Link Love #3

Hey gang! How are all we all doing on this lovely morning? Here are some fab links you can get your teeth into on your commute…

  1. Lauren’s post about dealing with a chronic illness I could totally relate to.
  2. This idea for a kindness advent calendar.
  3. I have definitely had all of these thoughts whilst on the tube, especially no 48!
  4. I also loved this post also about commuting in London….
  5. Madeleine Shaw’s tips about how to survive the festive season are well worth a read.
  6. I loved these 50 ideas for how to practice self care.. something I need to remind myself in this festive period!
  7. Finally, If you have 1 minute it would be amazing if you could sign this petition to fund more research into Ehlers Danlos Syndrome.

I’m loving these sunny winter days we’ve been having and the evenings have been great to catch up with all the blogs I love to follow (and I’m A Celeb of course!)


What have you guys been reading recently?!

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Link Love #1

So I’ve been reading some incredible things across social media and blogs recently. There are some seriously amazing writers and people out there and I’m all about sharing good work! I know I rely so much on people sharing what they love on social media, so I thought I would create a series of posts containing all the writing I’m loving at the moment.

I’m not sure how regularly I’ll post all my link love but you can be sure that when it does arrive it will be everything I have been loving recently!

So here goes, # 1!

  1. This post from Elle Next Door who describes what it is like to live with Coeliac Disease so perfectly. I would never be able to express this in such an articulate way. I read it and could relate to every word. Please have a read!
  2. Sophie Cliff’s post about needing a duvet day. I am often a culprit of trying to keep going with everything all the time, I know I often need a duvet day but don’t let myself have one because of the guilt of being unproductive. This has reminded me that it’s important to give your body & mind a break every once in a while!
  3. Hannah Gale’s post about how women treat other women in regards to their bodies. This post is just so needed in the current society we live in and I could not be happier to share it for you all to read!
  4. Lauren Rellis’ post about how suddenly health can become such a priority. This was a post I can really relate to and it really made my morning when it landed in my inbox. It always amazes me how the internet can remind me that people feel/think the same things and that is so comforting!
  5. The story of what it was like to be on Air Force One on 9/11 had me avidly reading earlier this week. It gave definitely gave me chills.
  6. Amy’s description of what a Sunday Well Spent looks like had me dreaming of Sunday already!
  7. This description of what people with chronic illnesses hear when certain phrases are used is well worth a read even if you don’t know anyone with a chronic illness.

Let me know what you think of all these posts, and what would you suggest I get reading this week!?

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What is a Spoonie?

Spoonie. A term that is being used increasingly in mainstream articles. But what exactly is it?

The term “Spoonie” was coined by Christine Miserandino to describe the impact of her chronic illness. It has fast become a very popular way to describe what it is like living with a chronic illness to people who might not have experienced living with one, or knowing people who have suffered.

The full story can be found on her website here.

It is SO worth a read. It quantifies and explains what is quite an abstract idea.

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Essentially the spoon theory is that you have a limited number of “spoons” per day. Each activity you do takes up a spoon. So showering and getting dressed is a spoon, making breakfast is a spoon, getting to where you need to go is a spoon, lifting something heavy is a spoon, making dinner is a spoon, unpacking the dishwasher is a spoon. You have to prioritise your spoons. Obviously, going to uni/work is nonnegotiable, so sometimes social or cleaning activities have to fall by the wayside. It’s all a juggling process – something that I have learnt to do over the years – but it can be frustrating having to plan and organise your life so that you don’t run out of “spoons”.

Have any of you heard of the spoon theory? What do you think of it?

 

Epsom Bath Salts

I’ve talked about various back problems I’ve had in previous posts, but just to give you the low-down. I have a connective tissue disorder called Ehlers Danlos Syndrome which means that my joints can move out of place very easily as my connective tissue doesn’t work as it should. It also means I have chronic neck & pack pain. Doing things like carrying a bag or a suitcase, standing up for long periods of time or moving in a funny way can result in excruciating pain so I spend a lot of time looking for ways to relieve this pain.
Obviously pain medication is useful, but with chronic pain taking it all the time isn’t really an option or good for you, so I try to find alternatives. 

Ice packs are my best friend, along with hot water bottles. However one of the best pain relievers I have found are Epsom salt baths. Epsom salts have a high level of magnesium that absorb into the skin and also have healing properties. I think they are used quite a bit now by athletes who want to have a quick recovery time between training sessions. 

I try and have a bath around 3 times a week with these salts. I put around 500g in each bath to make sure I really get the most pain relief from them. They are honestly a life saver and have really helped me through some sticky situations! I find they relax me enough for joints to often go back into place on their own (big shout out to my ribs) rather than having to make a trip to the Drs. Plus they’re perfect to lie in with a cup of tea and a good book (or bloglovin to catch up on my favourite blogs!) I also find they really help my state of mind when I’m in a lot of pain and come out of them a lot more positive and ready to deal with the situation than when I went in! 

If anyone out there is struggling with similar pain issues I would really recommend them. 

Do any of you have any pain relief tips? I’m always on the look out for some new ideas! 

Dear Diary: EDS & POTS

Hiya! How is everyone doing this Tuesday morning?

I thought I’d give you all the low down on my current health situation. My health has been a topic of… let’s say “discussion”.. amongst family and doctors alike for many years now. I have recently been diagnosed with Ehlers Danlos Syndrome type 3 (the hyper mobility type) which is a rare connective tissue disorder. Not many people (or Doctors!) have heard of it so I would be very surprised if any of you have! EDS means that your joints don’t really like staying in place and often dislocate or sublux. There are a whole host of symptoms associated with EDS (like gastric issues, chronic fatigue, brain fogginess, hypoglycaemia  & sensitivity to toxic substances like bleach) which I am currently in the process of figuring out, and starting on many many supplements..

The diagnosis explains a lot of my previous health issues, like a bad back & neck and popping ribs out when sitting up or sleep to restlessly (oops) as well as various digestive issues. It’s a rare syndrome so I thought I would use this lovely platform I have to raise a bit of awareness about it, and maybe connect with others who have the syndrome. I’ll keep you all updated on my progress of discovering what it all means…

Having been diagnosed with EDS I have also been diagnosed with Postural orthostatic tachycardia syndrome (POTS) which is often seen as a secondary condition to EDS. POTS is a condition where your heart rate increases upon standing, often resulting in blacking out, fainting, dizziness and light-headedness. It explains for me why I often lose my vision when I stand up and quite frequently faint. POTS also goes hand in hand with Chronic Fatigue syndrome which I was diagnosed with when I was 13.

Whilst I get referrals through from my GP for specialist physios and Drs specialising in digestive issues with EDS I am continuing treatment on my very grumpy back and I’m on the FODMAP diet. This basically means I am a joy to eat out with.. no dairy, gluten, onion, garlic, legumes or artificial sweeteners… yup you guessed it, my friends love me! (No but really they are all very supportive and I think I provide the entertainment when I confuse all the waiters with my various requests to leave things out from dishes!!)

I’m feeling very grateful for finally having a diagnosis after 10 years of seeing various Drs, but at the same time it feels rather bitter sweet knowing that there isn’t a magic cure as EDS currently has no known treatment or medication. I’m very much looking forward to getting a handle on my symptoms and hopefully stop slipping discs and start being able to exercise again!

I would love to hear from anyone who has EDS or POTS or anything similar to see how you are getting a handle on the symptoms 🙂

Anyway I’m off to lie in the sun.. apparently that helps my back (Any excuse, eh!)

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