Pretty much everyone who lives with a chronic illness experiences a “flare up” in their symptoms from time to time.
Sometimes it can be brought on by stress, working too hard, falling out of a routine such as doing your regular physiotherapy or even something as seemingly benign as the weather changing. For any non-spoonies reading this, a flare-up is when a persons everyday symptoms become worse than usual and life becomes that much harder to deal with. Some people might experience this as increased pain, some as heightened levels of fatigue while others may get a combination of symptoms associated with their condition. A flare can last for anything from a few days to several weeks.
I thought I would share 8 self-care tips for getting through a flare up:
Microwaveable wheat bag “hotties” are an absolute saviour for me during bouts of chronic pain or muscle spasm. The warmth helps relax the muscles and relieve pain plus they’re a lot easier to manage with bendy hands than a regular hot water bottle. You can get ones with lavender or other herbs in them which can help with relaxation and you can get them in all kinds of shapes and sizes; everything from cuddly animals to more ergonomic designs.
Soaking in a hot bubble bath is great for relieving tightened, sore or spasming muscles or painful joints. Many people swear by using epsom salts or relaxing oils in their bath water. Hot baths are something to be very careful with if you suffer from autonomic dysfunction such as PoTS but if you’re able to do it it can be very helpful.
Cuddle your pets! Having my dog Wilma with me when I’m at home laid up really does help. She’s like my own little nurse, she knows when I’m in pain or feeling ill and will come sit by me and offer her company, attention and of course kisses!
Cut yourself some slack! If you have to cancel something or push back a deadline the world won’t end, trust me. No, you really can’t take on that overtime or baby sit for your cousin right now.
Take good care of your skin, as all of your body’s resources will be directed towards healing the skin is one of the first areas to suffer. When our skin suffers and we break out in spots or become very dry it can really knock our self-confidence and actually hinder our recovery. If you can find a mobile therapist having an at home facial is a wonderful way of pampering, relaxing and looking after your skin. Many therapists also specialise in massage therapy which is very valuable for those who suffer from fibromyalgia or chronic pain.
Talk about it! Being chronically ill is a very isolating experience and many sufferers go on to develop depression. It’s important to verbalise what you’re going through and feeling to someone – even if at first it’s just your dog! The internet is very helpful in this regard as there are many spoonie groups and forums you can join.
Use pleasant distractions to help you cope with pain flares. Watch a film or TV show you love, indulge in your favourite crafting hobby or read your favourite glossy magazines. Whatever you will find engrossing enough you get to forget about feeling crappy for an hour or two.
Get plenty sleep. We all know good quality sleep is important but for many spoonies it’s something we often struggle with. I say if you really need to take a nap then take one, I do however try not to do so after about 3pm as I don’t want to impact on sleep at bed time. What I wouldn’t do is hang about in bed all day awake if I could possibly help it, that is much more likely to impact on sleep quality and quantity at night than going for an hour nap.
If you’re a spoonie, how do you self-care during a flare up?
As today is International Wheelchair Day I thought I would take the opportunity to do a short post on wheelchair etiquette.
Many people still don’t know how to react to a person in a wheelchair and behave in all kinds of bizarre and embarrassing ways they wouldn’t with any other adult or bodily appendage.
So for today’s blog post I have come up with 10 tips for when you meet a wheelchair user:
Don’t assume that the wheelchair is a tragedy. For many of us our chair is our freedom, something that allows us to be out in the world like everyone else.
Never ever jump straight in with questions like “What happened to you?” “How did you end up in there?” or “What’s wrong with you?” – if you don’t know us, our medical history is no more your business than that of any other stranger you might pass the time with.
If you have children, they will stare. It’s in their nature to want to understand and learn about new things. Talk to the child about disabled people, and help them to understand why people use wheelchairs. Don’t discourage children from asking questions of a person who uses a wheelchair about their wheelchair – we are friendly! Open communication helps overcome fearfulness and leads to a better future.
Always ask if a person would like assistance rather than just jumping in and helping. This is important because many of us like to be as independent as possible and also because we have to make sure to use what function we do have in order to keep our fitness levels up. It can be absolutely terrifying if a stranger ‘helps’ by pushing your wheelchair without asking, please never do this.
Do not lean on a person’s wheelchair. You wouldn’t lean on any other stranger in a lift or on a train so why do people think it’s OK to lean on me? My wheelchair is not only inside my personal space it is an extension of my body. Leaning on a wheelchair is not only rude it can cause pain to the disabled person and can be dangerous. Manual wheelchairs are often quite ‘tippy’ so we can get ourselves up low kerbs and your weight on the back could be enough to topple the chair over backwards.
Speak to the person in the wheelchair not another person who is accompanying them or pushing their chair – even if that person is an interpreter. Never assume another adult they are with is their carer.
It is OK to use normal everyday terms like “run along” or “let’s go for a walk” when talking to a wheelchair user – we don’t expect you to use special language. I always say I walked somewhere even though I went in my chair, rolled just doesn’t work somehow!
If a person has an assistance dog never pet it without permission. Distracting assistance dogs is dangerous as owners rely on them for many things including detecting danger or sensing oncoming epileptic seizures.
Don’t be shocked if a wheelchair user should stand up to get something. Many wheelchair users can do a small amount of walking using aids suited to them. Wheelchairs serve many different purposes for people with many different types of disability from cerebral palsy to paraplegia to Ehlers-Danlos syndrome. Wheelchairs help us deal with symptoms such as severe fatigue, pain, fainting, limbs that don’t co-operate or even all of the above.
We’ve heard all of the “speed limit” and “driving license” jokes before, you’re not original or clever – sorry! I know it can be hard to come up with small talk but please leave these cliché phrases at home.
Most importantly focus on the person and if you are unsure – ask!
When I say “the power of make-up”, I am probably coming from a slightly different angle to some of the other beauty bloggers and vloggers out there, many of whom have done transformative videos showing before and after uber-glam make-up applications. Why do I approach it from a different angle? Because I suffer from multiple chronic disabling health conditions, Ehlers-Danlos Syndrome hypermobility type being the main one. EDS likes to bring along some friends, and it’s unusual to find a “bendy” who doesn’t have multiple diagnoses.
For those of us who are chronically ill, and also for the many people who suffer from skin conditions ranging from acne to psoriasis to hyper pigmentation or vitiligo – not to mention others battling mental health issues – make-up is like armour. Make-up helps us feel ready to deal with the way that the world sees us and our conditions and gives us a defence against everything that society throws at us as a result. With make-up you can not only be whoever you want to be but also whoever you need to be to survive. It’s not unusual for chronically ill/disabled people and those with skin conditions to have suffered extreme bullying because of the way they present to the world, all thanks to the very body or skin they were born with and have no control over. Make-up allows us to build confidence and to fend off the jibes and the comments because it gives us the ability to appear well – other people’s “normal”.
Hiding our illnesses and looking “normal” helps many people feel able to carry on. The onset of an illness is a huge change in our lives and we can feel as though we are no longer the same person, especially with serious illnesses like cancer which can affect one’s appearance greatly. A person’s identity can seem to have fallen away along with the clumps of hair. When we have a serious or chronic illness, every time we see people – even strangers – they seem to feel the need to point out how ill or tired we are looking. How pale we are these days. Painting on a “normal” non-sick face avoids the endless comments and reminders of our condition, just as for a cancer patient wearing a well-chosen wig avoids disclosing private medical information to all and sundry.
It’s a fairly a well-known fact that looking good can improve the way we feel on the inside. When we suffer with a chronic pain condition, we can wake up feeling like we’ve had ten minutes sleep (when in reality it may have been anywhere between 8 and 10 hours!) and looking absolutely wretched. Yet we know that we absolutely have to carry on and do XYZ tasks – and in this situation it is very helpful to have the tools that make-up provides. A bit of base and concealer later and the dark circles are covered, a touch of blush puts the colour back into one’s face. We can, for a short while, pretend not to be sick. It is possible to fake wellness, and this actually helps the way we feel on the inside even if only a little bit.
Small beauty rituals provide coping mechanisms for anyone and everyone. When we go through rough patches such as losing a job or even the death of a relative, a little self-care and pampering is good for anyone. Equally, when going into a work meeting or interviewing for a new job a fresh coat of lipstick can provide one with a confidence boost and help us feel ready to face it.
To say that make-up is “not feminist”, “just about vanity” or “only for men’s benefit” when it helps so many women (and men too) to feel better about themselves or their condition – it can even help manage pain levels – not to mention providing a livelihood and simple enjoyment for many is to me a bizarre statement showing very little understanding of women (and some men). If a person chooses not to wear make-up, to “embrace the skin they’re in” and the look they were born with naturally, more power to them. But to moralise at those of us who choose to use make-up for many reasons far more complicated than simply wanting to stare into a mirror like a modern Narcissus is badly thought out and shows a kind of ‘health’ or social privilege. Not all of us were lucky enough to be born blessed with a natural skin or look that the world at large finds acceptable, or that people (friends and strangers) don’t feel the need to comment on in a way that negatively affects our self-esteem. Step into our shoes and you will find that it quickly gets old when people are constantly pointing out how pale and ill we look, that we must need more sleep with dark circles like that, or how “disgusted” they are by our medication-induced acne.
In another post I’ll cover products I use to help paint on my normal “non-sick” looking face.
As a result of my Ehlers-Danlos Syndrome I use a wheelchair a lot of the time. It helps me to deal with hip subluxations, pain and pacing. My wheelchair is something that goes pretty much everywhere with me.
Rail travel for us wheelchair users has improved dramatically over the years (we used to travel in the freezing cold, dark guards van with the bicycles if we were lucky enough to travel at all!) but is still sadly lacking in several important areas – not to mention being one of the most stressful things you can do whilst on wheels. Even the phone call to book the assistance ahead of time can be a nightmare as you explain the journey you wish to complete and slowly fix the computer errors that come up (eg. computer wants you to do a ten minute transfer, which is simply not possible when you need to wait for a man with a ramp for each train and then wheel between platforms!) and they inevitably misspell something crucial no matter how precise you think you’ve been. This can lead to the station not knowing who you are (because they spelled your name so badly it doesn’t even resemble how you might pronounce it to the reader or got your email address wrong so you have no copy of the booking for yourself to help solve issues like the one above.)
Having just done two long trips via London, here’s my current list of irritations and annoyances:
Stations with broken lifts or lifts that only operate between certain hours making the station unusable after a particular time of day,
Booked assistance that fails to show up to get you off a train at your destination so leaving you to struggle and wave from the train door hoping someone sees you or rely on a kind stranger to prevent you from ending up in Timbucktoo,
Mountains of luggage in the wheelchair space despite the clear and polite sign telling passengers not to leave it there (it is a wheelchair space by law unlike on buses). On my most recent trip to London I had to complain about a member of the Virgin trains staff who said it was OK for passengers to leave large suitcases blocking both my emergency exit and my path to the loo despite a sign clearly saying this was prohibited!
“Assistance” staff standing about in stations who haven’t got the brains they were born with and don’t tell you that you need to go to a specific mobility point in that train station to get started on your journey when you approach one to ask.
Huge national stations with only one or two accessible toilets for the whole station (and thousands and thousands of passengers daily many of whom will need an accessible loo as not all disabilities use a wheelchair) and often with a smelly baby change inside that to boot… One I used today did not even lock while you went in as the RADAR lock was broken and the handle just fell straight back down into the unoccupied position leaving me feeling very wary. I was glad I had someone waiting right outside for me!
Many stations around the country that are simply not accessible at all and no plans to update them.
And then there are the general public: other passengers who go barging past while you wait patiently on the platform for the assistance man to appear (on the last minute as usual) with a ramp or for him to simply have the chance to lay it out only to then have to remove these bargers from the wheelchair space once you’ve finally been able to board. They barged by me, in some cases tripped over me or the ramp and then completely ignored the rather large sign telling them that I was going to need to be put there and yet it is somehow my fault (never theirs!) they have to go find another seat. And then there are the times you have to travel in the doorway because the train is quite full and people are not prepared to spend a couple of minutes shuffling about to let you through, so you risk your chair tipping and every time the train stops on that side people have to climb over you. Members of the public who lean on the handles of your wheelchair (which is for all intents and purposes an extension of the users body – see here for a good explanation) and risk tipping you out of the chair also drive me potty. I mean, would they lean on the bloke on the other side of them? Or a child? Or any other person at all? No. So why do you lean on me while standing on a train or in a lift? Stop it, it’s not acceptable behaviour and it’s dangerous as active wheelchairs are designed to tip backwards so we can go up kerbs this also is why the majority of our designated spaces place us with our backs against a barrier. While I’m bitching out people’s manners I’ll also call out those people who get in a lift on their own, can see I’m heading for it and suddenly seem to mysteriously “forget” how the lift works and so make a pretence at pressing lots of buttons but somehow never the one for holding the door open.
But on a cheerier note, for each one of these annoying stressful times there is the platform/assistance staff member who remembers your name and regular destination, the staff member who goes out of his way to help, the assistance staff member who is just so awesome at making sure you catch that connection even if he has to hold up the train, the staff member with the cheeky smile and a joke, the times you roll on to the platform and find the ramp is already down and waiting for you! The lovely stranger who goes to find a staff member to help you off the train at your destination or if necessary two kind and strong strangers who physically lift you on or off the train by themselves when you’re stuck.
The assistance staff who see you come in from their desk and come over to you to help or the regular staff at your local station who you get to know and who recognise you on their CCTV and come straight out. Members of the public who take the initiative and move out of the wheelchair space without being asked, coaxed or even needing to have the sign read to them as if they were aliens from Mars and who offer to help with my luggage.
So yes, you do have to have everything planned in advance like a military operation only better, but for every bad experience you can nearly always guarantee to have a good one to pair with it. As long as you don’t need the loo…