What’s it like?

The seventies singer-songwriter, Clifford T Ward had moderate success in the charts; mostly with Gaye. He had a daughter with cerebral palsy. In this song, he asks a question.

  https://www.youtube.com/watch?v=6TUQpItDHAY 

Unfortunately, the singer himself fell under the brutal wheels of the MS bus. He is no longer with us.

I can see people thinking the same question at me. I’ve written long and hard about the effects of my condition. My wheelchair adventures are well documented.

But, what is it like?

Let’s start with frustrating:

I now operate from a lower level. I call it the bottom line. In a crowd, I am in amongst everybody else’s bottom. I’d rather look somebody in the eye rather than up at their eyes. I’d rather be able to reach the high shelves in the supermarket and not ask for help.

Independence, once taken for granted is becoming more difficult. It adds new burdens but I have the drive to continue. You won’t find me wailing. I may be honest about my frailties and fears but moan I will not!

One of my major frustrations lies in the attitudes of others. Even after comprehensive explanations, there may still be a look of disbelief. I can detect resentment at my benefits or the fact that I don’t work.

I have a man cave all bought and paid for and live in a peaceful environment. But I know the grind of daily work. The early winter mornings, long car journeys and stressed out environments have been my friends. The sense of the ceaseless treadmill has invaded my soul for years. So, why do people still come to me with faces of despair?

The work, the pressure and the lack of freedom? I’ve known it all but if you have noticed, I don’t have the capability to do it anymore. But I have done it. 

My time is spent looking after myself; a true full-time job. Whenever I start to explain my own personal tribulations, I’m referred to as self-centred; a bit “woe is me.” I’m not believed by some. These “some” have been an important part of my past life who should know me better. That’s frustrating.

Fortunately, I have lovely friends and relatives who do understand. Their questions are questions of concern.

Bumpy:

Yes, life in wheels is bumpy. Oh, listen to the motorist lament the pothole peppered roads brought on by years of neglect and temporary repair. Have they seen the pavements?

If you are in a wheelchair going up to Lime Street Station alongside the side of St George’s Hall you’ll understand.

oyris (2)
Yes, it looks lovely but each paving stone is on a different level.

The few bits of pavement in my home town are often impassible due to inconsiderate parking and the joke of dropped kerbs. The local green looks like a lavish spread of carpet-like lawn. It’s not. It’s like skiing down moguls. I’m glad I don’t have man-boobs.

Inconvenient:

For years, I skipped in and out of my parents’ home. I’m sure the step grew bigger. I’m sure all steps have grown bigger. They are such a barrier.

One side of my local high street is out of bounds. Steps all over the place. Mind you, I don’t think the nail salon or the glowing fluorescent colours of the elderly ladies nylon fashion shop are quite my scene. As for the travel agent and flower shop……

khv

This is where planning comes in. Every trip outside needs meticulous preparation. I’m fairly safe with supermarkets, train stations and big chain pubs. Smaller establishments need checking. It’s inconvenient.

I was so pleased to find an ethnic food shop in Bold Street, Liverpool. I was even more pleased when the smiling shop assistant turned up with a threshold ramp.

I have a leaflet already made up to post through the doors of the shops on the left. I use a ramp at home. It was seventy quid. Not much for the job it does.

Time-consuming:

Cooking in the kitchen. It’s slightly too narrow to turn in the wheelchair so I’m constantly reversing out to reverse in, depending on which side I need. I’m used to it but it takes forever.

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Going to bed, getting up, showering, dressing and sorting out the bedroom wreckage is a long process. Going outside, I need to get the door open, wedge it and place my threshold ramp in place. The ramp is big and cumbersome. It takes a nifty trick with feet before I can drop it into place, thus disturbing the whole block with its loud resonating aluminiumesque echo. Then it’s a question of do I leave the door open to expedite my man cave re-entry or spend another five minutes securing the premises? I’m lazy. I leave the radio on and the door open.

Have you ever tried putting a coat on whilst sitting down?

The rules are, you are allowed to bend forward but your arse is glued to the seat. More time. Putting shoes on, from a wheelchair too tall for you to reach the ground with hands and feet? I have more tricks for that.

The impossible:

Changing beds.

Vacuuming.

Dustpan and brush.

Clearing a mess on the kitchen floor.

(It goes all hard and crusty.)

Cleaning filters.

Anything requiring the strength of two hands.

The entertainment corner.

xfg

Moving furniture.

DIY (Hate it anyway.)

Anything low down in a corner.

Dropping things.

Advantages: (Yay)

I always have a seat when travelling.

The kindness of Tesco delivery people.

Almost everyone is helpful.

Getting to talk to Tanni Gray-Thompson in London twice.

The aforementioned friends and family. (Old and new.)

Being retired.

Not having to drive.

Independence.

Thank you for reading

Author: mcchrystalise

Because of MS, (it's a swine of a thing) I no longer work because I no longer work. I blog about the things I think about. I love music.

2 thoughts on “What’s it like?”

  1. morning, i have a manual wheelchair which i have been using out for a while now to go to shops. OMG really i have been caught up in clothing rails, the rows and rows of shopping isles are just useless as always there will be a pillar or a huge cage of cheap stuff stuck in the middle. Never mind my care worker would negotiate all these for me with expertise.

    I bought myself a folding electric wheelchair as i felt i would like the independence when out we have used it a few times its easier to fold down in the back of the car then my free wheeler.

    I am not sure when or why i should gravitate into it at home? where do you get too in the illness that necessitates a full time in a wheelchair? I try everyday to walk a bit. It hurts like hell its a massive struggle, i use my rollator but i told my doctor i have to try. I am scared if i dont use my legs i will loose my legs.

    I live in sheltered which was designed for disabled people RIGHT? Wrong, the flat is so small if you fart one end it would hit the wall the other end. I tried one day to use my wheelchair in the flat as my legs were really stiff and bad, i nearly killed the 2 cats, i bashed the hell out of the doors, and got royally stuck.

    going out of the front door was a like going on army manoeuvres.

    BASH, crash, then the front side door lips so you kind of crashed upwards, the drop kerbs are useless and i nearly tilted over. Jeez. You take your life in your own hands.

    I shant go out like that again, and i will be when i have lived here a year ask if i can move into a bigger flat designed for wheelchair users. Not bloody dwarfs lol.

    Keep on trucking xxxxxxxxx

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    1. I know what you mean. I go to a weekly physio with many people in your situation. I’m still trying to get up and walk on parallel bars but an infection last year left me really weak. But trucking I still am. (That was a very yodaish conclusion. All the best. Steve.

      Like

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