Today is 1000 Voices for Compassion, where bloggers, writers, artists, or anyone, have been asked to create something on the subject of compassion. You will be able to see all the amazing content being released on the 1000 Voices blog or on twitter using the hashtag #1000Speaks.
The subject I have chosen to talk about is one that many people with chronic illness find difficult in some way, and that’s self-compassion.
Living with a disability can be really difficult for a whole myriad of reasons, but in truth, we are often the hardest on ourselves.
I frequently find there is a specific personality type amongst people living with painful and exhausting conditions. It’s ironically the opposite of the image pushed by the media of lazy, feckless people who can’t be bothered to do a day’s work. They are hard-working, creative people who push themselves to the limit. People who struggle to say no, to others, and to ourselves.
Saying no to myself is definitely something I struggle with personally, and so I have been working on trying to recognise the achievements I do make in a day, even if it’s something simple. Such as taking a shower when I felt like death. Or responding to an email. Anything I was able to do, no matter how I felt.
A few months ago I was at an Ehlers-Danlos Syndrome support group, and this topic came up. We were talking about achievements, and I shared my new mindset of trying to feel good about the little things, even if I only got a fraction of what I wanted to achieve done.
Then another lady spoke up and suggested I was looking at it in the wrong way. That I was still putting that level of achievement on doing something. She said to turn it around and say:
‘My achievement today was doing nothing, because that is what my body needed.’
The days of being stuck in bed, or lying on a sofa are the hardest. Every cell in my body is rallying against it – telling me I need to be doing something. At my harshest I feel worthless if I’ve done nothing. But we have to listen to our bodies, and have to rest in order to function at other times. To continue to fight against it is to battle against ourselves and what we need physically. It just leads to more pain, and more fatigue – and more feelings of worthlessness as we putting the pressure on ourselves to perform. No one else.
It was quite the lightbulb moment for me, and made me realise she was right, it was a much healthier way of looking at it.
It’s often easier to step back from the situation and think what you’d tell someone else in the same position. If your friend told you she’d had a terrible day health-wise, and they felt like a useless piece of crap because they’d spent the day in bed, would you agree with her? Or would you empathise with their feelings, but point out they did the right thing by not fighting against how they felt, so they could rest up and hopefully have a better day soon. And that some days (or a lot of days!) spent sleeping, or reading, or on Facebook is absolutely fine, and doesn’t negate their worth in society?
Self-compassion is a crucial aspect of living with daily pain. I can think of so many people full of compassion for others who find it hard to turn it back on themselves. We need to become our own advocate – both to others, and to ourselves.
How do you use compassion or self-compassion in your life? All comments appreciated!
Credit to Kurhan
Yesterday I went to London to see Dr Hakim, one of the top specialists in Britain for Ehlers-Danlos Syndrome.
I was nervous when I got there – I always am before I see a consultant, due to many, many bad experiences. However he immediately put me at ease, and was a nice, approachable person.
I’d made a list of problems I wanted to talk about, and he made a note of them and went through each in turn giving me ideas and suggestions of particular treatments or medications I could try.
He said in terms of exercise I was doing everything right, and everything I could. This meant a lot, as I’ve had medical professionals be so judgmental with no understanding of how hard it is to do the ‘little’ I do without putting myself in bed for weeks. I told him what one Pain Consultant had said – that I should be exercising six times a day. He said it was such an easy thing to say, and proved how little he knows.
We spoke about my Physiotherapist Leon Stephens at Sudbury Physiotherapy Centre who specialises in Hypermobility, and has been great, and Dr Hakim knew of him, which was good.
At some point this year I need to renew my Employment and Support Allowance, and in the next couple of years my indefinite Disability Living Allowance award will be changed over to the replacement – Personal Independence Payment (PIP). I’m terrified about both of these, as are most disabled people in the country who currently rely on them – or may need them in the future – to survive. I never know how people may react to something like that, due all the ‘scroungers’ rhetoric in the media, that has been picked up by so many.
Since I received my diagnosis letter in 2011 – I haven’t had a decent letter from a consultant that I could use as medical evidence. I’ve seen lots of consultants, but letters are generally of the “Treatment x didn’t work, been discharged” variety which won’t help much in terms of summarising where I’m currently at on the whole. I feared the lack of letters may go against me, as the Department of Work and Pensions will argue I can’t be that bad if I don’t see a consultant regularly.
Dr Hakim was very understanding of this, and we spoke at length about the PIP changeover, and he knew how hard it was on his patients. He said it’s obvious the reason I don’t have new evidence is because I’m doing the best I can at home to manage, but he would write an updated version for me to keep on file for when I need this.
This will take a huge worry away from me, so I’m thrilled.
He recommended that I take a multivitamin daily – he mentioned the Well Woman one, to make sure I’m topping up on anything that could be contributing to my levels of fatigue. He’s also going to ask my GP to check every blood test has been done, including the T3 Thyroid test that the NHS often miss out. He also suggested getting some Melatonin from the US, as well as suggesting some other sleep and pain medications I have yet to try that he’s going to suggest to my GP to look into (I can’t remember the name of them currently!) He also recommended some consultations in other fields that I could see if I continue to get nowhere locally.
He also suggested that anyone with POTs or autonomic dysfunction (including sleep problems) to drink an Isotonic drink called Nuun. He explained that they tell people like us to keep hydrated, so we drink water – but it actually make things worse as it dilutes the salt in our blood, so our kidneys then filter it and we pass it out with urine leaving things actually worse. (Or something like that!)
So he suggested drinking a salt isotonic drink which means that we are really hydrated, as drinking liquid with a similar salt content as our blood means it will do its job, rather than being filtered and disposed of straight away. Most of the similar products on the market i.e. sports drinks, Lucozade, etc are full of crap and sugar, so he suggests Nuun as it doesn’t add much else, just some flavouring. He suggested at a minimum to drink one before bed, and one as soon as you wake up, and this should stabilise some of those issues.
They are pretty expensive, but we only need half a tablet at a time, as the whole tablets are designed for athletes.
We also spoke about Prolotherapy, which is a new therapy I’m hearing a lot about recently, mostly from Americans, and I was interested in his thoughts. He said there was no evidence for it, and some of his patients had been made worse by it.
I found Dr Hakim very understanding, kind and obviously knowledgeable. All in all it was a great appointment – and when his letter arrives I will add anything helpful I’ve forgotten!
Professor Grahame retired from NHS patients some time ago, and is no longer taking on new private patients. I believe he may still have a private clinic for under 16s, but Dr Hakim is a perfect alternative.
First of all sincere apologies for the lack of updates lately. It’s been such a busy time, that writing has fallen by the way-side a little.
I just thought I’d give you a small update about what I’ve been up to lately.
I recently wrote about the process of obtaining a Personal Budget to employ a Personal Assistant. I’ve had that in place a couple of months now, and it’s been brilliant. She’s been able to help with a range of things, from the obvious helping with care, but also driving me to appointments, getting my wheelchair out, cooking, sorting out areas I haven’t been well enough to do in my home, etc. It’s taken quite a bit of stress out of my life and I’d recommend it to anyone.
Medically I’m still very much in no-man’s land. The Pain Clinic have declared me incurable and untreatable, and discharged me. Apparently they only help people who will get better, they’re not interested in actually managing pain. My specialist consultants also are no longer able to keep me on their books due to over-subscription, so I’m consultant-less. It’s quite a scary place to be.
My GP has been trying to help with this situation, and wrote to a local Rheumatologist who lists himself as a connective tissue specialist on the hospital website. He rejected my referral, and wrote back saying, “I have no interest in managing Ehlers-Danlos Syndrome.” Although he did refer me to a Hypermobility Specialist Physiotherapist instead. Silly, silly me actually got my hopes up and thought she might be interested in working with me to move forward. Instead without any examination she declared there was nothing she could do, so I’d have my final batch of Hydrotherapy and that would be it. She then spent the rest of the session basically telling me I should be perfectly okay in the mornings, as other people with the condition manage. I tried to explain I have severe insomnia and sleep issues, and am a total mess in the mornings, but she wasn’t interested.
I then finished my final block of Hydrotherapy, which I really enjoyed. I do find the warmth means I can do much more than out of water. I would love this on a rolling-basis, and will keep trying to pester the hospital to make this happen.
I’ve also just had a sleep study done, but I’m waiting for the results. It was a machine I had to take home, that strapped to my stomach and chest, a tube went up the nose (nice!), a mask for your mouth and finally a clip for your finger. They have to rule out Sleep Apnoea before they’ll send you to a sleep consultant, but I am a little worried they’ll tell me it’s not Sleep Apnoea, and then not let me see anyone at all. Hopefully I’ll get the results soon, and this long-term issue is explored.
I have been lucky enough to find a private physiotherapist, however, that has an interest in Ehlers-Danlos Syndrome – and he genuinely does. It’s a lot of money, but the only treatment I’m now getting. He hasn’t promised he will be able to help me, but he’s going to try. If I can even maintain what little mobility I have, that would be a start. I’m diligently doing all the exercises he’s giving me (not a hurriedly printed out sheet, but thoughtfully targeting specific issues) and he’s easy to contact if things go wrong to provide advice, and alternative exercises. He really seems to know his stuff, so that’s been great.
I also recently took part in a study on Ehlers-Danlos Syndrome that’s all about what triggers the condition in the first place (obviously it’s genetic, but there is often an occurrence in your life that makes it much worse, often puberty, having children, an accident or something else. Others just have it severely from birth, so it’s exploring all of that.) The research also looks at flare-ups and the triggers.
The research sounds really interesting, and when it’s published it will obviously go into medical journals, but particularly GP and physiotherapist journals, to catch front-line staff.
One thing I truly believe is that the fight for decent rates of diagnosis lays almost entirely with GPs and Physiotherapists. They’re the ones that have to see signs, and see past one problem joint, or a history of chronic pain without a solid diagnosis and make a referral to a specialist. Once they have that awareness, only then can diagnosis rates climb.
I’m also preparing for Christmas, and this year have decided to have my first ever real Christmas Tree! I’ve also been making festive bunting with the help from my Personal Assistant, and it’s the first year in a really long time I’ve been genuinely excited for Christmas!
Please comment below to tell me your news, and whether you’re looking forward to Christmas or not?
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos Syndrome is a connective tissue disease, caused by faulty collagen. Collagen is the ‘glue’ of your body and is part of your skin, organs, ligaments, tendons and much more. The condition is multi-systemic, which means it impacts almost all of the body in some way, including the heart, lungs, auto-immune system, gastrointestinal tract, eyes and in lots of different ways that are too numerous to mention. There are different types of the condition, which range from highly disabling, to some types which are even fatal.
The most common type of Ehlers-Danlos Syndrome is Hypermobility type. This is because the most prominent sign is the Hypermobile joints – colloquially known as being ‘double-jointed’. This can occur in any joint, and means the ligaments and tendons aren’t holding the joints in place as they should, and allows the joints to over-extend. This causes damage in the connective tissues surrounding the joints. Joints can also dislocate, or semi-dislocate (subluxate) which is very painful.
As the connective tissue isn’t doing its job, the muscles take over. This means they’re usually tight and in spasm, and overwork which causes additional fatigue.
The condition is genetic and two-thirds of sufferers inherit it from one of their parents. One third get it through a genetic mutation.
How does it impact me on a day-to-day basis?
While I was born with it, the symptoms throughout childhood seemed random, so no one ever realised there was an underlying condition. I had lots of bouts of pain throughout my childhood that doctors dismissed as growing pains, and often my legs or ankles would give way and I’d fall to floor for no reason. My healing was poor and left scars easily. Simple tasks like tying my shoelaces were difficult, I struggled to write for long periods, and my handwriting was awful.
At the age of 15 my pain became constant. I now know this is a very common time to trigger the condition more seriously, but it took almost nine years before a consultant finally stopped shrugging their shoulders at me, and put a name to my condition. For all those years – the years most people are growing up, and having a life – I was getting home from college, or university and collapsing in bed, and spending all my money on alternative therapies to try and get some relief as the doctors couldn’t offer any help.
I have never had a pain-free day for almost twelve years. It’s unrelenting, and even worse is unpredictable. One day I could be limping from my left leg and unable to move my arm, and the next day they’ll be fine but my hip feels like it’s on fire and my neck is locked in place. This is makes it difficult to know what I’ll be able to do that day – and how much help I’ll need.
The condition impacts the auto-immune system and produces too much adrenaline, so I sleep really badly, and have insomnia. The fatigue is crippling, and I often have to spend all day in bed, or unable to function. Often just being able to do a simple task like have a shower, or get dressed is an achievement and all I’ll be able to do that day.
To be able to do something else – like go to a friend’s house, have a meal out or even worse – attend an all-day event is a bit of a nightmare, and involve lots of planning. For days in advance I’d need to rest to conserve my energy, then on the day take every painkiller available, and use every bit of my strength to get through it. Recovery will usually take weeks.
My hypermobile joints are particularly bad in my spine, and so I’ve developed bulging discs, arthritis, degenerative lumbar disease, scoliosis and cysts on my spine due to the over-extension there. As a result my mobility is impacted, and I can only walk with extreme pain, and so use an electric wheelchair.
Why is awareness so important?
The diagnosis rates of the condition are really poor. The average time of diagnosis for sufferers is over ten years, but for many it’s much longer, and some even live their whole lives without knowing what’s wrong with them. Many are also misdiagnosed with other conditions, or told it’s all in their heads. Ehlers-Danlos Syndrome is estimated to affect one in 5000 people in the UK, however according to a recent study, around 95% of cases go undiagnosed or misdiagnosed every year, meaning this figure is in reality much higher.
EDS is treated terribly by the medical community. I wrote a little more about this topic in Rare Disease Day and Ehlers-Danlos Syndrome. In general most doctors spend a few minutes covering the condition in their studies, and so don’t recognise it when they come across patients who are looking for answers. It’s also highly neglected in terms of research, care, NHS services and provision of medical expertise. There are only a couple of specialists in the whole of the UK for the condition, which are usually oversubscribed due to the demand.
There are some quite simple ways of looking out for the condition, so we need to get the word out to front-line medical staff – GPs, nurses, physiotherapists – as well as members of the community, so they can spot the signs as early as possible, and get help for people before they have to live years in pain without understanding why.
If you recognise any of the symptoms mentioned above in yourself, your child or someone you know – particularly hypermobile joints, long-term chronic pain and other unexplained symptoms – please seek further medical advice, and request to see a specialist as soon as possible.
The Awareness Ribbon for EDS features a Zebra Print. This is from the phrase taught in medical schools – “When you hear hoofbeats, think horses, not zebras.” This means when presented with a set of symptoms – the most obvious answer is usually a common condition.
EDS adopted the zebra to say – hey, rare conditions exist too!
Let’s start with a fundamental truth: having a chronic illness sucks. There’s no denying that.
However, looking at the people I know who live with a variety of long-term conditions, a lot of them have developed certain skills that can help them.
When you have a chronic illness, your body often fails you. You frequently have to stop doing normal everyday tasks, activities and hobbies that you once enjoyed. Your illness can change on a daily basis, or even multiple times within an hour making it very difficult to plan anything in advance.
Resilience is defined as the “ability to spring back into shape and recover quickly from difficulties.” It’s something those of us with chronic illness have to do every day. Any day can bring a new symptom, a flare up or even a new diagnosis. We have to learn to live with that, and deal with our new circumstances, whatever that may be.
We’ve been dealt a certain hand of cards, and we can’t give up or take a break from it – we just have to keep fighting.
Strength is a fundamental facet of chronic illness. The strength to drag ourselves out of bed even when every cell in our body is screaming ‘what the hell are you doing?’ Or strength to put a happy face on when you’re meeting friends, or going to a family function. It takes a lot of strength to keep going, no matter how bad things get.
But there’s also the strength needed to advocate for ourselves – because even if you’re fortunate enough to have supportive family or friends, you know your body best and you will have to fight for what you need, often over and over, and have to be brave enough to ask for help when enough is enough.
Having a health condition means we need to become an expert in lots of different areas. Whether it’s our condition, treatment, benefits/welfare, how to obtain assistance, relevant laws and much more – we have to know it all! We’ve constantly got a new battle on our hands, as it’s rare help gets handed to us on a plate.
And having a rare condition brings added pressure, as we’re often also having to educate our doctors and medical professionals in what exactly our condition is in the first place (while trying not to annoy them!) before we’re even able to get onto treatment and management options.
Knowledge is vital for us to understand our own circumstances, and can also be very empowering.
Having health issues tends to open your eyes a lot more to other people’s struggles in a way you may not have even thought about previously. Compassion for other people comes more readily when you can relate to them due to your own experiences. Empathy is defined as, “The ability to understand and share the feelings of another.”
Chronic illness can cause an amalgamation of issues that aren’t just medically related, and it can make it easier to have an insight when other people experience their own difficulties.
In my own personal experience, I find when I mention I’m having a bad day, or share a fundraiser for a local charity – it’s my friends who have their own health issues who are the first to respond offering support.
Creativity comes in lots of different forms, from the traditional arts and crafts type, to the way you live your life. Through my own conditions I’ve tried to embrace my inner craft goddess, and discovered so many other people with disabilities also take part in similar pursuits. Perhaps because it’s a great way to distract yourself from pain, and also because enabling yourself to create something to be proud of brings a positive element to your life.
But creativity isn’t all glitter and glue – it’s also having to be creative with our own lives. You have to learn to think outside the box, find ways around issues and constantly problem-solve. The ways we used to do something may not now apply to us, such as hopping on a bus to go shopping. We may have to use our imaginations to devise easier and shorter routes, alternatives to carrying heavy items, and keep the trips out short and sweet to manage fatigue and pain. Instead of saying “I can’t do that” it becomes “How can I find a way to do that?”
If you know somone with chronic illness is having a bad day, why don’t you share this with them to give them a boost?
What would you add to this list? Please comment below with some of the skills you’ve gained, or skills that you see your friends/loved ones using.