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Tips for Living in Bed

Tips for managing your life in bed

 

Danni in bed using a laptop on her trabasack

Dannilion, one of our top fave bloggers: http://dannilion.com/

One of our loyal Trabasaxons has recently written a post giving fantastic hints and tips for people who have to spend a lot of time in bed. Danni wrote the post Perfecting Bed Life earlier this month and this post is inspired by her wonderful work with a few added tips of our own.

Living with M.E. has meant Danni, in her own words, has ‘spent nearly every moment’ in bed for the past few months. Despite this she’s adapted and her post on how to make the best of managing your life from bed is extremely inspiring and we couldn’t help but highlight and share some of her top tips. Danni highlights a wide range of valuable products and ideas which can make living from bed a little easier.

Essential Gadgets for Long Term Stays in Bed

trabasack bed tray holding an ipad with a media mount

Trabasack and Multimedia Mount ideal for use in bed

Getting used to an adapting to living from bed is difficult but here are a few tips that could be considered essential to your new routine and lifestyle.

Danni recommends investing in an over-bed table to make accessing things you need regularly easier. It’s also helpful for watching and using multimedia devices up close. An over-bed table falls short when sitting up becomes an issue and Danni suggests using your Trabasack in this case and a Trabasack is also an affordable alternative if you’re not sure about the space for an over-bed table in your home.

Danni also recommends another of our favourite products – the Hydrant, for drinking from bed as it stops the risk of any spills and they can be bought in large sizes. Replacement ends are needed when the device has been used regularly for a number of months. Hydrants are now used by the NHS to help ensure patients are kept hydrated in hospitals.

We also like the handsteady drinking cup that allows you tilt the cup right back using the rotating handle.

Infographic showing a hand holding the handSteady cup with information about how it works.

The handSteady drinking aid stays upright, is easy to tilt and always keeps steady. Click this image for more info.

Another simple yet essential tip from Danni is her suggestion that you should have as much stuff as you possibly can within reach. It’s not always possible or appropriate to call someone to get stuff for you and maintains a degree of independence. This could mean having shelves installed near your bed or putting key items on the bed next to you where there’s space. Bedside tables are ideal for storing snacks and medication.

Another alternative that we featured in a previous blog is a Telestik grabber or Handi reacher to extend your reach and access things that have dropped to the floor.

From a personal perspective it makes sense to keep the room as nice as you possibly can. Danni highlights that some people need rooms to be non-stimulating but others can benefit from nice pictures or being able to see out of the window.

Exercise and Pressure Sores in Bed

Another essential key point is to remember to keep moving as much as you can. It is very easy to slip into the habit of staying still once you’re living from bed but as Danni warns, bed sores are a genuine risk. If you can move yourself it’s best to try to do so as much as you can, whether it’s wriggling, rolling or whatever is best for your circumstances. If you’re unable to do this then it’s essential you have help to move position every two hours or so. Some people use sliding sheets or towels to help them roll and move in bed with the help of another person.

Bed sores or to use their technical name pressure sores develop when a large amount of pressure is applied to an area of skin over a short period of time. They can become extremely painful and hard to manage and therefore keeping active from bed, in any way you can, really is essential. As Danni also mentions, a low cost idea is using a sheepskin can help with making the bed softer. If you do not move much and are spending long periods in bed it would be good to also ask your occupational therapist about a special mattress or even an inflating one.

Keeping in Touch

Our final essential point is to ensure you have an effective way of contacting your carers. This could be via a telephone, computer or if you live alone a panic button or cord. Wireless doorbells are another way of connecting with someone who may be in another room when you need support.

Comfort

Microwaveable Penguin Plush


Here we’re once again taking inspiration for Danni and covering some of the ways to make your long-term stay in bed as comfortable as possible.

Comfort is one of your top priorities and as Danni says ‘most clothes are not comfortable for lying in’ and there are clothes which are better. It’s understandable you may not always want to wear pyjamas and t-shirts and leggings make a good combo. Danni also makes the great point of saying a cardigan or zip-up hoodie is a better option than a jumper as it’s easier to take on and off.

Cushions and pillows are also great for comfort and u-shaped body pillows, often marketed as maternity products, can be a great option. They can be very supportive and can help you sit up if you find it difficult. The types of cushion and pillow which suit you will be very personal and you may want to try out different types.

Danni also highlights her trademark microwaveable penguins as great for keeping warm if you have difficulty moderating your body temperature. They can also ease chronic pain and aches of different kinds and if you don’t fancy a penguin there are plenty of microwaveable body wraps and other animal characters too.

Personal Care

Inflatable Basin

Your personal care is a very private and personal affair but there may be elements you need help and support with, especially if you’re unable to get to the bathroom.

Bed baths are great but as Danni says if it’s not always practical then bath in bed wipes are a good alternative. They’re large and designed for getting fully washed in bed – they also avoid the need to be dried afterwards.

Hair can be another issue, Danni went for the chop to make managing easier but there are options for keeping your hair clean. Dry shampoo works for a few days but isn’t a long-term solution.

No rinse shampoos
exist too to avoid excess grease or you can buy a shampoo cap. An inflatable basin is the best option for proper hair washing, along with lots of towels to ensure you don’t soak your bed right through. A waterproof mattress protector is a complete essential and guarantees your mattress doesn’t need replacing regularly.

Toileting in Bed

uriwell

There are various toilet aids that can help in bed

Toileting is another personal care issue you’ll need to handle and as Danni says for most people it’ll mean using a bedpan or incontinence pads. It’s not the most pleasant of issues but it is something you have to deal with. If you can manage a commode then this is a good option and there are personal toilets such as the Uriwell range which can be useful. There are a range of different bedpans on the market and as with the pillows it’s worth finding out which is best to suit your needs.

Entertainments and Extras

Keeping entertained and motivated is one of the main concerns if you’re living from bed. Mental stimulation may not always be something you need dependent on your illness but keeping entertained is key to avoiding further problems such as depression.

Comfortable SleepPhones


Danni highlights a laptop, tablet or internet connected phone as a hugely valuable resource as it gives you access to social networks, games and you can stream television and films. What works best for you will depend on the level of fine motor skills you have maintained and if you need further support your Trabasack and Media Mount combined can keep your tablet or smartphone perfectly in position.

A tablet is a great idea. You can watch films, talk to friends via social media and email and listen to music using something lightweight like a kindle fire.  if you like to read as you can access the Kindle app and read to your heart’s content when you’re well enough. If you are reading a traditional book there is the Page Keeper that can help keep track and hold your page open. Danni also recommends the uniquely designed SleepPhones as they’re designed to be worn in bed so extra comfortable.

Additional extra can include everything from an eye mask to make sleep even more restful to fans to keep you cool in summer, which can be no mean feat when living from bed. Other gadgets you could consider include remote controlled lights and electric switches and this makes another job which you may have relied on others for something you can do yourself.

The Most Important Point of All

Taking Danni’s word once more:

Try to remain positive. Living in bed is not the end of the world. It may not be what you choose but it doesn’t have to be completely negative. I find joy in many things while being in bed, and though I do want to get out and back into my wheelchair, it hasn’t been all bad. Bringing my computer in here so I could use it in bed was one of the best decisions we made.

Your Tips for Making the Best of Long Term Stays in Bed

Please share any tips or gadgets that you find useful or any comments that you would like to share below.

Essential Items: The RADAR Key is being relaunched

UPDATE 2019

We now have information regarding the new 2019 RADAR key – The genuine, Gold Standard NKS / RADAR key are manufactured in Britain from solid brass, and the updated key has a great number of accessible features that differentiates itself from cheaper, unreliable Chinese-imports (with red silicone heads).

The new RADAR key is compatible with all 10,000 high-security, 6 lever RADAR locks found on disabled toilets, changing places and accessible routes around the UK.

  • Made from durable, solid brass.
  • Available in two head sizes, including a large head for those with limited dexterity.
  • Octagonal-shaped shaft that can be instantly identified by touch alone.
  • Each key is quality tested by a British master locksmith, to ensure a quality key.
  • Fully rounded nose and smooth finish to avoid sharp edges that could cause cuts or obstructions when inserting into the lock.
  • Embossed with the RADAR logo to assure genuine, dependable quality.
Image shows the two sizes of RADAR key placed flat, lengthways, on a white background

The new, genuine, brass RADAR key.

The new, improved genuine brass RADAR key can be purchased with confidence via our sister website – shop.DisabilityHorizons.com – the store features all models of our multi award-winning wheelchair tray and bag in one, alongside a plethora of daily living aids such as the RADAR key.

 

UPDATE! The RED KEY is not a RADAR key!

Just received this email from Tom at RADAR.

The red plastic headed key that you show on  is not a Radar key at all.
It is an inferior Chinese knock off, poorly manufactured, poorly cut and with sharp edges to boot -everything that you would expect of a cheap Chinese knock off.
Despite being refused permission for many good reasons, they shamelessly tried launching it as a Radar key-until they were instantly forced to remove from their showstand, all literature and signage which described it as a Radar key.
Please inform sales@radarkeys.org of anyone trying to sell it as a “Radar key”.
The new Radar key is still under development.
Unless it says Radar on it, it isn’t!
Genuine Radar keys genuinely open all the locks.

 

red covered key with improved grip for RADAR toilets

The Fake Red Plastic-Headed NKS/RADAR key

We still have stocks of the Genuine keys at a market leading price including postage of £4.95

Click below to buy:

Click here for a Small head, easy to carry, official RADAR key, £4.95 inc P & P
Click here for a Large head, easy to turn, official RADAR key £4.95 inc P & P

Purple Day 2013

Logo for Purple Day - illustration of a purple and green globe, with a green ribbon wrapped around it

Purple Day was founded in 2008, and is celebrated each year on March 26th

International Purple Day: Raising awareness of epilepsy

Purple Day is a worldwide event dedicated to raising awareness about epilepsy. Since Canadian Cassidy Megan created Purple Day in 2008, March 26th has seen people from across the globe join together for the cause.

Supporting Purple Day can be as simple as wearing an item of purple clothing. However many organise events to not only raise money for epilepsy charities, but to give people a chance to discuss epilepsy and meet others with the condition.

600,000 UK people living with epilepsy

Purple Day offers fantastic support for those who suffer from epilepsy as well as their families and friends. There are currently over 600,000 people in the UK who are living with epilepsy. Yet despite these numbers the condition is still often misunderstood by the public. 1 in 10 people will have a seizure  at some time in their lives.

Epilepsy is a condition that is characterised by seizures. A seizure is caused by a disturbance of electrical activity in the brain. This can then can manifest itself physically

Image of Cassidy Megan - Puple Day founder - young girl with freckles and dark wavy hair

Cassidy Megan – founded Purple Day to raise awareness and dispel the myths surrounding epilepsy

in a number of ways. Seizures can be mild or severe. A mild seizure can cause brief loss of consciousness and loss of muscle tone. However more severe seizures  can leave the sufferer totally unconsciousness and their body stiff.

Do and Don’ts for Seizures

If you are with someone and they are having a seizure that causes jerky body movements (know as a  tonic-clonic seizure ) you should do the following:

  • move them from anything that could cause them injury, such as a hot stove or away from traffic
  • note the time of that the seizure began, this can be important for medical treatment later. Try and time the seizure.
  • rest their head on clothing or a cushion if they are on the floor
  • help them to breathe by loosening ties, scarfs or other tight clothing around their necks
  • when the convulsions begin to stop, put them in the recovery position by turning them on their side, again keeping their airway open
  • reassure them and talk to them gently. Having a seizure causes embarrassment and anxiety. People are often confused when they come round. Stay with them.

 

Don’t put your fingers or anything else in the person’s mouth, they will not ‘swallow their tongue’ although they may bite it but it will heal and not cause lasting damage. Putting anything into the persons mouth could be dangerous or cause them harm.

When should I call an ambulance?

 

People with epilepsy may have seizures quite frequently and do not need to go to the hospital each time. Most seizures last less than 5 minutes. The person will usually be able to let you know if they require an ambulance or not. People with epilepsy may have a mediband, sos bracelet or necklace or carry an emergency card to let people know what to do.

You should call an ambulance by dialing 999,  if:

  • you know that the person has never had a seizure before
  • the seizure goes on for more than 5 minutes
  • seizures occur in a series, and they appear to stop, but then begin again
  • the person does not regain consciousness or is having difficulty breathing

Dravet Syndrome

 

Although epilepsy is relatively common in the UK, there are rarer epileptic conditions. My son has Dravet Syndrome which is a rare and life-threatening form of epilepsy that is diagnosed in children. Dravet Syndrome affects around 1 in 30,000 children in the UK. Whilst this is rare, they are around 200 families on our UK Dravet Facebook group.

 

Many children who are diagnosed with Dravet Syndrome develop normally until they have their first seizure around 3 to 6 months old. After the epilepsy begins children will gradually lose the developmental skills they previously had and find it hard to progress and learn. The developmental issues that occur with Dravet Syndrome can cause delays in speech and language, motor skills and the functioning of the nervous system.

Whether it is rarer forms of epilepsy such as Dravet Syndrome, or common forms – the effect of the symptoms strongly impact upon the quality of life of those that have epilepsy. That is why global awareness raising events like Purple Day are so important in raising funds and over coming the stigma that can come with the condition.

The XL Challenge

 

A fun way to support Dravet Syndrome charities and epilepsy research this year is to follow David of thexlchallenge.com. David has so far completed challenges including a dip in the sea for New Years Day, fun runs, eating bugs in a bush tucker challenge, half marathons and Terror nights!

 

David is doing 40 challenges in his 40th year and raising lots of money and awareness of Dravet Syndrome and epilepsy along the way.

dravet syndrome fundraising

David after a charity run in Cypress

He still has many unusual tasks to complete this year, follow him on twitter, check out his page and sponsor him!

 

Getting Involved in Purple Day 2013

Photograph of two pairs of purple Greeper shoe laces, one in sealed in a packet and the other open and on display

A pair of fantastic Greeper Laces are on offer to anybody who mentions purple day on their blog and links back to us.

To celebrate Purple Day 2013, we are offering a 10 free pairs of purple Greeper Laces to our readers who are willing to share their thoughts on the event.
Perhaps you’re hosting a Purple Day party, or taking part in a sponsored event? Epilepsy Research UK offer a fundraising pack filled with ideas to raise awareness and bring support to those with epilepsy this Purple Day. From wearing purple to school or work, or even dying your hair purple – like Helen Webster of Salisbury.

 

 

 

Purple Day Laces Giveaway!

We’d love to hear your Purple Day stories or accounts of living with epilepsy. Or even a mention of Purple day on your blog to help raise epilepsy awareness. Simply write a short blog post (at least 200 words) and give Purple Day  a mention, leave a comment below. We will send you a free pair of  awesome ‘once applied always tied’ purple Greeper Laces. (offer limited to UK residents, 10 pairs to give away!) **Sorry Offer Now Closed**