Time is precious when you’re disabled

People always say that “life is too short” and “time is precious”. This so true for many different reasons. You could have a terminal illness, a life-limiting condition or you could simply just get hit by a bus.

Another difficulty many disabled  people find in life is simply finding enough time to achieve things and enjoy life. Many people don’t realise the time it takes some disabled people to complete tasks such as dressing, washing, eating, reading, writing and travelling.

Below are five situations I have to encounter everyday that can be time consuming and doesn’t allow me to enjoy all the available hours in a day because of my disability.

Personal care

My personal care takes up a large proportion of my day. For most average people, going to the toilet, showering and dressing can take two to five minutes. Whereas, on a normal day, I spend up to 3 hours a day toileting, dressing and showering.

Morning care

In the morning, it takes me up to 60 minutes to get washed, dressed and have medication.

It begins with taking my sleep system out, which includes a knee block, bracket supports and cushions. Then I use baby wipes to wash my bottom and armpits. I then put my clothes on. This is all done lying on my bed.

Once dressed, I get hoisted into my wheelchair, put my seatbelt and foot straps on and put on a jumper or hoodie if required. I then get my hair brushed and put on my glasses.

I then head into the lounge to take my medication. One of my meds is Omeprazole, which helps with my gag reflux. I need to take this pill on an empty stomach and therefore need to wait another 30 minutes before having breakfast. Once I’ve had breakfast, I can then brush my teeth and wipe my face.

Evening care + showers

My normal evening care takes about 30 minutes. I tend to do my top half in my wheelchair then my bottom half on the bed. I then have to put my sleep system in, take my medication and brush my teeth.

Every other night I have a shower, which can take up to an hour. I prefer to shower in the evenings as it’s easier to put pyjamas on while still damp and I can go straight into bed afterwards.

I hoist onto my shower chair, remove my clothes and go into the shower, which takes about 15 minutes. I then go back into my bedroom to get dry and dressed. This also includes additional jobs such as drying my hair and cutting my nails. On occasions, I also dye my hair, which adds an extra half an hour on top of my usual shower routine.

Toileting

Since being fitted with my suprapubic catheter in 2018, I’m lucky to not need to access the toilet as much as I used to. Instead, I just empty my leg bag a few times a day, which only takes a minute. Before my catheter, I would have to hoist onto the toilet four to five times a day, which can take up to 20 minutes each time.

Nowadays, I only tend to use the toilet once a day to open my bowels. This can take up to 30 minutes as I need to wash my bottom with wipes after and due to my pelvic posture, cleaning me can take a bit longer.

Overall, I generally carry out all the same daily tasks as everyone else but just use mobility aids to help me and it takes more time to complete.

Physiotherapy

The only addition is I do physiotherapy on a weekly basis. Before Covid, I was attending hour long sessions at my former college Treloar’s, but currently I try 10 minutes of stretches on my bed.

Mealtimes

I do have some difficulties eating meals, which means it takes me slightly longer to eat a meal. Due to my gag reflux, I need my food cut up in bitesize pieces and cannot have large mouthfuls together (e.g a portion of meat, potato and veg on my fork at the same time). Plus, it takes me longer to chew certain foods such as beef and pork.

Also, this is not specifically disability related, but I learnt not to eat my food quickly. Back at school, I was getting ready for one of my Science GCSE exams. My personal care took longer than expected so I ate some cereal super speedy. Halfway through my exam, I managed to projectile vomit all over myself and I had to forfeit the rest of the exam. Surprisingly, even though I only completed two thirds of the exam, I still got a B.  Since that incident, I’ve learnt to take as long as necessary to finish a meal, which usually takes me up to 30 minutes.

Working

As a freelance journalist and blogger, I do a lot of writing and editing. Where I only have the use of one arm and registered blind, my workload is slightly more time consuming.

Attempted dictation but prefer typing

I have attempted dictation software in the past, but I found it too complicated and it makes too many mistakes, which I’d have to edit later. Plus, I have live-in care, so I don’t have much privacy when speaking aloud documents and messages.

Despite the length of time it may take me, I still prefer typing. I just wish I could learn touch typing one handed, especially if my eyesight deteriorates more. If you can suggest any ways of learning touch type, please let me know.

Navigating computer with Zoom

Another time-consuming element of work is navigating my devices. As I’ve mentioned in my MacBook accessibility guide, I prefer navigating the computer using Zoom then I use speech when reading articles and documents. I’ve never worked out how to use Voiceover all the time. Using Zoom does take me a bit longer to find my way around the screen, especially when it’s a page I’m not familiar with.

There is more to journalism than writing

Many people forget that journalism and blogging is not just about writing. Firstly, some content involves research beforehand, which takes up a proportion of time. The greatest challenge I face when researching is having access to the website or publication. Many sources I may not be able to see clearly even with Zoom and Voiceover may not be compatible with that particular page. Therefore, it can take me longer to find the relevant information. Even if the site is accessible, it also takes me time to navigate the content when I can only see a few words at a time. Additionally, in order to be a good, professional journalist, I still prefer to take that extra time to make sure my research is thoroughly done.

Once the article is written, I then need to spend time proofreading, editing and uploading it online. Once online, there is still other bits to include such as the fonts, hyperlinks, images, videos, categories, tags and SEO.

Overall, when I’m working, a simply 500-word article, which needs researched, edited and uploaded online, can take me four to five hours. Then if I add personal care and mealtimes into my day, that is approx. 10 hours of my day gone.

However, I’m passionate about journalism and I would prefer to take that extra time to write one quality article then rush it and write several rubbish, sub-standard articles.

Travelling

Although travelling has been very minimal this year, when I have been out, there is still additional time factors to consider as a disabled person.

Firstly, I use a Motability vehicle that my carers drive me around in. To get in the vehicle takes me several more minutes than somebody not in a wheelchair. I have go up the ramp then have four straps attached to my chair then my seatbelt.

When I travel by train, I’m advised to arrive 20 minutes before my train departs so the guard can get the ramp for me. However, I spend most of that time still waiting on the platform until a few minutes before the train leaves.

When I use the lifts to go up or down stairs in public places, it annoys me that I waste time waiting for a lift because it is packed with able-bodied people who can quite easily use the stairs and nobody offers to get out so I can use it instead.

It also irritates me when some buildings have their accessible entrances the other side of the main entrance, which means I have to go on a longer route to get into the building.

Compromising time with others

The final dilemma I have is to deal with as a disabled person is compromising my time with others, particularly carers.

As a teenager, I was known to not be a morning person and even now, I’m still more of a night owl. However, as I’ve grown up and my workload has increased, I’ve tried getting up at a reasonable time during the week. Unfortunately, some carers are opposed to me getting up earlier than necessary as they have to get up even earlier before starting my care or they need to do things before I get up, such as shower or, in my Mum’s case, walk our dog Sasha. I could be stricter and just say this is the time I want up and that’s that. But I don’t want the carers being grumpy or stroppy with me, which will bring my mood down too.

In the evening, I can easily stay awake beyond 12am, either finishing work, watching TV, reading a book or playing games. Fortunately, once I’m in bed, I can sit up using my profile bed and continue to do things on my iPad. The downside is there are certain jobs I find easier on my laptop so I have to negotiate what needs to be done before I’m in bed and what I can continue once I’m in bed. I usually have my showers at 9pm and my evening care at 10pm, which sounds reasonable but still feels restricted when I still have lots to do. Plus, I’m sure there are many people who don’t require care stay up longer when they’re busy or just fancy it, which is where I feel I’m at a disadvantage because of my disability. Sometimes I feel like I’m still at boarding school and I need a late pass to be able to finish work, watch TV, see friends or go to gigs etc.

All I want is either get up early so I can get all my work done or be able stay up later to get work completed and not be obligated to have care at a time that suits the carers. Fortunately for the carers, I’m a fair client and always sacrifice so they can have their rest. I do wish carers would appreciate this more though.

Time management is the key

So, as you can see, time is precious when you’re disabled. I’m sharing this not to be pitied or sympathised but just to make you aware that tasks do take longer for me and other disabled people. Therefore, people such as employers, clients, teachers, carers, relatives and friends need to be more understanding and flexible with disabled people when organising jobs, meetings, appointments, classes and social gatherings.

The key to using your time wisely is time management. Here are five steps you can take to manage your time as a disabled person:

  1. Be honest with your employer/client how much work you’re willing to do and ask for flexibility if required
  2. Create weekly to do lists to keep track of your workload
  3. Work out how long your care, mealtimes and other personal commitments take each day then work out how much time you can use for work.
  4. Compromise fairly with carers so you both get what you both need to make a good working relationship.
  5. Always make time for leisure activities and socialising.
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