What is a cockpit and why do you need one?

Most of us have a space we spend a lot of time in, for some it might be their bed, others their favourite chair, others a desk. What all of these places have in common is the way we personalise those spaces and build a ‘cockpit’ around ourselves. The idea isn’t a new one either. For people who work, either at home or in an office environment, it could be called a personal workspace which is tailored to your individual needs. 

As disabled people the contents may be different than for abled bodied people and we may have more than one depending on how our day is going and what tasks we need to get done. For those of us with mobility problems these spaces are crucial to our wellbeing in that they contain much of our daily lives. Having a well formed cockpit will allow you to save energy by having everything within arms reach, no more searching for the things you need, and with a little planning we can make them an amazing space.



Forming a cockpit

The contents of a cockpit are entirely subjective as everyone has different needs. Look at what’s on your bedside table, or beside your favourite spot on the sofa, and you will find an assortment of items you use constantly and that have ended up there organically. You may have a lip balm, tissues, medications, a notebook and pen, phone chargers, the list goes on. Having all of these things together, within easy reach, makes life easier but it can also get out of hand quite quickly if not kept tidy. For some of us the reality is that it becomes a dumping ground and then we can’t find the things we really need.

 You could spend some time and plan your cockpit ahead, or simply organise that space better now that it already exists, either way you should have a little fun with it and really make it yours. 

How do I make my cockpit functional and keep it that way?

One way to keep everything organised is buying a specific storage space for that area. It could be a rolling cart by your favourite armchair or a set of plastic drawers, or even a bookcase, what it is isn’t important as long as you have something. Then add boxes or baskets to keep like with like. For example a box for medication, one to keep lip balm and hand cream in, maybe another has notebooks and pens. They don’t need to have lids as long as they function for you, keep in mind how easy they are to access with your specific disability.  For those who suffer with ‘out of sight, out of mind’, also defined as a problem with object permanence, perhaps opt for clear boxes where you can see the contents inside or clear, large type, labelling. 

Make it your space

In the world of disability we often lose the personality of those spaces in order to make them more functional for our daily needs. Making our cockpits more personal is a way of taking back some of that sterile functionality and interjecting some life back into it. Love colour? Get rainbow stacking drawers! Stickers? Put them all over that space. Paint furniture items your favourite colours or add a bit of bling, colour theory can also come into play here with warm colours being comforting and cool colours more calming in their effects.

Bringing in your hobbies is a wonderful way of making that cockpit yours. Knit a blanket for when you get chilly, or make some diamond painting coasters, using your creativity can really change a space either for you or someone else. 

How to make a space for somebody else

In an ideal world we get to create our own spaces but unfortunately that’s not always possible. It may be that you need to create a space for an elderly relative or have someone help you make your space due to physical impairment. The most important thing here is to consider the person’s needs and involve them in the process. Ask what would make the perfect space for them, find out what items are essential and what aren’t, consider their mobility and eyesight. If the person needs to eat meals in this space is there room for a small table or tray or perhaps they need hot water, or cold, flasks to make their own drinks when getting up is difficult?

Another important thing to remember are the power requirements of the person’s needs. Do they need a fan or a phone charger? Do they have medical equipment that requires a power source? You could build an amazing space but if there’s no power it could be a game changer for some. 

It is important to consider the power consumption of each of the devices to ensure that extension leads, or cables, are not overloaded which can easily trip a circuit breaker, as well as be a fire hazard.

Other things to consider

The more you consider what to add the longer the list will get but it does help to get ideas from elsewhere. Below I’ve listed just some of the things you should consider when building a cockpit from scratch and this list is by no means a comprehensive one. For some it’s only a short term space, recovering from surgery for example, but for a lot of disabled people it’s the centre of their world. 

  • Lighting should be white, not yellow, with easy to access switches. Whilst yellow lights can be softer a white light will enable the person to see colours more clearly. This is important if the person likes to be creative in their space. If yellow lights are used then opt for a brighter bulb.
  • If the person uses a screen, either a desktop PC or laptop, it may be wise to follow Health and Safety (Display Screen Equipment) Regulations in setting up their space. I’ve added a link to this at the bottom of this post.  
  • Windows are fantastic for natural light but should have blinds or curtains for evenings or bright daylight. Remote controlled, or home assistance such as Alexa or Google home hub, blinds are a bonus if you can afford them.
  • Flooring. If the flooring is laminate ensure that it isn’t slippery and, if so, consider adding a non slip rug under the entire area. If the area is carpeted ensure there are no holes or loose edges.
  • Trip hazards. Ensure all wires etc are well tucked away to minimise the risk of falls. Avoid having small rugs, or the edges of large rugs, in the area to avoid tripping.
  • Add a way to hold a mobility aid, for example a walking stick holder, when not in use. 
  • Ease of use. Ensure the person can open closed boxes on their own. Try to keep everything within arms reach to avoid overextending. 
  • Access. There should be clear and easy access to this space without having to navigate furniture etc. Take into consideration if the person needs the use of a wheelchair or walker and ensure there is plenty of space to manoeuvre. This is also important should there be a need for an ambulance crew to reach the person. 
  • Get a grabber tool. These are amazingly underrated and really help when having to pick things up from the floor or lower shelves. CAUTION: Never use them for picking up hot liquids as this could be dangerous.
  • Seating should be suitable for the amount of time spent in it. It should be supportive, comfortable, and easy to get in, and out, of. It should also be able to accommodate any aids, should they be needed, such as lumber supports or pressure cushions. If foot supports are needed they should be non-slip but easy to move when the person needs to stand. 
  • If the person is not to be responsible for handling their medication do not leave it in their cockpit. Ideally this should be placed in a locked cabinet and the keys kept by those responsible for administering them. 

Health and Safety guidance for working with screens: 

https://www.hse.gov.uk/msd/dse/

Free advice about adapting your home to your needs.

https://livingmadeeasy.org.uk/

Graphics via:

https://www.freepik.com/

Spring in the garden

This time of year there are signs of Spring everywhere. From the green spaces around you to shops selling bulbs and seeds. It’s the time of year when people get excited about planning their gardens or allotments, maybe they are starting seeds, perhaps they are simply cleaning up after the winter, and it all seems so easy. That is unless you have a disability.

Photo By Guido Gerding

What happens when you can’t dig holes for your bulbs because you can’t bend? Can you pull the weeds out anymore? And what about pruning or removing dead shrubs?

One of the first things to do is to identify what it is you’d like to do and find the item most suitable. For example: before my disabilities prevented me bending I would use a trowel to plant bulbs. Now I need a trowel I can use whilst seated so one with a long handle would be ideal. The same for my weeding fork, I now need a long handled one as I can’t get down on my knees anymore, or is there something else that would help something more suitable.

It’s very easy to think that the only place you’re going to find the right tools is on disability website but this simply isn’t true. Whilst searching for a long handled garden cultivator I found a few that would fit the bill. One of them was £67.99 from a well known mobility website, the other was £6.92 from a building merchants. The only difference between them was a handle on the end of the first one. I solved this problem with a drill handle which costs £4.55 from eBay. It still makes it hugely more cost effective. Even more searching found the first, £67.99, cultivator for £27.90.

£67.99 OR £27.90 depending on site

Find what you want then search for that specific item to find the best price. If that’s still too much, find an alternative on a website not catering for the disabled. My favourite long handled cultivator comes from a local home and DIY store and cost a mere £4.50.

£.6.92 alternative

It’s an unfortunate truth that companies will put the word ‘mobility’ in front of a product to push up it’s cost, a cost which most disabled people can no longer afford during this cost of living crisis. Whilst I agree that it can take longer to find what you need, the difference in cost is worth the extra 10 minutes.

Being disabled doesn’t mean you can’t do things, you just have to do them differently.

Bright Blessings, Ellis

Sources:

Long Reach Garden Cultivator with Soft Handle

Amtech Heavy Duty Cultivator

Getting dressed

Getting dressed shouldn’t take so much energy and be so hard but, as is often the case for disabled people, it can be exhausting. There are some simple things you can buy to make life easier though. Most of these solutions cost less than £10 and are worth every penny. They are especially useful for those people who wish to remain as independent as possible or don’t have access to personal care.

The long Handled Shoe Horn.

Long handled shoe horn

My Grandfather used a shoe horn his entire life and I’m quite sure many people of his generation did too. It may have dropped out of fashion in recent years but for people who can’t bend properly, or reach their feet for any reason, the long handled shoe horn is a necessity. It allows you to lift the tongue so you can get your toes in, then acts as a slide for your heel so it doesn’t get caught or crush the heel of your shoe as you slide your foot in. No more tugging at the heel of a shoe to get it on. If you suffer with oedema it will allow you to get your foot easily in to a shoe that you might otherwise struggle with. There are two readily available versions. The first is a straight shoe horn that has little flex to it and the second is a shoe horn with spring. The one with a spring flexes and may be easier for some people to use. I got my first, straight, one when I had a total right hip replacement and I’ve used it almost daily since then. From slippers to winter boots I would recommend it to anyone.

The Dressing Stick.

Dressing Stick with shoe horn

The dressing stick is an all in one dressing aid. It has a fixed shoe horn on one end and a curved hook on the other. If you have restricted movement due to your disability this can help with that by being an extension to your arm. It can push, when taking off trousers or socks, or pull, when pulling on a shirt or cardigan. This is especially useful for people who simply can’t reach, bend, or twist to dress. There are plenty of easy to find videos on YouTube which will show you how to use one if you aren’t able to speak to an occupational therapist about it.

The Sock Aid.

Sock aid

Much like the long handled shoe horn, the sock aid is a must for people who can’t put their own socks or stockings on. You simply slide the aid into your sock, drop it on to the floor whilst holding on to the handles, then slide your foot in and pull. They work best with socks that are a little on the loose side around the cuff such as diabetic socks. A compression sock will just squash a normal sock aid and you won’t be able to get your foot in it. If you do need to wear compression socks I would suggest buying a sock aid designed for them. These tend to be much more sturdy and you either need to be able to bend or have someone to help. Socks aids come in single foot or both feet designs depending on how you wish to use them. From personal experience these type of aids won’t always pull your socks up high enough so I use a grabber or dressing stick to finish the job.

Button Hook/Zipper Pull

Button hook / zipper pull

Many years ago I worked in nursing homes here in the UK and I remember having to ask the families of those in my care to change the clothes they bought in. Arthritis and other disabilities meant that many of those in our care could no longer fasten buttons or zips on their own, and we simply didn’t have the time to help them. Since then I’ve met many people, of all ages, who have the same issues with fastening clothing and could really have done with this little gadget.

One end has a C hook, which easily slips through the end of a zipper, allowing someone to do up a coat or trouser zipper for example. The other end has a modified loop. To use it you slip the modified hook through your button hole, loop it around the button, then pull the button through the hole and slide the loop off. Once again there are quite a few YouTube videos which explain it visually much better than I can describe in text.

All of the above are easily available in local mobility shops or online.

With kind thanks to Wendy and Mim for all their help.

Change of direction

For the past couple of years I’ve been considering building a website to help people with chronic illness and disability. The problem was that I had no idea where to start a project this big or if I was ready to take something of that magnitude on. Breaking it down in to smaller chunks was the only way to make a start so here we are, making a start.

I’m going to start with documenting on my blog and maybe, if it gets big enough, I’ll move it to a dedicated space. The basic plan is to make one post a week, with pictures or other media, and try and put them under easy to find headings such as kitchen gadgets or dressing aids. I’m also hoping that I can get a few people to chip in with their ideas to make sure I talk about a wide variety of subjects.

The first post should be ready by next week. I have ideas but need to spend a little time fact checking before going live with it as I have no wish to, knowingly, publish anything that isn’t correct. Fingers crossed I can help a few people with this. Even I only help one person I’ll be happy.

Bright Blessings

A busy day

Today has been another busy day, the kind of day I wouldn’t have managed a month ago. I’ve recently had a total change of my medication and it’s taken me from being being a sleepy, pain filled, non functioning person to one who can do ‘ALL THE THINGS’.

For many years I’ve simply accepted the medications and advice from my GP and I think that’s quite normal for most of us. During the Covid restrictions my health started to plummet into realms I didn’t want to stay in and I decided to take control. It’s been a hard fight so far to get medication changes and there are still things I need doing, referrals to specialists being a priority now, but taking the time to research medication regimes for your disabilities is key to getting the right help.

In the UK the NHS uses something called NICE guidance for any illness and disability a GP is presented with. One of the things you need to realise though is that these are just guidelines, it’s not set in stone and doctors should consider individual patient needs. On the other hand, knowing the NICE pathway for your illness can really help you get what you actually need especially when a doctor tells you there’s nothing more that can be done. These guidelines are all easy to access for patients if you know where to look so I’ll add a link for you at the end of this post.

Medication alone doesn’t fix things. So many people I know would love to have a magic pill that fixes all your problems and enables you to live a ‘normal’ life but it simply doesn’t work that way. You need to have the right mind set and attitude as well as a fighting spirit. Despite all the talk of equality, people will still treat people with disabilities as second class citizens, a drain on society, of little use to anyone. You need to fight every step of the way to get help and be heard and yes, I know it’s tiring, draining, and exhausting.

You aren’t alone if you feel like this but exercise caution. Not every forum, Facebook group, or coffee morning is helpful. Don’t be afraid to find people with a positive mindset and leave behind those who are happy to wallow in their problems.

Where to start

It’s very strange starting a blog. I mean, what on earth do you write as a first post? I have a few rambling ideas so hang in there.

My life has changed beyond measure in the past 3 years and I now find myself living alone for the first time in my life. Even when I wasn’t in a partnership I had my children with me but they are all adults now and have left to live their own lives. Whereas before, in my past life, I had no reason to worry about money I now find myself having to be frugal. That’s where it gets a little stranger, frugal seems to mean many things to many people. For me it’s not just about money but about mental, and physical, energy or spoons as I call it.

In order to save physical spoons I have a cleaner once every two weeks. Some people might be horrified that I’m spending money on something like that but when you’re disabled you need to save energy where you can. For just £10 this wonderful woman helps me do the things that totally wear me out and leave me exhausted for days after. She changes my bed, cleans my bathroom, washes my floors, and many other things. On a really bad she’s happy to make me lunch and make sure I have everything I need. In terms of frugality she’s worth every single penny and more.

In order to save mental spoons I have family members who help me with form filling, keeping my finances in check, and support me during the many, many, hospital appointments I attend.

Within this blog I hope to explore more about the meaning of frugality, especially frugality when you’re disabled as it’s really not cheap! I hope you bear with me and leave comments, I’ll try to answer them best I can.

Bright Blessings

Ellis