chronic illness

Illness shouldn’t be competition

Originally, back in 2014, I got into blogging and social media as a way to share my experiences around living with chronic pain and fatigue. To, I guess relieve some of the loneliness and isolation I felt because of these things. Did it work? Did it help? Yeah of course. I suspect there are thousands who use the internet every day for those very same reasons.

The world of social media can be very simply put, split into different groups of categories/ communities. The fitness community, chronic illness community, beauty community etc

Today I want to focus on the chronic illness world.

Compared to other internet sub groups. There are some real problems within our community that you don’t really see anywhere else. For example I’ve never seen those in the beauty world exclude others for doing well in life. Yet that’s exactly what happens in the chronic illness world.

Hey you managed to go to the gym, to school, work etc. You didn’t have surgery or take a certain medication. Well, you’re not really sick then. Bye.

It’s absolute madness.

Everyone seems to forget that we’re all on different paths in life. We all have different definitions of normal, different goals etc. My normal could be another persons worst day. Similarly my worst day could be someone else’s normal.

Instead of excluding others and constantly judging. I think we really need to be more encouraging. Congratulate the person who managed to get out of bed and meet their friends today. If anything surely others struggling with illness, know how difficult something so seemingly simple can be.

Be kind. We’ve all fighting our own battles.

Charlotte

xxx

chronic illness · Fitness · Uncategorized

Going To The Gym With Chronic Pain.

At the end of March I started getting serious about my fitness journey. It was something I’d talked about probably for the last 6 months. I just hadn’t got round to doing it. Honestly I think it was fear that put me off. The fear of hurting myself and ending up adding to my existing pain.

That hasn’t been the case though and I’ve enjoyed every gym session. Even the ones where I’ve felt like shite and dragging myself to a workout has been the last thing I wanna do. Don’t get me wrong it’s not been easy, but investing in a personal trainer and a gym membership has definitely been a worthwhile investment.

I’m still very early into my training programme and have been sharing my journey so far across social media, mainly for myself, as a way of holding myself accountable and keeping a visual diary of any progress.

Mentioning the decision to get fit online was really fucking scary. I’d be a liar if I said all the feedback has been positive but judging by my inbox several people have been ‘inspired’. (I’m no inspiration believe me) I hope this post helps in some way based on my experience so far.

Getting started on your fitness journey first of all requires some brutal honesty with yourself, mainly are you really ready? Whilst there’s no doubt that exercise can be helpful at any point in your chronic pain journey, jumping in full force only a few weeks after diagnosis sounds like it could only end badly. My personal belief is that you need to have already grieved for your past life and accepted your condition and limitations BEFORE making the decision to ‘get fit’.

This leads to my next point about being somewhat stable. Working out requires being able to tell the difference between what is your ‘normal’ pain that you can push past, (I hate the term normal but can’t think of another way to word this) acute pain that means something’s wrong / you need to stop and finally the good pain associated with a good training session. Yeah I know, believe it or not there is a ‘good’ type of pain, who’d of thought?

You need to be able to commit. Ready to commit. This whole journey has been outrageously frustrating at times. There’s been tears more times than I’d like to admit. There’s been a lot of laughs too though. You can’t just give up at the first hurdle. Unfortunately you’ve just gotta accept it’s gonna be hard at times.

Be open minded and flexible. Originally my goal was to just be able to get out of bed, show up and survive a training session. Now we’re coming into October and my goal has changed. Not every day or session is gonna be easy. Life gets in the way, health gets in the way. Accept that this is a journey and sometimes there’s going to be bumps in the road.

Take things one day at a time and try not to get discouraged. That’s my plan anyway.

You can follow and keep up with my journey on Instagram.

Charlotte

xxx

chronic illness · Personal

I’m not perfect

I’ve written, rewritten and then written again this post I don’t know how many times. Maybe grab a drink because believe me, there’s a lot I want to say. I know from experience though it’ll probably come out a bunch of swearing ramblings with the point I was tryna make in the middle somewhere. I apologise in advance. However it’s all personal thoughts from the heart.

If you’ve read any of my posts here or on my ‘old blog’ www.missclx.com you’ll have noticed I tend to write exactly as I speak. So yeah, nothing I ever write is going to be the greatest piece of grammatical reading. (I bet you’re looking forward to the book already 😉 ) I’m never going to be the most perfect or most popular blogger. I’m just never going to be perfect in life.

In December 2017 I had every intention of doing blogmas. I had some great content ideas, was feeling festive and inspired… Then chronic pain took hold, like really fucking took hold. I’ve struggled for a long time with pain, but nothing and I mean NOTHING ever prepares you for the moment you contemplate throwing yourself in front of a car or straight up killing yourself two weeks before Christmas. YES I was in THAT much pain. If I got hit by a car, best case scenario I’d break both my legs, end up needing surgery and drugging up to my eyeballs. That would be enough time for the pain in my face to chill the fuck out. Worst case scenario, well we all know what that is, but hey at least I wouldn’t be in pain right? I’m used to the rollercoaster of up and down days. That day … was shit.

Here’s a little mind fuck for you… You get to a place where you feel comfortable in your skin and your body. Even if it doesn’t always work right. Then you have to start medication that causes an average weight gain of 40 pounds. You can be body happy and ill or obese and pain free, you can’t have both.. I bet you’re reading this thinking the answers obvious. To most it is, and to me it was too. Right now though I can’t help feel disgusted when in the mirror.

Charlotte this is sooooo depressing. Why are you telling us this stuff ? First of all people wanted me to write more personal posts. Second and most importantly of all as a way for me to express myself. Believe it or not that was why I started to blog in the first place….for me. Honestly I think a lot of bloggers / vloggers forget that before they turned their blogs into businesses, they were just safe little corners of the internet where you could express yourself. BE yourself…

I’m so sick of pretending to be something I’m not, whether it’s online, or in real life, all I want to be is me.

The only goal I have for 2018 is happiness. I truly hope to share my journey some of that happiness with you on here

I won’t promise you an upload schedule, because I’ll only fail and end up annoyed with myself. I really need to beat myself up less going forward. I do have some plans for a blog overhaul, new look etc as well as some cool content but I’ll keep you all in suspense.

Remember to follow so you don’t miss out !!

Love

Charlotte

xxx

chronic illness

Chronic Illness Gift Guide – Blogmas #4

Forever one to create original content, I’ve decided to jump on the bandwagon and create a gift guide. Not any old gift guide but one containing some idea for the chronically awesome chronically sick person in your life.

Before I dive straight into the list I really must stress that us ill folk have interests outside of, you know, being ill. So if you know them well enough it’s probably best to go down that route and choose a more personal present. This is just my top five safe bets I know I personally, as well as many other illness warriors would be happy to receive.

Pajamas

Speaking for myself. I’m 90% sure I own more PJs rather than actual clothes. At least I definitely feel like I wear them more often. A nice pair of pajamas is a lovely treat and not something people often think of buying for themselves. A pretty safe bet and a present that you can splurge on or still get on a budget.

Hot Water Bottle / Warmer

As the weather gets colder and being someone who suffers with random aches and pains, there’s nothing I love more than being tucked up cuddling a hot water bottle or warmer. Whether you prefer a traditional bottle you fill with hot water from the kettle, or a microwaveable teddy, there’s a wide variety of gift sets out in the shops at the moment. I’d recommend the noozie, a rechargeable heat pack that stays warmer for longer than a hot water bottle, is easy and quick to use.

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A gift card

This may not sound that interesting. However I love nothing more than internet shopping. It’s even better when somebody else is paying for it. Not only have you given someone the potential to buy exactly what they want for Christmas. You’ve also bought the gift of something to keep me entertained for a couple of hours.

Pillows / Cushions / Fairy Lights

I spend a lot of time in my bed, therefore it being comfy and cozy is really important to me. Who doesn’t love cute cushions and twinkling lights?

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Socks / Hats / Scarfs / Gloves

Us sick folk get cold. There’s tons of cute gift sets containing these items around. I can never have too many pairs of socks and you can guarantee that if I have to step outside in the less than warm months, I’m gonna be wrapped up in enough scarfs and cozy material, that I could quite easily be mistaken for a ski resort guest.

Let me know what you’ve asked for this Christmas

Charlotte

xxx

 

chronic illness

Coping with chronic illness at Christmas – Blogmas #2

Unfortunately for everyone out there with a chronic illness, you can’t just switch off your health issues in order to take a break and really enjoy the holiday festivities.

It’s difficult to explain exactly what is chronic illness warriors go through or how we feel, but Christmas especially, can be an exceptionally difficult time. One moment you’re spending 90% of your time alone in bed. The next you’re expected to spend 90% of your time with family and friends, thrown in the deep end and an active participant in all the festive season has to offer. It can feel a little overwhelming to say the least.

So what are you meant to do? How are you meant to deal with it all? A lot of managing chronic illness comes from experience, something I seem to unintentionally gathered from years of trial and error. In today’s post I thought I’d share my best tips / tricks / advice for coping this Christmas.

Remember Medication

Remember doctors surgeries and pharmacies opening hours may change of Christmas and New Year. Make sure you have enough medication to cover you through this period and remember to take it with you when out and about or staying away from home.

Plan & Pace

As much as possible try and develop a clear plan of what you’re doing and when, who you’re seeing and how long for. Try not to plan to much in one go. Include rest / self care time in order not to crash and burn

Say NO / Communicate

If something’s too much for you, you know it’s going to cause you pain / discomfort or you’re just not feeling it. Don’t be afraid to say no. Friends and family should understand. If they don’t well…. However most of your nearest and dearest wouldn’t want you to make yourself ill. Is there a family member or friend you could talk to about your illness? Someone who could support you if you start to not feel good? Don’t suffer in silence. It’ll only make you feel worse.

Rest / Self Care

If you’ve managed to plan, then you should have included some rest time. For example if I know in advance that I’m doing something active or all day on Saturday then I’ll rest most of Thursday and Friday, as well as Sunday. Take the time to catch up on sleep, have a long soak in the bath, whatever makes you feel good. If you aren’t feeling good and looking after yourself, it’ll be difficult to enjoy yourself.

Accept

Acceptance is such a big part of life with a chronic condition and I’ve spoken about it several times before. We need to accept that our lives are different to how they were. We may have to do things differently or accept that we can’t do them at all. It’s not easy buy any means, but speaking from my own experience, accepting I won’t be able to do everything the average person would this Christmas, is a big pressure of my shoulders. I’m totally ok with not being able to go late night shopping. All those crowds, out in the cold, the checkout queues. I’m honestly fine giving it a miss.

Have fun

Enjoy yourself !!! Having a health condition doesn’t mean you can’t have fun with your loved ones. Live in the moment and make memories you’ll have for a life time.

Anybody got a tip they want to share?

Don’t let chronic illness ruin your Christmas.

Join me on Instagram

Become a fan on Live.me and watch me stream daily

Charlotte

xxx

chronic illness

The Opiate Crisis, My Thoughts – Blogtober – #20

So this post my not be the most interesting or relavent to the majority of blogtober readers, however it’s something I’ve wanted to share my thoughts on for a while.


The opiate crisis is a BIG deal, especially for chronic pain patients. News articles are pumped out daily, it’s not a subject you can easily ignore. The majority of stories seem to be originating from the states, but from personal experience I can tell you lives world wide are being affected.  

Doctors and government agencies seem to have designed the narrative that opiates / narcotics are practically the devil. Endless statistics are being pushed onto the public about addiction, the fact that they aren’t effective, doctor shopping, overdose etc. A lot of the information out there seems biased. Nobodies speaking about the lives these drugs have saved.

Yes opiates save lives!

But Charlotte people don’t die from pain alone.. Don’t they?

As doctors face losing their licenses and patients are having their medication cut down or stopped completely, more and more chronic pain patients are committing suicide. I genuinely don’t understand how cutting access to vital pain relief, to those who need it, is helping keep drugs off the street and preventing addiction.

Chronic pain patients have always had to fight to be believed, for decent treatment and care. Now the hoops we have to jump through are getting rediculous. Drug tests are regularly forced upon patients. Doctor / patient relationships have fallen apart all because of strict rules and opiate contracts. Break a rule, sometimes unavoidable, and risk having your meds cut off without warning. Drug hoarding is a punishable offence. Why would I not hoard meds when there’s a risk you could cut me off suddenly?

Opiate contracts are statistically shown to have little affect in identifying drug abusers.

Statistics on suicide or the number of previously law abiding citizens having to resort to the streets for meds don’t seem to be out there right now. These aren’t the statistics that support the idea that opiates are evil. These aren’t the figures the government wants us to see.

This may seem a little all over the place. That’s cool, they’re  my own thoughts and sometimes rambling on is the best way of sharing them. 

Ultimately I believe the real opiate crisis is that pain is so poorly treated in the first place. 

Charlotte 

chronic illness

Interviewing A Fellow Chronic Illness Fighter – Blogtober #18

Earlier in the month I shared a little bit of my blogging background including the how and why I started. I mentioned how most people have a personal reason for starting to share their life online, and I was really interested in finding out other peoples stories.

So I thought I’d reach out to some of my blogger / social media chronic illness friends and perform a little interview. Hopefully posts like this will introduce you to some awesome new people to follow online, as well as offer some advice / tips / new points of view on chronic illness.

So with out further adieu. Meet my first interviewee.


 

Introduce yourself


My name is Roy George I’m 28 years old. I am a vocal coach, Vocal arranger and Music director. I also travel and speak on behalf of patient advocacy speaking at The Association for Vascular Access conferences and Short Bowel Syndrome conferences…

 
Can you tell us your diagnosis and the age you became ill?

I don’t remember a time i wasn’t “ill” I had this since birth. Its short Bowel Syndrome and massive malnutrition. 

What made you want to share your own chronic illness story and experiences?

 I spent a lot of time growing up without having people there to speak with about my journey and the dos and don’ts of life. It was really a trial and error experience. So with that being said, i really worked hard to allow myself to be open. Being open is a process and is truly something I struggle with and get nervous about. There’s a sense of vulnerability that comes with being open and sharing your journey. On the outside, i look incredible “Normal”. I’ve learned how to wear clothes that make me look “normal” and are stylish and look great. However, there comes a struggle thats deeper than the surface that people don’t get to see. We have the ability to make our social media accounts look like we live and lead extravagant lives but in reality we struggle. I wanted to be able to bust through the social media stigma and speak straight to people who were having a hard time and connect with people on levels that not everyone would understand. Trust me its STILL not easy but it really does give me great joy to be able to help in a small way if I’m able. 

How do you feel about the chronic illness community online?

I think like in any community you have AMAZING people and you have people that i will call positive suckers. Now, let me explain that phrase- that phrase means, I’m a glass half full kind of person. There’s always going to be people who ALWAYS see it half empty and that life is rough and theres a struggle. There is CERTAINLY validity to that. However, we all need to find the positives or else we won’t stand to be around for long. There will always be people who suck the life out of you and just want to take everything you give. You have to know your boundaries. What are you willing to talk about? What are you willing to share? How are you willing to share? What platforms make you most comfortable? Are you comfortable with social media contact or emails calls and texts. The community is hurting because there’s not a lot of outlets or want to discuss these intimate details. I mean you have all these Hollywood celebrities speaking out on cancer, and dry eye, alopecia and many other things and good for them. But what celebrity wants to talk about their bowel movements on national and international television? Its a natural thing. we all do it. But who wants to be KNOWN for that? Find the humor. find the joy. Don’t be afraid to be positive in a community that can sometimes be negative. I’m in no way saying the SBS community is negative as a whole. Negativity happens in any and every community no matter what. 

Do you have any advice or tips you’d like to share with someone newly diagnosed?

 Find the humor. Find where you can laugh at yourself. Find how you can look at yourself and see the glass half full. Oddly enough, someone ALWAYS has it worse than you. Parents have lost their children. Kids have lost their parents. Lets use our voice to get change. -Easier said than done but at least we can try. 

Do you have any advice or tip for friends and family of those diagnosed with a chronic illness?

DO NOT PUSH THEM. Don’t push them to share. Don’t push them to go out. Don’t push them to be happy. Don’t push them to be positive. Let them be mean and nasty. Meet them. Find ways to be effective and get what you want while not trying to change someone. As hard as it is on you to have a negative person in your life, try living with the condition and daily hangups that are normal for them. 

What’s the most irritating thing you’ve heard people say regarding your condition?

 “Just get some sleep you’ll be fine.” “You’ll feel better when you go out.” “You’re fine. It can’t be that bad.” “Are you really that sick.” “But you dont look sick.” 

How do you feel about the opiate crisis and how it’s affecting those with chronic illnesses?

I’m not familiar with it unfortunately. I know its getting more difficult to get pain killers because of this crisis. Unfortunately I’m uneducated in this department and for that I’m sorry. 

Tell us something positive you’ve achieved despite you illness.

 I’ve traveled around the country as a musician and singer and speaker. I’ve always performed off broadway at the age of 18 and have done some commercials and television as well. I’m pretty blessed that despite my condition, I’ve managed to not let it define me.

Where can we find more of you ?

 Please reach out on all the social media accounts twitter and instagram are Roysamuelgeorge and Facebook is Roy George and my Facebook page is Roy S. George You can also find me online at www.roygeorge.net and i host a podcast on iTunes called Triple Threats & Beyond and we’re also on twitter and instagram. Please reach out!!!! 

I hope you guys enjoyed getting to know Roy. Definitely go stalk him on social media. If you want to be a part of this series yourself, reach out on social media and maybe we’ll see your face here soon.

Love Charlotte

xxx