NOTE: The Fay Farm‘s CBD Rejuvenation Lotion was gifted to me as a member of Chronic Illness Bloggers free of charge in exchange for an honest, unbiased review. All views in this post are my own and I have in no way been influenced by the company.
I haven’t forayed into reviewing body products before but I jumped at the chance to be able to try it and to share this product with you all in partnership with the Chronic Illness Bloggers network. It’s very unusual and sounds absolutely perfect for many of us spoonie types.
Handily it arrived just in time for a bad episode health wise for me – the perfect time to put it to the test! Regular readers will know I was at home sick as I was in a lot of pain from my conditions and multiple dislocations. Continue reading
There are many times I feel like I could happily wish away my EDS, days when I’m in a lot of pain, having a lot of dislocations, or otherwise feeling very much under the weather as a result of its myriad symptoms.
When I think about it more deeply however I realise that without my EDS I would have grown up to be a totally different person! I have had many experiences and learned many things as a result of it that regular folks don’t have.
So, in no particular order, here are ten things EDS has taught me:
- There is always a way to do something! EDSers become very good at thinking outside the box in order to find a way to join in with an activity or get somewhere. If you want it badly enough, you will find a way.
- To treat my body with the respect it deserves. Rest is pro-active not time wasting! Over-doing it will only lead to a bigger crash later on, pacing is the best way of making sure everything gets done.
- I can be who I want to be. Just because I’m disabled doesn’t mean that’s the only label I can ever have.
- It’s OK to be different… Using a visible mobility aid or support and braces is a hard thing to get used to, people stare and ask awkward questions as they assume someone my age must have injured themselves – after all they couldn’t possibly be one of those “disableds”!
- …and that what other people think of you doesn’t really matter. In the grand scheme of things the only person whose opinion of yourself matters is your own. If you need that cane or wheelchair to help you get about it doesn’t matter what Mrs. Busybody thinks of you what really matters is how much more able you are as a result of using it and how much easier it is to manage your condition. The moment you stop judging other people and forget about other people judging you, you feel so much more free.
- I have a voice! And I mean literally not figuratively here. For me I was pretty used to standing out as a 6ft tall marfanoid woman so I had never had to speak loudly to be noticed. When I became a wheelchair user I had to discover an “out-door” voice that I’d never had before as many people seem indifferent to chair users.
- Never say never. I thought I would never go back to college or find a way to use my skills, now look at me! I’ve done the former and I’m doing my best at the latter.
- I’m stronger than I ever thought. I’ve been through so much! Operations, hospital stays, physiotherapy, all manner of tests, ongoing gastric problems, years of corrective therapy for my feet and yet I’m still here and still fighting.
- Who my real friends are. When you’re chronically ill you need your friends more than ever but they seem to magically fall away over the years. Many people just can’t deal with having a sick friend and stop calling or coming over. Your real friends will always be there for you, even at 3am in an emergency.
- How to prioritise. In order to get the best out of life I have to prioritise my activities and spread them out, I’ve learnt the hard way that I can’t do everything as much as I want to.
If you have a chronic illness, what things has it taught you?
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?
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.