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50shadesofsun

News and Opinions about MS, Health & Disability

Good and bad days on the MS merry-go-round of life

bad days

Pride becomes before a fall, or so the saying goes, and that certainly seems true for me.  I had been getting around a lot more easily, feeling pleased, using my new rollator but then …

Ok, all of us who live with multiple sclerosis have good and bad days. Good days when we find it fairly easy to get around or do things; bad days when the opposite is true.

Two days ago, all was well. I was out and about and used my rollator to help me walk into our local pharmacy to collect my medications. Feeling comfortable and at ease, I felt strong and confident.

Then I drove home where, again using my rollator, walked up the ramp to the front door and went indoors.

Yesterday, regretfully, was not the same story. Not by a long shot!

I went out the front door, started down the ramp and my legs soon felt shaky and my arms so weak that I was unable to support myself on the rollator. It was no surprise when I sank to the ground. After a few minutes, by sitting on the side of the ramp, I managed to regain my feet and made my way to the back of our car, where Lisa had my wheelchair ready.

Bad days are not so easy

All that was left to do was to walk across some gravel and transfer from the rollator to my wheelchair. Easy right? Well, yes, on a good day. Even on a moderate day. But yesterday was neither of those, it was a very bad day; bad to ******* awful.

And that’s why my easy transfer ended up causing me to fall again, this time in the quiet road outside our home. The sky was blue, the sun blazing down. It was midday, and very hot. Remember, we live in the south of Spain and today it got to 37°C, which is almost 99°F, and that’s the shade temperature. I was in direct sunlight, the humidity was high. It was hot. It’s been like that for weeks.

I made several unsuccessful attempts to get up but, eventually, Lisa phoned for help. In next to no time Eddie and Bob arrived and got me off the road surface and safely back in my wheelchair.

Difficulty resolved. Today is another day, I wonder what that will bring. Let’s hope it is a good one.

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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.

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Mobility aids need to be embraced, not feared

We often say that we are people with disabilities, not disabled people. That is, we are people first. I agree with that view, and have said so before.

The overall point is that we are all individuals, we are not our diseases. But some run the risk of taking that too far as they refuse to use aids that would make their lives easier.

Take mobility problems as an example. It is not unknown for some people to show reluctance to even using a walking stick or cane.

That same reluctance seems to exhibit itself at every stage that mobility deteriorates. Each new piece of equipment designed to overcome a difficulty in walking. They include the use of two canes, a walker, a rollator, a wheelchair and, ultimately, a powered wheelchair or a scooter.

mobility

In one of my wheelchairs on a Mediterranean beach, close to my home.

I make no secret of the fact that I have mobility issues, caused by multiple sclerosis. At home, I manage to move around using furniture and walls for support. But, even doing that, I can still fall. Outdoors, I can´t walk a step without support of one type or another. Even with support, I can walk about 15 yards before looking for a place to sit down.

That was the reason I decided to buy a rollator, a form of walker on wheels with brakes like a bicycle and parking brakes too. Add to that a built-in seat and, when I need one, I have my own chair.

Mobility aids are tools to help

I looked at using a rollator as a positive step. Instead, it allows me to walk more safely and take a break whenever needed without any risk of falling.

To travel any greater distances, I use a wheelchair but this is a tool not a way of life.

For me, a wheelchair is not a last resort, not something to dread. Instead, I look at it as a valuable tool that gets me to go places I couldn’t otherwise reach. So, instead of being disabled, I consider myself wheelchair-enabled.

What’s more, when using my electric wheelchair (I have an older, manual one as well) I am also independent as I can go places by myself.

To anyone who has a mobility difficulty, my message is simple. Don’t be afraid to try the next aid. You might be surprised by how much it helps 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 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.

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Humour? We are falling over ourselves laughing

humour

When you live with a disability, whether through multiple sclerosis or another cause, humour can help. It may be a twisted form, but it’s still humour.

I find that, these days, laughter comes when it is least expected.

It can come after I end up on the floor at home, especially if that is because I misjudged the distance to a chair or a hand grip. Instead of sitting there and pounding the floor with my fist, while crying “Why me?”, usually I see the funny side and just laugh at my own predicament.

That’s not to say that I never ‘lose it’ and curse this damned disease but, normally, the laughter takes over. In fact, as if getting up from the floor isn’t difficult enough, often I have to wait until I can stop laughing. Then, and only then, can I begin to pull myself up again.

Out and about, I use a rollator to walk just a few yards, such as from our home to the car outside. For any longer journey, I rely on a motorized wheelchair.

That, in itself, can be another source of humour. My very first motorized mobility aid was a second-hand scooter that I bought on eBay. It opened up a whole new world but the inaugural trip wasn’t uneventful. In our local park, I messed up and almost ended up in the paddling pool. Fortunately, disaster was averted and Lisa and I ended up laughing at my near miss.

Bare butt humour

A couple of years ago, we were visiting Lisa eldest sister who lives in New York state, about a half hour train ride from the city. We enjoyed a meal with sister Gen, her husband, three children and two of her grandchildren.

After her offspring and grandchildren had left, I managed to fall in the downstairs ‘half bathroom’ which is a room with a washbasin and toilet. The problem on this occasion was a loose mat that proved too much for me and my limited mobility to handle.

I was in a confined space and managed to get to my knees but not any further. I needed help and had to wait for Gen’s son to return for him to render assistance. My trousers and underpants were both around my thighs and, being on my knees with my arms on the toilet, everyone got a great view of my butt. Much mirth and laughter from everyone, especially after Gen’s husband Billy said he’d fallen in love with it. Enough said!

Actually, earlier on that same trip, Lisa and I were in Honolulu and used a vehicle converted to carry a wheelchair. I was loaded on in my chair, secured and off we went. What I hadn’t realized was that he driver ad secured the rear of the chair but not the front.  The first I knew about that was when the driver pulled away from some traffic lights like Sebastian Vettel stating a motor racing grand prix.

No longer sitting upright

The start threw me and my chair backwards. This was unnoticed by either the driver or my beloved wife, sitting in the front.  Grabbed their attention by saying “You might like to know that I am no longer sitting upright.” Lisa looked back and saw my feet in midair. She asked if I was hurt and when assured that I was ok, she just burst out laughing, me too.

Not the driver, though. He was so apologetic, and stopped to pick me up and this time secured the chair at the front as well. The poor man was so sorry and worried that he’d lo-se his job but we were too busy laughing. We did not complain.

The lesson I have learned is that you can’t take yourself too seriously.

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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.

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