us, living in the countryside but just 15 minutes from the Mediterranean, these are just regular summer temperatures NOT a heatwave.

How do we cope? Spain is prepared. Our home has air conditioning. Additionally, we have ceiling fans in the living room, our bedroom and our spare bedroom. Our car has AC too. Although that is not unusual in the UK, as a luxury, here we use it for every trip in the hot weather.

It’s important we are all ready for the temperatures in which we live, so we can enjoy them.

Are summer highs in the 40s, that’s more than 100F, “too much”? Not for me. Even with MS, I enjoy day after day of sunshine. It’s so different from the cloudy skies and rain so typical of usual summer weather in the UK.

*Webmd says that heat or high humidity can make many people with multiple sclerosis experience a temporary worsening of their symptoms. Doctors believe that this occurs because heat causes nerves (whose myelin covering has been destroyed from MS) to conduct electrical signals even less efficiently.

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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, so 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.

MS guide to ins and outs of bathrooms


My thoughts are in the pan today, prompted by an excellent article by Ellie B in Modern Day MS. In it, she addresses bathroom issues that many of us with MS encounter such as, but not restricted to, bladder problems.

Ellie writes:

bathroomMany of us know that MS comes with a whole slew of bathroom issues. Bladder dysfunction, which occurs in at least 80 percent of people with MS, happens when MS lesions block or delay transmission of nerve signals in areas of the central nervous system. The central nervous system is responsible for the bladder and urinary sphincters.

She continues:

An overactive bladder that is unable to hold the normal amount of urine, or a bladder that does not empty properly can cause symptoms that include unfun things.

Such unpleasantness includes:

  • A frequent and urgent need to go, right then and there. Yeah, been there, done that. In fact, still do that.
  • A slow start after all of that urgency. It is extremely frustrating when that happens.
  • Frequent peeing during the night. I could set my clock, I wake every two hours and, due to mobility issues, use a urine bottle I keep by the bed.
  • The inability to fully empty that bladder. If only I could, it’s aggravating to have to go again so soon.
  • Accidents – not making it to the bathroom in time. Oh, I know, it’s happened to me in the past. Fortunately, medication,  better planning, a urine bottle in the car, and pads, have stopped it happening again.

Not just bladders but bowels too

Ellie says that bowel dysfunction is also an issue. It is, and can take the form of:

  • Constipation. Tell me about it. I need to take doses of laxative three times a week.
  • Diarrhea. This is one problem that I don’t have.
  • Loss of control of the bowels. Not really my problem but urgency can be an issue at times.

Ellie continues:

None of it is pretty, pleasant or fun for us or the people close to us to deal with. It makes those of us with MS master location scouts. We will have the nearest bathroom and exits in eyesight within moments of our arrival. If we’re lucky, our people are master scouts as well.

There are a few things non MSers need to know about using the bathroom:

  • Yes, we know we just went. We really do need to go again.
  • No, we don’t think drinking less water would help. Actually, it’d make the whole situation worse. Then we’d be sick for different reasons.
  • Don’t joke and tell us to wear a diaper. It’s not funny. We probably already know that. We might already be in one.
  • Don’t look at us funny for using the accessible stall. With MS, we often have a wide gait and other mobility issues. We need the extra space, the higher toilets and the handrails. Yes, we know we often don’t look like we really need them. Don’t fuss at us.

Well said Ellie.

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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, so 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.

MS: Don’t fear wheelchairs – users are not broken

Soon after I was given a diagnosis of multiple sclerosis, I was told that only 25% of people with the disease end up in wheelchairs.

Whether the figure is right or wrong is not what concerned me. The use of words ‘only’ and ‘end up’ had such negative connotations for me, and still do to this day. People in general tend to regard those of us in wheelchairs as in need of pity and sympathy. Meanwhile, many with progressive illnesses seem to look at the prospect of using a wheelchair with fear and feelings of dread.

I have found that such feelings are unnecessary.  A wheelchair is a tool for our benefit, not some curse to be abhorred. The equation is simple: whatever mobility aid we need, we should not be afraid to use it – from walking cane to wheelchair.

Bearing this in mind, I was delighted to read an article written by wheelchair-user Jennifer Digmann, published by multiplesclerosis.net.

not broken

Dan and Jennifer Digmann.

Headlined I’m Not Broken Because I Use a Wheelchair, Jennifer says that, as a person with MS who has to use a wheelchair, she is instantly regarded as someone who is damaged and must be fixed. Someone to feel sorry for, or who could improve her health if she only tried a little harder.

This is because they assume she can’t be happy, fulfilled and productive if she has to live her life in a wheelchair.

I miss it but am not broken

Jennifer writes:

It’s as though being able to walk is a prerequisite for having a good life. Yes, I would love to walk. Yes, I miss the days when I could stroll through the parks. Climb a flight of stairs. Stand all by myself to get into bed or go to the bathroom.

But my aggressive disease quickly progressed, and I haven’t been able to walk in nearly 16 years. This is who I am as a person. I’m not broken.

And for as much as those of us in the MS community are eager for others to understand what we’re going through, (my husband) Dan and I are hoping for the same from people living with our disease.

We often hear people with MS say to us things like “I’m afraid I’m going to end up in a wheelchair” – and I’m sitting right there.

Maybe they’re doing what I want them to do: See me and not my wheelchair. Or, maybe their fears supersede their sensitivity to present company.

Either way, I get it. I felt the same way when I was diagnosed more than 20 years ago.

But now that this is my reality, I feel I need to verbally stand up for myself and others who need to use a wheelchair.

Make the most of life

I, like so many others, am making the most of my life as it is.

And don’t get me wrong. I’m not complacent, and I haven’t given up hope that someday researchers will find a cure for this disease.

Would things be easier if I didn’t have to use a wheelchair? Sure, but I’m not putting my life on hold because I need to use one.

You see what I did there? I USE a wheelchair, I’m not CONFINED to it.

My wheelchair is the key to my independence. It helps me experience life. I can do things like go to the grocery store. Gather with friends for dinner at an accessible restaurant. Meet a cute man and get married. Travel throughout the United States. Attend classes as a non-traditional graduate student and earn my master’s degree (BTW: I was non-traditional because of my age and not my disability).

I hope that I’m helping to show that life doesn’t necessarily end if your disease progresses and you need to use one. In some ways, both literally and figuratively, my life didn’t really start rolling until after I started using a wheelchair.

To me, Jennifer is a great advocate for those of us who are wheelchair-users. She, like me, is not broken but is ‘wheelchair enabled’. We have both grasped the independence granted by our wheels.

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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.

* * * * *

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.

* * * * *

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, so 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.

Creating a small business – How to balance work, parenting and disability

This post is by guest columnist Patrick Young, an educator and activist.
He believes people with disabilities must live within a unique set of circumstances – the outside world often either underestimates them or ignores their needs altogether.
Patrick created AbleUSA to offer helpful resources to people with disabilities and to provide advice on navigating various aspects of life as a person with disabilities. I believe many of the points he makes are also relevant in many countries besides the US.

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Despite having a disability, you keep beating the odds again and again. You’ve created financial stability for yourself and your family. Now you’re ready to broaden horizons and add an additional stream of income. Like everyone else, you’ve heard talk about how the gig-based economy is revolutionising the way people do business and live their lives and you’re ready to get in.

When starting your own small business, the sky is truly the limit. There is a wide array of possible small jobs you can take up on your own, anywhere from commercializing your hobbies online to selling real estate in your local neighborhood.

Whatever you choose to do, you need to know the ins and outs of starting your own business, and the best ways to balance a small business with your other priorities in life. Here are a few tips to help you along the way.

Know what resources you have at your disposal

It would be foolish to overlook the many different public and private resources you have at your disposal. Living with disabilities isn’t easy, but there are a number of ways you can qualify for grants and other forms of funding to help get your small business up and running.

Look into what you have available and see which opportunities are the best for your individual needs. When it comes to starting a business, it’s good to have additional capital at your disposal.

Aside from funding, you should also look for any kind of pre-existing platform to help get your small business up and running. For instance, if you are looking to sell something, it might be easier to go through an online site that caters to your particular market.

How to get started in the gig economy

When just getting started, it’s important to keep your expectations modest. It’s impractical to think that you’ll create a Fortune 500 company overnight. Instead, set small attainable goals for yourself, and create just enough work for yourself so that you can get a taste for the life of a small business owner without immediately overburdening yourself.

You still have a family to watch over, and trying something for the first time is bound to throw a few curveballs your way, so limit your output and see where the business goes from there.

The key to working in a busy household

When balancing work with family, it’s easy for lines to get blurred.

When you decide to start your small business from home, you probably do so for the sake of convenience. However, sometimes, things can quickly digress into confusion.

The key to managing a small business from home is keeping your business separate, neat and diligently organised. Find an area of your home that is spacious, easily accessible and quiet. Then, convert it into your own personalizsd workspace to maximize organisation and efficiency.

These are just a few tips to get your small business up and running. Just remember that when trying something for the first time, it can take a while to get the hang of things. No matter what challenges you face along the way, you are a strong independent and capable individual who can overcome anything.

Picture: Pixabay.

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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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fracking50shadesofsun.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.

* * * * *

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.