Independent Living - Aids & Equipment For Managing Fibromyalgia & M.E
Recently I had a very honest conversation with a Health Care Professional and even though I wasn't ready to admit that I needed some support for me to keep living independently, the conversation planted a seed of truth. I then went in search for the aids which would help me to manage my day-to-day symptoms more effectively, as well as some being supplied by the local NHS Trust.
When my search first started by punching 'Disability Aids' into Google I was vastly overwhelmed by the sheer number of aids that came up. It was then that I stumbled onto Nicola's vlog which describes viewers favourite aids to use! If you are newly diagnosed, or a veteran of Fibro, and are a little lost by where to begin with Fibro take a look at Nicola's YouTube channel. It will be one of the best things you can do for yourself in order to educate yourself. Remember knowledge is power!
As said, the range of equipment and aids out there is huge and what maybe useful to me, may not suit you. What I use helps me to navigate my daily life as a working person and mobility & self-care needs. They range from size and expense, as you will see below. I hope there is something of use to everyone and if not that it points you in the right direction.
What Helps Me?
Getting Out and About
Mobility Scooter: This was one of my first big purchases, which can be quite scary given the amount of money involved! But if money is an issue be sure to search your local area virtual market places; such as Ebay or Facebook, as there are always people selling them. However, make sure to ask the seller lots of questions and take it for a test drive to make sure it works and is the right model for you. You can also look at your local mobility shop which often has reconditioned scooters which come with some sort of warranty. My scooter has been instrumental in keeping me socially independent and I am able to enjoy days out because of it. Scooters come in all different shapes and sizes; some with 3 wheels which allow for manoeuvring tight spaces or 4 which provide more stability, Boot Scooters which can come apart and some which auto-fold at the touch of a button - these tend to be popular with people who travel shorter distances, as they need charging more often - I have an auto-folding one which is great if you have limited boot space and struggle to bend over to take it apart, Mid-sized Scooters are suitable for longer distanced travel and they are road legal so require to be registered with DVLA. Finally Road Scooters can reach speeds of up to 8mph and can be great for getting outdoors! Remember to take out some sort of cover for your scooter so that if you break down then you are not stranded!
- Boot Hoist: Now if like me you struggle to bend down and lift heavy things this could be something that you consider. As it allows you to go out independently with the use of your scooter and not need someone to lift it in and out of the boot for you. Also if you travel to a place of work on a regular basis and are able to use this or a wheelchair throughout your day, these are great!
- Walking Stick: If you struggle to keep your balance when walking (like me) or you need something to alleviate pressure on some part of your body when walking (me again) then a walking stick can be a great aid to use. They come height adjustable, self folding (to keep in your bag) fixed height and in all sorts of colours and styles. You can really show your personality with this aid by picking out your favourite colour.
- Fun Footwear: A lot of people with mobility issues struggle to find fun footwear, I cannot wear heels as they unbalance me even more. But I have a fun solution I have found some fun and comfortable footwear through designers such as Hot Chocolate and Doc Martens which have really allowed me to keep my identity and show my creative side.
- Passenger Assistance App: Sometimes you will be visiting somewhere you will need to go via train, this could be a regular commute to work in a wheelchair or a sporadic day out with friends. This app, available for Android and Apple, can be used used to request assistance for future journeys across the National Rail network. It saves the last minute panic of trying to get hold of Network Rail and allows you to just login into the app with ease and arrange your journey.
Personal Care
Invacare Aquatec Raised Toilet Seat: This was one of the first mobility aids that I purchased following a decision that the one supplied by the O.T had proved difficult for me to move around. This one is great as there is no frame which needs to fit around the toilet, which for me means nothing to fall over! It's great as the arms are easily pushed up out of the way to allow for extra room to manoeuvre around and the extra height allows for support to the lower body and reducing bending.- Bath Board: Currently indispensable to me and if trying to get in and out of the bath is not something you are able to do this will be something you want to look at. I stress this would only be suitable for someone with a shower over the bath. Most are adjustable to the width of you bath and can easily be fixed on to the sides. The rotating seat makes it easier to manoeuvre your legs in and out of the tub. However if you are looking for something to help raise you in and out of the bath I would suggest a lift, but make sure to check with your local O.T if you can be considered for one free of charge first!
- Grab Rails: These go hand in hand with the bathroom etiquette for me and are great if you lack the core skills to be able to move yourself around. These can be fitted securely to a wall via screws or can be stuck on via suction cups, the latter I have found are great for a quick fix!
- Adjustable Bath Step: This handy dandy little 'prop up' makes up the final item in my bathroom setup. It's great as its height adjustable, waterproof and allows me to manage the height between the bath and the floor without falling off.
- Adjustable Bed: When you are only able to sleep a few hours a night and experience extreme exhaustion, there is no price that can be put being comfortable. Having a bed which is able to be adjusted by the click of a button is priceless. Especially when you are in pain the majority of the time, being able to raise your feet or upper body can help you to tell the difference between sleep or awake time. This can in turn promote better wellbeing and mental health.
Lifestyle and Home
A Good Book: I don't think you can ever under estimate the impact a good book can have on your wellbeing and mental health. When I am feeling poorly and unable to get out of bed, I love opening a new book which lets me escape and disengage my mind with the amount of pain by body is feeling. Also if you struggle to hold a book, a Kindle is a good way around this problem as they are often lighter than a hardback book and can contain hundreds of titles.- A Perching Stool: This is something I use a lot around the house as it allows you to rest when you need to and if carrying out something which takes time you can just park your bum, when you need to! These come in a variety of shapes, but I find the one's with elevated handles the best as it allows me to get up without much trouble.
- Medication Organizer: If you have Fibro you will know what it's like to have 'brain fog' and when this descends it can feel like your mind and body are trying to wade through a swamp. So for such days this is a great tool and allows you to keep on track with your medication. It even allows you to take a section if you are going out for the day, which will fit easily into your bag!
- Over Bed Table: For those days when its simply to hard to move from your cocoon of comfi-ness! These bad boys allow you to have your laptop, phone, book, water and even a jigsaw on standby! Often light weight and height adjustable, they can easily be used from an arm chair for when you don't think proper adulting is possible.
- Dog Walker: If you struggle to get out and about on a regular basis and have a dog, a good way around walking them is to hire a local dog walker. But remember to read the reviews and ask for recommendations before handing over your fur-baby. Trust is definitely important on this one!
- Aromatherapy Fibro Massage: Not everyone would find this useful, however it is an important way that I self-manage my symptoms. As going for a relaxing massage which is tailored to avoid the Fibro pressure points of the body, using a blend of aromatherapy oils always makes me feel better and helps me get a good night sleep!
- A Long Handled Pet Pooper Scooper: So we spend a lot of time trying to look after ourselves but some of us need to look after our 4-legged friends as well. This is where I have found a tool which allows you to clean up after your pet without bending, which definitely comes in handy!
- Long Handled Pet Bowls: All pet owners know who have a chronic illness it's hard to reach down and pick up your pets bowls to refill. This bowl set has an adjustable height handle which allows you to easily reach down and pick up to refill!
