How to Support Your Friend and Loved One With a Chronic Illness

How to Support Your Friend and Loved One With a Chronic Illness

Before I start this post I want to thank you from the bottom of my heart.

Thank you for creating time and spaciousness in your day to read this post with a selection of ways you can support your friend or loved one with a chronic illness.

You’re either here because you’re a friend or loved one to me, Georgie, or, you’re here to educate yourself on compassionate actionable ways to learn how to best support your own friend or loved one.

Whatever the reason that you are here, I am truly endlessly appreciating you for wanting to be the love in the room for your friend and loved one.

Your choice to be here and receive these words means so very much. I don’t take your time or heart lightly. It truly is such a gift to me and others that live with chronic illnesses.

The other reason this means so much to me is that today is World Scleroderma Day (the date of the 29th June marks the death of the artist Paul Klee who passed away from Scleroderma in 1940) and in the midst of a series of ongoing flares, this has meant that physically and emotionally I’ve been unable to show up for this all-important awareness month as I have done since my diagnosis in 2018.

I need you all more than ever, and your chronic illness friends and loved ones need you more than ever too. If there is even just one thing you’re able to action from this post it will create a ripple effect that will transform the lives of those you love and beyond. Thank you so deeply once again for being with me here.

What is a Chronic Illness?

Before I share more about Scleroderma and this all important awareness month let me first break down what a chronic illness actually is.

The definition of a chronic illness is a “disease that is persistent or otherwise long-lasting in its effects”

But even without that description, the name says it all — chronic Illness.

The chronic nature of these illnesses means that day in, and day out, we are faced with an ongoing battle that never ends.

Unlike other sicknesses, there is no end in sight. So, unless you hold out for a miracle or a new cure, these chronic illnesses will follow us in some way, shape, or form for the rest of our life.

Interestingly, the earliest origins of the words ‘chronic’, then known as ‘cronik’ in English, have always been linked to diseases that translated to “lasting a long time.”

In other languages, we can see it in old French words such as “chronique” and directly from the Latin word “chronicus”, from Greek “khronikos” that also illustrate that throughout time this word has had an association with the concerning of time and disease.

To illustrate this sense of chronic-ness for those looking in from the outside, think of a time when you have had a cold or the flu and how that made you feel. Or imagine an injury you have had and the pain you experienced with it. How did you feel? Would you have done anything to make it stop? Did you look forward to the day when you would start to feel better again?

Can you now imagine the above for 365 days a year, every year, and 24/7? Because this is the reality of chronic illness. It feels like you’re carrying a heavyweight which nobody can see but you.

It hurts, it’s exhausting, you’re consumed with ongoing grief and you feel constantly burdensome. And I live with 6 of these chronic illnesses (today I’d like to focus on Scleroderma due to the period of awareness however other posts on these other illnesses can be found here).

World Scleroderma Day – 29th June

June is Scleroderma Awareness Month with the 29th June marking World Scleroderma Day. You can head to the Scleroderma registered charity SRUK to find out more about this right here.

However, each and every single day, however, is important for all of us suffering from Scleroderma.

We are always fighting for our voices to be heard and to raise awareness for all of the illnesses, visible and invisible.

This June I have been unable to create any new posts due to being in the midst of a severe skin flare. As a result, I am truly passionately calling on anyone to read this to help in any way they can.

raynauds hands

WHAT IS SCLERODERMA?

Scleroderma, is a rare, chronic disease of the immune system, blood vessels & connective tissue and affects 2.5 million people worldwide with sadly no cure.

There are a few variations of Scleroderma. These include: Localised SclerodermaLimited Scleroderma and Diffuse Scleroderma.

I have limited systemic sclerosis meaning that the excess of collagen causes scarring and stops the affected parts of the body such as the heart, oesophagus, blood vessels, kidneys, lungs, blood pressure and digestive system from functioning normally. You can read all about my journey with my symptoms and my diagnosis here.

Currently, it’s estimated that 2.5 million people are living worldwide with Scleroderma, including 19,000 in the UK, with 1,300 being diagnosed every year.

This month, SRUK is calling on people to #KnowScleroderma better in a bid to both help people with the symptoms find the resources they need, and help friends and family support those that are suffering from this truly cruel disease. 

This video illustrates Scleroderma in an easily absorbed way:

a photo of raynauds disease

12 Ways to Support Your Friend and Loved One With a Chronic Illness

This post idea came to me in desperation as I have been unable to find a break in my flares to add any new post ideas to the all-important discussion of Scleroderma awareness in June.

This list of ideas for friends and loved ones is by no means complete, however, these are the things that I secretly wish to experience more in my life.

(To anyone with a chronic illness who may be reading this, is there anything else you would add to the list above? Please let me know in the comments and I can add it in.)

Again: Thank you so, so, so much again for reading and taking any action that is possible for you. There are many of you reading this who know me intimately and do all of these things and more. Wherever possible, please lead others with your dedication to love in action.

1. Take care of yourself

There’s not really an order to these supportive suggestions that came to me, however as I was editing the post, I truly wanted to highlight the importance of bathing yourself in your OWN self-love, self-compassion, and self-care. Because like the friend or loved one you’re supporting, you’re also a precious once-in-a-lifetime miracle. 

The notion of self-care and self-love completely eludes so many, and yet taking the time to come back home to ourselves is truly the greatest gift we could all give ourselves.

Most importantly, it is only when you have focussed on taking care of yourself in a healthy way that you can then share the bounty of your self-love and self-care in a healthy way with your chronically ill friend or loved one.

Yes, at this point we can also definitely talk about privilege, but I personally believe that more than ever we are deeply overwhelmed and bombarded with so many different expressions of suffering in any given day. As a result, this is a lot to hold and it can lead to people feeling they’re unable to offer anything at all.

I would personally rather my friends and loved ones came from a place where their cups were full and nourished and coming from their true ability to give.

Because your friend or loved one with a chronic illness like me, might feel like a constant burden so truthfully, we need those that can give from a healthy place rather than an obligation or their own guilt. And we need you so, so, so much.

So with all my heart, I want my loved ones and friends to completely bathe themselves in self-care because otherwise none of the rest of the points below can be actionable when you don’t deeply look after yourself first and foremost.

Another reason why this means so much to me is that I cannot fathom what it must be like to have a body that’s not in constant turmoil. If you know good health, you are the luckiest person in the whole entire world. You hold the greatest treasure. Please, please cherish that and have deep reverence for your health.

2. Research your friend’s conditions so your actions can support this when you are with your friend/loved one

In 2018, when I came out of an appointment that was the diagnosis of my Scleroderma, I was so numb and so empty that I went home, curled into bed, and trawled Google for hours. I couldn’t speak to anyone properly for weeks and I only had the mental energy to copy and paste the same message to many to explain what was going on. After all, I hadn’t even come to terms with it myself.

When my friends and loved ones mentioned that they had researched my condition in the midst of this it truly made my heart melt. These are the relationships that I’m truly so, so grateful for.

I understand that some of these conditions with these unfamiliar names can seem alienating, however, as time goes on, I honestly find it deeply exhausting and retraumatising to explain everything in detail. So, those who do their own research for the most part and then ask for clarification are my greatest gifts.

Even just sharing details above about what Scleroderma is, is very traumatising, as well as this whole awareness month. Truthfully, I have always felt that my dharma is helping people and holding space for the unimaginable, but these past few years have tested my ability to constantly be sharing about my own lived experience so vulnerably.

So, I would beg of those that want to help to please read up on the condition and tell other friends or family members about it. The more people that know, the more research that gets done (and we’ve seen the great blessing this research can birth during this pandemic).

Moreover, once people have taken the time to research my illness, it also gives the great gift of being able to understand what my basic needs are so I don’t have to always feel like a burden for not being able to do certain things.

Basic-needs with Scleroderma can include the following (but are not limited to just this list):

  1. I’m always cold and have severe Raynauds disease (see photo two above) so this means that I cannot get too cold or I can faint or have other complications. This means that in cooler weather I’m unable to sit outside/be outside for too long.
  2. Due to severe Gastroparesis (a common relative to Scleroderma) I am unable to eat much and follow diets such as the low-fodmap diet in order to manage this symptom. I beg of people to please, please, please, please don’t comment on how little I eat and bear this in mind if we eat together. I am physically unable to gain any more weight than I already have so this is a deeply sensitive topic when people comment on this. These words burn in my soul.
  3. I get severely fatigued so my energy is severely different from those without chronic illnesses. There are so many instances of how this impacts my life so please understand that I need hours and hours of rest in the day. I have finally come to peace with resting deeply but it’s still traumatising to hear words such as ‘lazy’ and ‘weak’ in association with this symptom.
  4. I have severe pain in my hands so I can’t open things well or hold things. My hands ache from the moment I wake up to the moment I go to bed. Sometimes this makes me clumsy. People who offer to carry things for me mean the absolute world.
  5. As well as Scleroderma I have other chronic illnesses that give me problems with vertigo (so I am regularly light-headed and can faint).

3. Actively help and show up to raise awareness

To save this section from getting too long I have left a small list of ways you can help me to raise awareness of Scleroderma not just in June, but all year long.

In fact, I’d argue autumn and winter is an integral time for raising awareness due to Raynaud’s problems being even more noticeable and severe.

You have the ability to save someone’s life if you notice one of the symptoms in someone you love.

4. Be understanding and listen

“In order to emphasize with someone’s experience, you must be willing to believe them as you see it, and not how you imagine their experience to be”

Brene Brown

I think that truly listening (to understand), being a witness to each other, and holding space will continue to change the world.

Despite what’s going on with my conditions, I always want to hold space for pain, fear, and hope in others in the best ways I can. And I so long for others to do the same for me and these illnesses I am carrying.

Being understanding and listening are the greatest gift you could give to your friend with a chronic illness.

Thankfully, whilst yes, I personally I can thrive on silence, solitude, and aloneness more than most, I am no stranger to soul-deep loneliness. I long more than anything in the world to be seen, heard, and held in my humanness as we all do.

Profound loneliness and feeling constantly misunderstood are two of the most painful parts of living with a chronic illness for me.

Tragically, growing up, this sense of alienation has always felt more pronounced with my peers who I find get uncomfortable holding space for chronic illness because it reminds them that we aren’t infallible and immortal.

The older I get, and the more isolating this becomes (I have a detailed post on losing relationships due to chronic illness here) however I am slowly learning to accept that if people can’t hold space for me dealing with a chronic illness, then I can’t rely on them to hold space for me with other difficult things.

Ultimately, what this experience has taught me is how I wish people would understand how hard it is to feel loved while being pressured to be something you’re not. It feels so hard to encapsulate in words, but that’s how I feel living with these illnesses.

One of the most uncomfortable portals of self-discovery for me has been learning to heal from feeling abandoned when I have come to realise that people can often love or admire a version of you in their head that isn’t the living, breathing, hurting, real you.

So, if you are unable to witness, understand and listen to your friend or loved one in their current reality than please, please step away and don’t break our hearts.

5. Don’t try to heal them/ fix them

This is such a huge topic and personally, I believe as someone living with multiple chronic illnesses that I am allowed to wish for a future where there could be a cure for my illness. Especially as I have forever been deeply imaginative and idealistic with child-like optimism. It’s just my nature to see the world and all things in it through rose-coloured glasses.

And yet, I have tried and tried and tried to will myself back to health to no avail.

I spend every single day of my life doing this. I’m also bombarded with everyone commenting on what I should do/take and yet they haven’t experienced what it’s like to be in this body of mine.

Ultimately, all your chronically ill loved one wants for those around me is for my pain to be held when they need it. Not to be fixed. Because they are not broken.

Having said this, wellness, ironically, has always been a huge interest for me. I passionately use natural therapies and various modalities of healing practices alongside my medication. And if my intuition and soul calls for something more then I will seek the wisdom where I can find it.

If I approach you with a curiosity to try something new pertaining to natural therapies and remedies then it’s perfectly fine to open this portal of discussion up.

Ultimately, I take sacred stewardship over my vessel and look for new ways to tend to it, and look after it every day. 

These days, I just long for the day to bring all that is needed for me to be of service and for me to extend love. So that’s what I crave help with the most from my friend and loved ones.

Meanwhile, my body relays information and quiet awareness of how to care of myself. And that’s my daily compass.

6. Ask how they are and regularly check-in

As a chronically ill person, there’s often social pressure to ‘perform wellness’ even when I’m in the midst of another sinister flare (I have a detailed post on losing relationships due to chronic illness here).

As a result, whilst answers to questions such as “how are you” might read “I’m fine” on paper I’m definitely not fine. I also need to be able to be more comfortable in my vulnerability, but as I tread this path, it takes immense courage to trust people will still want to be in my life.

Please don’t always feel that you have to be able to find the right words. It’s far better to check in than to give up on us and abandon us altogether.

You can just ask if we’re okay, if there’s something you can do to help, or just sit and be with us if you are able to.

Some days we might just want distractions, some days we might want a soothing cuddle, and other days we might just want someone to sit with us in our pain.

If I am needing to be held in my brokenness, I always check to see if you’re currently able to hold this. If you can’t I truly don’t mind because I always want you to be nourishing point 1 of this post.

However, if you are able to hold space, please don’t try to change the subject if we do decide we want to talk about our sadness or our concerns about our health, and you have expressed you are actually able to hold space. A willingness to meet this sort of vulnerability takes a colossal amount of courage.

In all ways, just simply be there for your chronically ill loved one and show you’re thinking of them. Because most days it can feel like no one truly cares.

Where we are able to be there for someone, it is imperative that we not shy away, that we not let each other down. 

7. Believe Us: Don’t pity/judge/shame them/think they are chasing attention

All we need is your support, love and understanding. And for you to believe us. What we absolutely don’t need is judgement, pity and shame.

I have experienced multiple levels of judgement, pity and shame growing up with chronic illness. And what I know so deeply to be true is that narratives that create shame, poison relationships, and the self, and cause lasting harm can sometimes be eternal.

Over the years I realise that my internal mind has converted the shame and judgment that has been projected onto me into perfectionism. So I find it extremely hard not to allow myself to rest and nothing I attempt ever feels good enough.

Ultimately the cruel exchange of not validating our lived experience creates indescribable pain on top of everything we already battle with. And in my weakest moments, often when I am in the most pain, I have to work extra hard to allow myself to not wallow in the wounds of all the times my illness has not been validated.

Examples of shame and judgment have been revealed in people pulling apart or scrutinizing my methods of healing, situations where people have called me ‘lazy’ when I battle debilitating fatigue, times when I was told I was being ‘overly dramatic’. And so it goes on.

Over time, I’ve trained my tender heart and mind to release the need for outside approval as a prerequisite for my own wellbeing. However, trying to live a profound, balanced life under the weight of that sense of shame has been the hardest thing for me to deal with.

8. Give us time/ be flexible and patient

When you live with a chronic illness uncertainty becomes tethered to your existence. I never know what the day will bring and therefore this makes it hard to plan.

However, this is just how chronic illness and pain works. So my final point is a call for patience, time and flexibility with your loved ones living with chronic illness.

I may not able to be part of your big celebrations, or well on the day for that Zoom call we had planned. Although with all my heart, whenever I know I have something planned with someone I love, I make sure to top up my self-care by a million more per-cent. So, my longing to be with you is always immense.

To you reading this once more: I see you and I love you all for your patience. For not only making it to this last point (!) but also for wanting to take time to learn how to cultivate patience, faith, love and grace for those you love and cherish. You’re a gift to the world and beyond.

raynauds disease

HOW YOU CAN HELP SUPPORT ME DURING SCLERODERMA MONTH AND BEYOND

To accept that modern medicine cannot restore you and that there is no cure is an ongoing grieving process. It can also be exhausting to raise awareness for chronic illnesses.

In May of this year, I wrote a post really leaning in the depth of my vulnerability to share the effect living with Scleroderma, and other illnesses, has on my mental health. You can read this post here.

Any help you can lend to me and other Scleroderma sufferers this month means more than words can express.

So how can you help this very important day? Here are some ways:

  1. Firstly, it would mean so much if you could share this post you’re reading or any of the posts from my Scleroderma series you can find below. This small gesture is so powerful.

2. Beyond this, this post contains all the symptoms I had before I had my Scleroderma diagnosis. Do you recognise any of these in either yourself or your loved ones? If so please help yourself or others by directing them to help.

3. Are you able to share information about Scleroderma to your social media? Please use your platforms to reach as many people as possible.

4. Are you able to deliver leaflets about Scleroderma in your local area? This can include hospitals, GP surgeries, schools, colleges, the workplace etc. Find ways to seek awareness material here.

5. Are you able to make a donation to SRUK? Or if not, do you know someone who can?

6. You can also help me by supporting my Depop shop. All money raised from items sold here is sent to SRUK. The link is right here and I update it as often as possible.

Finally: Thank you. Just so, so much. Thank you for taking the time to read this and engage in any way you can.

I sincerely love each and every one of you so very much and your constant love and support here is the strength that I will use to create impossible things. 

READ MY SCLERODERMA BLOG POSTS HERE

HEAD TO SRUK HERE

Pin Me For Later…..

Share and Enjoy !

Shares
8
Answering your FAQs about Scleroderma: Everything you wanted to know about my life living with Scleroderma

Answering your FAQs about Scleroderma: Everything you wanted to know about my life living with Scleroderma

Today I’m answering your FAQs about Scleroderma that some of you have sent me via Twitter and Instagram. Hopefully, this post will give you everything you wanted to know about my life with Scleroderma. If you have any additional questions, please don’t hesitate to leave them in the comments and I will include them in part 2.

This post marks Scleroderma Awareness Month every June. However, each and every single day is important for each and every one of us suffering from this condition.

As Scleroderma sufferers, we are always fighting for our voices to be heard, to raise awareness for all of the illnesses, visible and invisible. But every June, we fight even harder to have our voices heard to reach those who are suffering from Scleroderma.

Know that nothing is more important than you getting all the help, answers and support you so deserve and I really hope this post can help serve you in this way.

What is Scleroderma?

Scleroderma is a very rare, chronic disease of the immune system, blood vessels and connective tissue that affects up to 2.5 million people worldwide including about 19,000 in the UK.

Whilst Scleroderma is a horrible life-changing disease, but it’s also a disease in which no two cases of Scleroderma are ever the same. There are mild cases and then there are life-threatening cases.

Like Lupus and similar, Scleroderma is an autoimmune condition, meaning that the immune system becomes overactive and starts to attack healthy tissue in the body.

The hallmark of Scleroderma is the excess of collagen that Scleroderma creates starts to affect the skin, joints, tendons and internal organs and can cause scarring, by stopping the affected parts of the body from functioning normally. 

There are several different types of Scleroderma and I discuss these differences here: ‘Early Symptoms of Scleroderma and how I was diagnosed’.

What were your symptoms of Scleroderma?

In terms of Scleroderma symptoms, looking back, my own experience with Raynaud’s, one of the key symptoms, started as early as my childhood.

I am an incredibly rare case where I have always had Raynaud’s and this then turned to Secondary Raynaud’s overtime (it is far more common to have primary Raynaud’s). For more resources on Raynaud’s I have a section devoted to this symptom here.

However the Raynaud’s became more severe in my 20s whilst I was also suffering a myriad of other puzzling conditions like carpal tunnel syndrome, fainting spells, loss of appetite, severe acid reflux, nausea, dizziness, chronic nose bleeds and aching joints. They are the symptoms I can remember!

It was this act of joining the jigsaw pieces together that resulted in me finally receiving help when I was receiving injections for carpal tunnel syndrome and my specialist asked if anyone had looked into my Raynaud’s Phenomenon more deeply. Because I hadn’t, he referred me to a rheumatologist.

I was officially diagnosed with Scleroderma in 2018 however I believe I had been suffering with it for most of my 20s.

For more information on my early symptoms head to this blog post: ‘Early Symptoms of Scleroderma and how I was diagnosed’.

What can I do if I feel my doctor isn’t listening to me?

I so deeply understand the pain of doctors ignoring our symptoms and send you all my love and deepest understanding.

Like every undiagnosed, chronically ill person reading this knows only too well, suffering in such a way is not just physically draining, but also emotionally unbearable.

If you read this post ‘Early Symptoms of Scleroderma and how I was diagnosed’ and identified with some of the symptoms I would highly suggest going to SRUK and taking some of these resources along to your next appointment.

Please don’t give up searching for the help you need. It might take several doctors to truly listen to you you, but your story and your symptoms are worthy. And so are you. So, so worthy. Please don’t ever give up.

What exercise is best for Scleroderma?

I must confess exercise is one of my least favourite things in the world….! I even have to force myself to do things like Pilates and Yoga that in spirit I love….just not the actual exercise part!

So, despite the above, I would actually highly recommend Pilates and Yoga. I cannot escape the fact I do feel better afterwards.

However, if I had to pick one form of exercise I truly enjoy it would be swimming. Because of my condition, I need to find a heated swimming pool. It’s worth hunting one down if you can. I find the benefits to be wonderful.

Otherwise, short walks for me are a different kind of therapy.

Part the problem of exercising for me is being cold and my painful joints and lungs. I would definitely start with Pilates, Yoga, Tai-Chi and swimming to see how you get on.

I discuss more options in this blog post here: ‘Natural Therapies for Scleroderma’.

Are there certain foods and/or drink that I should avoid in order to reduce my reflux and heartburn?

The gut is affected in up to 90% of patients with systemic sclerosis, the type of Scleroderma that I have, so awareness of nutrition is particularly important if you have this form of the condition like me.

The technical name for the gastrointestinal symptoms that occur in Scleroderma is called Gastroesophageal Reflux Disease, (GERD/GORD), and occurs when acids from the stomach escape into the oesophagus, that then causes a burning sensation.

On a basic level, it is advised to avoid alcohol, caffeine, spicy foods, and fatty foods. As an extra step, decreasing the consumption of acidic foods, like tomatoes, can improve acid reflux.

I also avoid eating two to three hours prior to bedtime as lying down can exacerbate the reflux of acid into the oesophagus.

If you’re looking for some recipe ideas for Scleroderma, that help with GERD, I have a whole section of scrumptious recipes made in mind for those of us with Gastroparesis and GERD. Head to my Recipe page here.

My Courgette Soup is very popular and the perfect place to start!

I discuss some things that are good to eat here: ‘Natural Therapies for Scleroderma’.

What medications do you take for Scleroderma?

I would be hesitant to reveal all of my exact medications as this is so deeply personal to each individual.

I personally take medication for my Raynauds, Gastroparesis and Gerd, Arthritis and Lungs (this is just for my Scleroderma).

However, I discuss some natural therapies that I take alongside my prescribed medication above that I would be happy to divulge in. You can read this blog post for more information: ‘Natural Therapies for Scleroderma’.

I have just been diagnosed with Scleroderma, what should I do next?

Firstly I would just send you so, so much love. And whilst love can’t always fix things and it can’t change things it can be a presence for you as you come to terms with your diagnosis and beyond.

So first things first gather a strong support base that can help you.

When I was diagnosed with Scleroderma it changed my relationships forever. However, now I am left with a small but deeply nourishing set of humans who love me and who I can lean on when I need them.

I would suggest going to the Scleroderma charity SRUK and leaning on all the support they offer. There is a Facebook group and so much advice on specialists and doctors. I would also recommend finding a counsellor who specialises in chronic illness.

Otherwise please be gentle and loving towards yourself. There are two posts that I wish I had read when I got my diagnosis. They are as follows:

  • Losing Friends to Chronic Illness– This is one of my most-read posts and it still rings true today. It helped me heal after being so abandoned during my battle for a diagnosis.
  • Chronic Illness and Mental Health– This is a post from my heart about the relationship between chronic illness and mental health. In it, I describe the lessons I have learnt and how they have helped me.

Is there a cure for Scleroderma?

Sadly no, there is no cure for Scleroderma.

However, the impact that Scleroderma has on everyday life varies enormously from person to person. For many people, it can be very mild and easy to live with. For others, it can cause serious physical disability and become life-threatening. This depends a lot on which parts of the body are affected, and how. There are two types of Scleroderma that discuss this in more detail: localised scleroderma and systemic sclerosis.

Are you able to work with Scleroderma?

Yes, I am still able to work. However, I could never work a typical 9 to 5 job ever again.

I am a freelance art and music history writer for 4 days a week and then work on my blog for 1 day a week.

As of 2020, I am trying to reduce my working week to 4 days as my fatigue is very debilitating and I find taking a day for rest and away from the structure of a workday helps me thrive that much more.

♥♥♥♥♥♥

EARLY SYMPTOMS OF SCLERODERMA AND HOW I WAS DIAGNOSED

Scleroderma Resources:

Thank you so very much for taking the time to read this post and engage in any way you can with this very important Scleroderma Awareness Month.

I’m truly beyond grateful and your constant love and support is the strength that I will use to create the seemingly impossible things.

To read all my posts about Scleroderma the dedicated category is right here and I also have a Raynaud’s category right here.

Do you have any more questions you’d like to ask me about Scleroderma? Please leave them below so I can answer them for you.

Share and Enjoy !

Shares
How to Support Your Friend and Loved One With a Chronic Illness

Scleroderma Awareness Month 2020

June is Scleroderma Awareness Month with the 29th June marking World Scleroderma Day. You can head to the Scleroderma registered charity SRUK to find out more about this right here.

Each and every single day, however, is important for all of us suffering from Scleroderma.

We are always fighting for our voices to be heard and to raise awareness for all of the illnesses, visible and invisible.

This June I will be focusing on ways I manage my illness from a holistic perspective. This includes essential oils, creams, and teas I enjoy to help me to manage the symptoms outside of my strict medication system.

Firstly, the hashtag for June is #KnowScleroderma. So with that:

What is Scleroderma?

Scleroderma, is a rare, chronic disease of the immune system, blood vessels & connective tissue and affects 2.5 million people worldwide with sadly no cure.

There are a few variations of Scleroderma. These include: Localised Scleroderma, Limited Scleroderma and Diffuse Scleroderma.

I have limited systemic sclerosis meaning that the excess of collagen causes scarring & stops the affected parts of the body such as the heart, oesophagus, blood vessels, kidneys, lungs, blood pressure & digestive system from functioning normally. You can read all about my journey with my symptoms and my diagnosis here.

Currently, it’s estimated that 2.5 million people are living worldwide with Scleroderma, including 19,000 in the UK, with 1,300 being diagnosed every year.

This month, SRUK is calling on people to #KnowScleroderma better in a bid to both help people with the symptoms find the resources they need, and help friends and family support those that are suffering from this truly cruel disease. 

How You Can Help Support Me During Scleroderma Month

For me, to accept that modern medicine cannot restore you and that there is no cure is an ongoing grieving process. It can also be exhausting to raise awareness for chronic illnesses.

In May of this year, I wrote a post really leaning in the depth of my vulnerability to share the effect living with Scleroderma, and other illnesses, has on my mental health. You can read this post here.

Any help you can lend to me and other Scleroderma sufferers this month means more than words can express.

So how can you help this very important day? Firstly, it would mean so much if you could share this post you’re reading or any of the posts from my Scleroderma series you can find below. This small gesture is so powerful.

Beyond this, this post contains all the symptoms I had before I had my Scleroderma diagnosis. Do you recognise any of these in either yourself or your loved ones? If so please help yourself or others by directing them to help.

You can also help me by supporting my Depop shop. All money raised from items sold here is sent to SRUK. The link is right here and I update it as often as possible.

Finally: Thank you. Just so, so much. Thank you for taking the time to read this and engage in any way you can.

I sincerely love each and every one of you so very much and your constant love and support here is the strength that I will use to create impossible things. 

Read my Scleroderma Blog Posts here

Head to SRUK here

Share and Enjoy !

Shares

Spiced Carrot Soup for Raynaud’s Disease, GERD and Gastroparesis (Vegan + Dairy-Free + Gluten-Free)

For Raynaud’s Awareness Month I’m sharing this carrot soup that is lovingly made in mind for those who are vegan, dairy-free, gluten-free, and of course for those like me who suffer from Gastroparesis/GERD or similar, that is filled with warming spices to nourish your soul.

I’m a big believer that food is medicine and this soup is just what the doctor ordered! Each spoonful is better than the last and I hope you all enjoy this nourishing soup as much as I do.

But why is this so good for Raynaud sufferers like myself? Well, that’s thanks to the glorious spices that go into this nourishing bowl of goodness.

Cumin is one of my favourite spices in the world and one I use regularly as Chilli is sadly highly irritating to those with GERD and Gastroparesis. However, Cumin is just as special in my opinion. This magical spice acts to reduce the fat in the plasma of the blood, one of the main contributors to poor circulation.

Then we have Coriander; a truly divine herb for me. Did you know that Coriander is said to have its name etched in numerous Sanskrit texts dating more than 7000 years?

Coriander is indigenous to the Mediterranean region and has been used throughout the history of various traditions both for culinary and medicinal purposes.

I’ve used Coriander alongside the powerful benefits of Cumin as traditionally it is especially effective for indigestion, stomach ache, nausea and other gastrointestinal disorders. It’s also a powerful spice for aches and pains making this a wonderful addition to this healing bowl.

spicy carrot soup vegan gerd gastroparesis

Spiced Carrot Soup for Raynaud’s Disease, GERD and Gastroparesis (Vegan + Dairy Free + Gluten Free)

For Raynaud's Awareness Month I'm sharing this carrot soup that is lovingly made in mind for those who are vegan, dairy-free, gluten-free, and of course for those like me who suffer from gastroparesis/GERD or similar filled with warming spices to nourish your soul.
Prep Time 15 mins
Cook Time 40 mins
Course Appetizer
Cuisine Indian
Servings 2 (or 1 big portion)

Ingredients
  

  • 1 tsp Olive or Coconut Oil
  • 1 Celery stick (finely chopped)
  • 2 Large Carrots (diced)
  • 1/4 tsp Freshly Ground Cumin
  • 1/4 tsp Freshly Ground Coriander
  • 1/4 tsp Dried Thyme
  • 500 ml Vegetable Stock/Broth
  • Sea Salt (to taste)
  • Pepper (to taste)
  • Fresh Parsley (to season)

Instructions
 

  • In a large pan, heat oil on a low to medium heat and add the diced carrots to soften with the lid on for about 20 minutes. Stir regularly. 
  • Add the chopped celery for 2 minutes and then add the spices and thyme for another minute.
  • Add the stock or broth to the pan and then bring to a boil. Then turn the heat down slightly and allow to simmer for 15 minutes. 
  • Puree the soup with a hand blender for a smooth consistency and add fresh parsley. If you don't have a hand blender, add to another blender you have in small batches. 
Keyword carrot soup, dairy free, gastroparesis, gluten free, raynauds disease, scleroderma, soup, soups, vegan

Pin Me For Later….

If I could write you a prescription for your winter to come, it would be to pour a cup of tea, whip up a batch of this nourishing soup and enjoy a cosy night of self-care. Or, instead, enjoy it in the daytime on a rainy day, tucked up inside, tending to your heart and soul.

I do hope you enjoyed this post and the first in my Raynaud’s Awareness Month series for this year. Are you looking for more recipes from me? If so you can find them right here.

And finally, do you have any requests for me? If so, please be sure to let me know, and if you try this with me please share the results with me on Twitter or Instagram; I’d so love to see!

♥ SUPPORT GEORGIE XOXO ON KOFI ♥

Thank you so much for taking the time to read this post and for being here. I love and appreciate you beyond words.

Georgie xoxo is a blog for those seeking everyday whimsy, with a heart full of wanderlust focusing on travel adventures, pretty crafts, chronic illness and words on finding the meaning in life through wonder and enchantment.

It’s my ultimate hope that there has been something on my blog that has enabled you to travel into the deepest realms of wonder and enchantment so that you can truly feel and embody your own world, and the world around you, that can be filled with more magic than you could possibly imagine. 

By supporting Georgie xoxo on Kofi, you enable me to bring these ideas and whimsical tales to life. Thank you in abundance for your love and support that is the strength that I use to create impossible things.

SUPPORT GEORGIE XOXO ON KOFI HERE

Share and Enjoy !

Shares
World Scleroderma Day 2019

World Scleroderma Day 2019

Today is World Scleroderma Day, but of course, each and every single day is important for all of us suffering from this condition. We are always fighting for our voices to be heard and to raise awareness for all of the illnesses, visible and invisible. So this month I made a promise to myself that I’d find the courage & strength to open up today to inspire & support other people battling chronic illnesses.

Scleroderma, is a rare, chronic disease of the immune system, blood vessels & connective tissue and affects 2.5 million people worldwide with sadly no cure. There are a few variations of Scleroderma & I have limited systemic sclerosis meaning that the excess of collagen causes scarring & stops the affected parts of the body such as the heart, oesophagus, blood vessels, kidneys, lungs, blood pressure & digestive system from functioning normally.

Currently it’s estimated that 2.5 million people are living worldwide with Scleroderma, including 19,000 in the UK, with 1,300 being diagnosed every year. So this month, the SRUK is calling on people to #KnowScleroderma better in a bid to both help people with the symptoms find the resources they need, and help friends and family support those that are suffering with this truly cruel disease. 

For me, to accept that modern medicine cannot restore you and that there is no cure is an ongoing grieving process. So often the choices and compromises seem unfair and without reprise when battling a chronic illness, and there are many of these double-negative decisions to be made most days that people just don’t see that naturally has felt like a huge dark cloud.

However whilst Scleroderma is an extra challenge in life, a silver lining has prevailed in the way that is has blessed me with a much-needed catalyst for an abundance of self-growth. It’s freed me of things that no longer served a purpose. It’s helping me understand who I am as a person, what I really want from life & instantly established limits & boundaries that I so desperately needed to set for myself.

It also made me realise more than ever that life is a blessing and I’m more appreciative than ever. So when things get tough I have, and I will, continue to focus my mind on something that I am grateful for. Like the days drenched in pure & utter loveliness like this photo & for all the incredible souls I have in my life. 

And how can you help this very important day? It would mean so much if you could share this, or any of the posts from my Scleroderma series you can find below.

Scleroderma Blog Series

Thank you so, so much for taking the time to read this and engage in any way you can. I sincerely love each and every one of you so very much & your constant love & support is the strength that I will use to create impossible things. 

Share and Enjoy !

Shares
Natural Therapies for Scleroderma

Natural Therapies for Scleroderma

Disclaimer: The information in this post is solely for inspiring wellness based on my/others experiences; this is not medical advice. It’s always advisable to contact a medical professional before undergoing any form of conventional or alternative medical treatment.

The next post in my Scleroderma Awareness Month series is about how I use natural therapies to help alleviate some of the symptoms the disease brings. Typically, drugs are used to address autoimmune diseases and for most of us suffering in this way, they are lifesaving and help people get their lives back. However, sadly they do also come with adverse effects and that’s where natural solutions can help, alongside my daily prescribed medication from my specialists. 

In addition, sometimes the problem with conventional medicine is that it doesn’t seek to ask why the body is out of balance. Moreover, medical treatments often mainly focus on understanding and correcting the underlying problems that are causing your symptoms rather than understanding the individual emotionally and physically as a whole.

Natural therapies tend to be holistic and include medicines from various historical and cultural backgrounds. In order to see and reap the benefits, it’s also beneficial to examine diet, exercise, meditation or psychological exercises as well. The ways in which these therapies are thought to work are also diverse, although many are based on the idea of enabling your body’s ability to heal itself.

Fundamentally, both medical and natural forms of treatment emphasise the quality of the relationship between you and the practitioner. And when both natural therapies and medical treatment approaches are used, this is called integrated medicine.

Myvatn Nature Baths, in Northern Iceland, for the ultimate in natural therapies!

Essential Oils

Essential oils are natural aromatic compounds found in the seeds, bark, stems, roots, flowers, and other parts of plants and have been used throughout history in many cultures for their medicinal and therapeutic benefits. 

I’m hugely passionate about aromatherapy and essential oils, and that’s why I’ve started with this natural therapy first because I find it to be one of the most beneficial things I have ever done for my health.

However as with all of these natural therapies, whilst I use essential oils to help manage the symptoms associated with my autoimmune disease and other illnesses, I use them to augment the medications I take and the lifestyle changes I have made.

I really want to do a post about essential oils in more detail collaborating with an aromatherapist.

Before such post, I just want to make sure that if you are looking into essential oils to help with your autoimmune disease, that you are conscious that you are not further inflaming or boosting immune function since autoimmune diseases are the immune system attacking your body. You don’t want to double your body’s effort in attacking itself!

For example, the following essential oils wouldn’t be so suitable for those suffering from an autoimmune disease and they include: Palmarosa, Rosalina, and Thyme to possibly name a few.

In general, any essential oil that is listed as an immunostimulant should be avoided or at least only used only occasionally small doses (I still use Palmarosa for my mild PCOs acne, as an example). And always remember to dilute the essential oil with a carrier oil if you are applying it to the skin.

Some of my favourite oils to use are Cinnamon (wonderful for pain relief), Lavender (just my love of life and gorgeous for soothing and relaxing), Clary Sage (for hormone balancing and mood-boosting properties), Copaiba (for severe pain) to name but a few, but a whole post will follow shortly!

I also highly recommend Dottera oils (not sponsored!)

Light, Low Impact Exercise

Oh exercise….my least favourite thing in the whole entire world! However, indulging in light and low impact exercises that can alleviate stiffness and the pain that comes with Scleroderma.

And despite my loathing of exercise, it’s proven time and time again that gentle exercise is a natural anti-inflammatory.

You don’t necessarily need to be a gym bunny, run marathons or do crazy adventurous things, but just to start moving naturally with your body can indeed work wonders. 

But before you start to include any type of exercise in your daily routine I advise to start with a medical assessment before you start with a professional trainer or your medical team.

It’s really important to understand that if you have conditions other than Scleroderma, that you might have other limitations as well. For example, I have extremely low blood pressure from some of my other conditions and so even some floor based exercises can make me a bit dizzy upon rising. 

As part of my daily life, I follow one of the following gentle aerobic exercise programs, such as walking, pilates, yoga, tai chi or any water-based exercises because I find that they can help to manage symptoms such as stiffness, pain and sleep disturbance.

Having said this, just a warning about some of these: water-based exercises could bring on a Raynaud’s attack, so make sure you plan extra carefully to stay as warm as possible. I have found a heated pool in my area and find that to be so helpful. I talk more about this in my ‘Top Tips for Managing Raynauds’ post.

Moreover, for floor-based activities like Pilates and Yoga, it’s worth being cautious about any low blood pressure issues you could have, and also the fact that if you have GERD like me that you’ll need to manage this with medication beforehand. 

Finally, if exercise overall still feels like something too impossible, look at areas in your life where you can move a little more regularly. For me, that’s the opportunity to walk instead of driving if I am able to, or using the stairs rather than the lift. But please always listen and trust your body always. 

Diet and Supplements 

We are bombarded with ‘what we should eat’ on a daily basis and the pressure for those with autoimmune diseases to eat a certain way in a bid to ‘cure them’ is overwhelming and hugely upsetting to hear.

Before anything else, Scleroderma sufferers, and in fact anyone suffering from an autoimmune illness, should always, always consult their doctor(s), their rheumatologist, and a dietician before using any vitamin or herbal remedies before making any significant changes in their diet. 

And in fact, the whole topic of nutrition in relation to Scleroderma is more than anything I can hope to cover in this post alone so be on the lookout for a far more in-depth journey on this topic soon.

Meanwhile, in a nutshell, the gut is affected in up to 90% of patients with systemic sclerosis, so awareness of nutrition is particularly important if you have this form of the condition like me.

The technical name for the gastrointestinal symptoms that occur in Scleroderma is called Gastroesophageal Reflux Disease, (GERD/GORD), and occurs when acids from the stomach escape into the oesophagus, that then causes a burning sensation.

As a result, it is advised to avoid alcohol, caffeine, spicy foods, and fatty foods. Furthermore, decreasing the consumption of acidic foods, like tomatoes, can improve acid reflux and also avoiding eating two to three hours prior to bedtime as lying down can exacerbate the reflux of acid into the oesophagus.

Ultimately there is no one specific ‘Scleroderma diet’ since symptoms and
the severity of the disease varies widely, however, I strive to create a balanced diet that emphasises foods that fight inflammation and provide
energy, protein, vitamins, and minerals, that are of utmost importance.

In order to achieve this, I choose fresh, whole, minimally processed foods, without preservatives, artificial ingredients or hydrogenated oils. If there are any ‘chemical’ sounding names in the ingredient list, I tend to avoid it where possible. In general, the shorter the ingredient list, the better!

I would describe my diet as Mediterranean, Japanese, Nordic and vegan inspired, rich in organic fruits and vegetables that are not too acidic. I limit meat, have no dairy because of a severe intolerance pre my illness, but I do consume fish sometimes.

Ultimately I find that the resulting nutritional balance strengthens my body and my immune system, which can lead to a reduction in the occurrence of scleroderma symptoms. In order to really get into this topic, look out for my recipe section to build momentum over the next few weeks as this will breakdown exactly what I eat. 

The final note on nutrition in this post would be to find a good dietician who can order Blood tests to assess serum haemoglobin, iron, ferritin, total
iron-binding capacity, zinc, vitamin D, folate, and vitamin B-12. This really helped me tailor the ideal eating program for me.

For more information on nutrition for Scleroderma please head to SRUK

Alternative Therapies and Self Care For Scleroderma

To end this post I just wanted to group together a few other popular alternative therapies that might want to be considered for Scleroderma patients.

The focus on alternative therapies is, again, to not go into them thinking they are a cure for the disease. Rather, for them to add some hope, and work to aid in the quality of life, that can be greatly improved with homoeopathic medicines.

The first is Chinese medicine, that by its very nature, treats the person, not the disease, and the physical manifestation of a problem is seen within a picture of the whole person involving all aspects of their body, mind and spirit. I’ve also warmed to this approach with auto-immune conditions where there is no obvious physical cause.

Chinese medicine seeks to restore balance in our body and mind and indeed, the earliest systems of Chinese medicine were asymptomatic, using the symptoms only as indicators of returning overall balance.

One of these is Acupuncture that is believed to stimulate the nervous system and cause the release of neurochemical messenger molecules. The resulting biochemical changes influence the bodies homeostatic mechanisms, thus promoting physical and emotional well-being. I must admit, I have yet to try acupuncture because of my low blood pressure but I’m looking into trying it soon!

Something I do highly recommend is Homeopathy that works to treats the person as a whole. It means that homoeopathic treatment focuses on the patient as a person, as well as his pathological condition.

The homoeopathic medicines are selected after a full individualising examination and case-analysis, which includes the medical history of the patient, physical and mental constitution, family history, presenting symptoms, underlying pathology and possible causative factors. My Auntie also swears by Homeopathy and I have found the experience to be hugely beneficial. 

Next up is Reflexology, an ancient practice that’s been passed down for thousands of years.

It is thought that The Incas and Native Americans may have introduced reflexology to South and North America, but proof of the practice dates back to 3000 BC in pre-dynastic China.

It works that based on pressure points in the hands and feet, that are said to connect to the nervous system, reflexologists pinpoint specific glands and organs to treat with massage techniques. 

Reflexologists claim to treat many ailments, particularly those associated with pain and inflammation, and whilst I didn’t feel an effect immediately, it certainly provided me with a huge sense of well-being and relaxation.

Before I end this post I want to add a personal note about emotional wellbeing.

Naturally, I’ve felt like I’ve been under a very dark cloud since being diagnosed with Scleroderma, and it’s taken me longer still to grasp the situation fully. Because ironically, despite living with this and a series of other chronic illnesses, I still cannot grasp this the deeply debilitating and mystifying elements of this illness.

Only those suffering from Scleroderma, or any other disease or a similar kind, truly understand the daily pain, anxiety, and depression that can accompany the disease.

That feeling of helplessness, as our bodies seem to transform and turn against them. Anxiety and depression only exacerbate the symptoms, as vital energy is directed away from the self-healing process.

However, this period of struggle has also been a catalyst for an abundance of growth. It naturally freed me of things that no longer served a purpose and allowed me to dig deeper into understanding who I am and what I really want and to reestablish limits and boundaries where they were needed. 

Moreover, I have found that by redirecting that energy and putting it to work, it in return helps our bodies come to a more harmonious balance.

I’ve found that spiritual contemplation, counselling and meditation, in many different factors, has helped me to deal more effectively with the symptoms of this disease, and it has also allowed me to direct this energy to the attainment of total health in both body and mind.

♥♥♥♥♥♥

Scleroderma Resources

Thank you so, so much for taking the time to read this post and engage in any way you can with this very important awareness month. I’m truly beyond grateful and your constant love and support is the strength that I will use to create the seemingly impossible things.

To read all my posts about Scleroderma the dedicated category is right here and I also have a Raynaud’s category right here.

Meanwhile, do you have any questions about natural remedies for Scleroderma? Please leave them below and I would be thrilled to connect with you all xoxo

Head here to read my Scleroderma Post Series

Share and Enjoy !

Shares
Shares