Living with Still’s can be tough! In this section we share some tips and tricks to help…
We’d love for you to add your own ideas of what helps you. Just add a comment below so we can gather a mixture of ideas to share :)
Spoons??? What have spoons got to do with it???
In a disease like Still’s, fatigue is a big part of the problem. This fatigue has been discribed in terms of spoons by the creator of the Spoon Theory – a link you’ll find on the right. To sum it up; Spoons are used as a metaphor for pieces of energy (see the link to the spoon theory on the right for the original description). A healthy person has endless spoons per day, however a person suffering from a chronic condition like Still’s have a limited supply…
We wake with different amounts of spoons depending on the severity of the disease, whether it’s a good or bad day or however many we used yesterday etc. Then every task we do spends spoons;
1) Taking a shower – but first getting undressed for the shower spends a spoon, realising it’s time to wash your hair too adds another.
2) Getting dressed – all that bending even if like me it’s essential to dress sat, winter clothes are more numerous so more costly too.
3) Making breakfast – extra for the coffee, many if it’s a cooked brekkie, but you probably feel nauseous anyhow so maybe skip that!
4) Feeding the dogs/kids – the dogs are a big yes, I have to be top dog, but the kids now fend for themselves – spoon saving is a must!
5) Making the bed – don’t forget the curtains to open too so another spoon. Hence why my bedroom is always a mess!
We’ve not got to the point of leaving the house and on a bad day there are very few spoons left!!!
So what do we do??!!
Pacing is a good trick – this pretty much means spreading the tasks over 10 minute slots and resting in between. So after the shower, lay on the bed and rest before dressing. Take another rest before brekkie time – you get the picture…
So spoons??? Perhaps the most essential part of Still’s – the joint pain stops us moving but it’s the fatigue and flu-like symptoms that really stop us moving!!!
Ice or Heat??
Some pain and symptoms are helped by ice, others heat. From my experience the advice isn’t easy to follow and varies from person to person.
For me I find taking a warm shower, or if you can manage a bath helps to give some movement and relief for a short time. An alternative using heat wheat bags or a simple hot water bottle on the worst joints can also help.
For swelling or those hot joints you may like ice? If you want to try, a bag of frozen peas or anything like that placed on the area is worth a try…
Or more commonly known as aids and adaptations, can be essential in making daily day to day life liveable. There are a whole host of things out there that can really make all the difference. For help you can ask to be referred to an Occupational Therapist, as some things are available free on the NHS too.
So what kinds of things can we recommend? From big to small, it depends on what it is your struggling with…
Examples range from Shower and Bath seats, to toilet frames, stair lifts or perching stools for the kitchen. Whereas the little things help with hand function, so things like chunky handled cutlery, electric can openers, sock/stocking aids, tippers for the heavy kettle, jar openers, the list goes on. Then there’s the car too – a twizzle cushion to help getting in and out or a grab bar too.
So our advice is, if you struggle doing something then ask. You can be sure there’s likely to be something out there to help…