Trying to live with Chronic Illness

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Christmas gift guide for spoonies

Photo by Thought Catalog on Unsplash

Photo by Thought Catalog on Unsplash
[IMG] Picture shows a christmas tree from above with presents around the bottom, and one side on the floor is christmas lights and you can see someone’s feet wearing red socks. Name of the blog is written above and below is the title of the post

Hey there butterflies!

It can be so hard for the disabled, or housebound people to find nice presents to buy this time of year without facing the crowds. I have decided to put together a gift guide of small online shops that I think are great for finding nice presents and I actually shop there too!

None of these are sponsored in any way but I will state if anything was sent to me for free or anything as I go ok?

Chockabilly: This site is where I got a few accessories this summer which were in a you tube video I love this site they have cute hairclips, pins and handbags as well as real vintage and reproduction clothing. If you have a vintage gal in your life you will want to check out what they have!

Earthlight Crystals: This shop has a wonderful site with beautiful candle holders, crystals and homemade candles. They are on Etsy as well and both shops have some beautiful and unique pieces that would really make somebody’s christmas!

Urban Lune: This site is a gem, their candles are so unique and smell divine I cannot wait to give them out to my family this christmas! They also sell crystals, witchy essentials and tarot cards so you will certainly find something for everyone.

Cocoa and Heart: I was sent one of their gift boxes to review and you can see this video below, their chocolate is so delicious and I am definitely going to be getting some boxes for family! If you want to buy from them you can use the code XMAS18 for 10% off your order until January 31st 2019!

Grizzly Supplies: This shop is amazing it is all hand made real wood shelving for ornaments and especially crystals. I have had one for one of my christmas presents from my husband and omg I cannot wait to have it up and adorned with my favourite pieces! They have so many designs available you will be sure to find something special for someone special.

Pretty Old Jewels Co: If you are looking for one of a kind, vintage jewellery this is the place to go! They have so much choice and all hand picked so you or your loved ones can look fabulous at christmas!

Unbroken Smile: They do apparel for anyone wanting to support or raise awareness for chronic illness I love their designs and how inclusive they are. I always wanted something from there so if you are wondering go look I am sure you will find something wonderful.

Art tales and Magic: The art in this shop is dark and full of magic and fantasy I love the owners who are fellow you tubers and his art speaks for itself!

Mighty Moon: Last but not least, this shop has some beautiful and unique pieces that are all hand made and the girl who runs it is so lovely to chat to I would definitely recommend!

So there you have it, my favourite unique shops online to buy original designs that will leave you wondering what to give as a gift and what to keep for yourself! I hope you enjoyed this gift guide and will let me know if you buy any presents from these shops

Namaste xxx

Looking back as I look forward

Blooming Mindfulness

Photo by Marina Khrapova on Unsplash
[IMG Picture shows the name of the blog in orange above a picture of a woman looking out of an open window and below that is the title of the blog]

Hey everybody!

First of all I owe you an apology last week was a bit crazy and instead of pushing out a not so good post I thought I would look after myself and have a week off. However, here you are so maybe I should explain that I have been going through a lot of self-discovery recently and because of this I find myself looking back as I look forward.

Last Friday was so exciting I went to the Mind Body and Spirit festival which was held at the NEC in Birmingham. It is not too far from me and I was lucky enough that one of my friends Josh and his Mom fancied having a day out there too. I  used my wheelchair and Josh was kind enough to push me, there was a lot of walking at the event so I couldn’t have done it!

It was also a very overwhelming event, there were of course a lot of crystals there but also everyone was open and the energy really affected me and Josh. Not in a bad way we could just feel a lot even with grounding and protecting before the event which I dread to think how it would have been if we hadn’t! The day went by so fast and to be honest I did not buy much or look closely at much because I felt overwhelmed by it all. That said it was a wonderful day out with one of my close friends and I would go again now I know what to expect.

It has taken me a couple of days to recover of course, but that was good, it gave me time to think and to come to terms with something I only found out last week! I went to see my GP to see if there was a plan after being diagnosed with ankylosing spondylitis and Ehlers Danlos syndrome (EDS) in April.

My doctor looked at my records and found the letter from the specialist and that was when she told me that I have always had EDS and in fact it is the fact that I have been overstretching and misusing my joints for so long it is actually the EDS that triggered my Fibromyalgia. I did a You Tube video about how this made me feel and where my head has been at since I got this information:

I think I needed a little time to understand what this news meant and how I was going to process it, I mean it makes sense but still the EDS is such a new diagnosis I wasn’t sure how to take it. Now I cannot help but be thankful for good friends who stand by me and my wonderful husband who is always there for me no matter what, I am so so lucky!!

Moving forward my attention is going to the EDS, on protecting my joints and looking after myself I will be working closely with my physiotherapist to get my body stronger and hopefully by using my joints correctly and doing gentle daily exercise. I do most of that using You Tube and if you ever wonder what sort of things I do it depends on how I am feeling on the day but it is always something from this playlist.

I have also learned how to subtitle my videos and it means creating a video takes much longer but it is so worth it when I now know it is as accessible as I can make them. I will hopefully be working slowly through my older videos to get them subtitles but if anyone would be up for helping please just email me for information as to how I need all the help I can get!

Namaste xxx

When pain gets in the way

Picture is the name of the blog at the top, below that is a picture of a woman lying in bed with her hair messy and her arm covering her face. Below that is the title of the post

Photo by Yuris Alhumaydy on Unsplash

Hey everybody!

Sometimes chronic pain can get to a point where it is getting in the way of the life you want to live. I have dreams and things I want to achieve, but it is starting to feel as if my pain and fatigue are getting in the way.

I have a video I am putting up on my You Tube channel that kind of hits on this point, but basically it is that my spine pain gets so bad by early evening that I want to just go to bed and lie flat. I cannot think straight and to be honest I just feel like rubbish! Remembering the things I need to remember for my psychic course is becoming so difficult and I guess I am worried my illnesses are going to hold me back?

I guess I could be being silly, but it does feel a lot like I am letting myself down does that make sense? I mean should I be pushing through the pain and fatigue? I try my best to so that I can do a little housework and my physio exercises I mean it isn’t as if I get to do much already because of my fatigue and pain you know?

On top of that I still have not been able to see my doctor after getting two new diagnosis! It is frustrating to not be able to see the people who are meant to take care of me you know? I really need my medications reviewing because I have not had them looked at for a while but whenever we call to make an appointment I am either told there are none or given one with the nurse. I was a nurse so I know that she cannot make decisions like changing medications for long term conditions so I want to see my doctor!

Then two weeks ago I was given an appointment at the doctors in our village, it is like five minutes from us and everyone was nice and the doctor was so lovely and helpful and seemed knowledgeable. So now me and Lee are wondering if we should change to that doctor surgery so I can get some better care. After all, my current doctor did say Fibromyalgia was just a ‘dumping diagnosis’ they give when they don’t know what is wrong.

I hope this post makes some sense, and maybe if you can read passed my brain fog and pain addled brain then you could leave me some ideas of how to keep my body going when I am in pain and want to be in bed, thank you.

Namaste xxx

Body Positivity and Disability

Picture shows the title of the blog, with someone sat in meditation position but you can only see one leg and arm as the hand rests on the knee and there are white flowers sprinkled all over them with the title of the post written below

Photo by Chris Jarvis on Unsplash

Hey everybody!

The summer is here and I am wearing a lovely skirt and a pretty vest top and I should be feeling happy but I am feeling self conscious. I suffered with eating disorders, I look in the mirror and I only see my flabby arms and my tummy that is thin but not at all toned and it makes me feel so deflated. I used to be extremely thin and toned and now my illnesses have worsened and I am struggling to feel any body positivity with my disability!

I see all the adverts with the models with perfect bodies, I watch the you tubers working out in Hollywood; and I feel that pressure on me to eat everything with avocados and to work out in the gym every day! However, I have new diagnoses that mean my neck needs to be protected more and my joined are more prone to dislocation so yoga the way I used to do it has been taken off the table.

Honestly, since I was told this I have found my fitness level has seriously worsened and my body is not as toned and really my pain and fatigue have worsened! To me doing daily yoga is important but I feel a little lost as to how to practice and how to increase my fitness without doing harm.

Now obviously people are probably going to chime in with ‘get a fitness trainer’ however the fact that I can rarely leave the house and the cost that is really not an option. I am kind of left with the option of you tube which is what I have been using but I feel like I am starting all over again and the motivation when my fatigue levels are where they are now and with my pain is so hard to find! I would love to just go for a simple walk, but the weather is hot here right now and I keep having dizzy spells so that is not much of an option for me to do I wouldn’t want to have a fall out on my own!

So am I left looking in the mirror feeling like my outside doesn’t match my inside? That I am doomed to not being able to feel healthy and sexy because I have chronic illnesses? Do you guys think this is what I should just accept or is there another way that I have yet to see or hear about? I would love some input so please leave me a comment, drop me an email, or hit me up on instagram honestly I need some help not feeling like Buddha every time I look at my tummy!

Namaste xxx

PS. I have been nominated in the WEGO Health Awards for my you tube channel and would love it if you would please click below and consider endorsing me thank you x

 

 

Dealing with Loneliness in Summer

Picture is the name of the blog with a photograph of a woman sitting facing away in a field watching the sunset with the title of the blog post below

Photo by Edu Grande on Unsplash

Hey everybody!

Here in England we are having a heatwave, social media is full of people spending time with friends, and almost every night I can hear the sounds of BBQs! Usually this is a time when people get together, and because of this I think my loneliness is making itself known.

As you all know, I am working on myself very hard at the moment, meditating like mad and I am currently reading the bhagavad gita. I am trying my hardest to grow and learn and to come to be content in the moment and with the life I have instead of wanting and yearning for what others have. To be honest, I am changing a lot and I can feel how meditation and mindfulness is really helping my depression and anxiety. I am really proud of myself, but I know I still have a lot to learn but regular readers will know I love to learn new things.

However, I am mainly housebound, and with the heat I cannot take the dog out because I keep having dizzy spells. Just a few days ago my husband took me out for a drive in the car and a short walk and that was the first time I had left the house in nine days! This realisation really showed me that I am so very isolated in a lot of ways by society and that really makes me sad.

Last week, on the blog, I talked about how we all need to be kinder to one another and look out for people around us who need us. I wanted to try and encourage everyone to make sure the neighbours and family members around us are OK, but that is lacking in my life. I see people around me who don’t live far having fun and I need to be honest and say it makes me feel really left out and alone.

I have the most wonderful husband who is home as much as he can be, but he is out of the house 12 hours a day to travel to his job and work an 8 hour shift. This means most of my time is spent alone just me and the dog, who strangely enough keeps me sane. Now I would love it if my husband could be home all the time, but right now that is not really an option. So most of my waking life is spent alone, and I am sure that I am not the only one in the chronic illness community.

Now while doing research on loneliness I found that The Red Cross is running a Get Help with Loneliness Campaign because they have seen how being alone too much can affect a person’s mental health. I checked but there is nothing available in my area, but maybe there is where you live? If you are able to you can also volunteer just a few hours a week to spend with people like me who face loneliness and isolation from society. Let me know below if it is something you would use or if you would like to volunteer with them all the information is on the page above.

Namaste xxx

 

Let’s talk about fostering a world community

Picture is the name of the blog written above a picture of a barred window with the words Support Community written around it. Below this picture is written the blog title

Photo by Mathew Schwartz on Unsplash

Hey everybody!

So I have been thinking about this a lot, how can we improve our community and why it seems so fractured. This post was spurred on to be written though by Melissa at Mint Tea and Elephants, we were talking in a facebook group and I mentioned some of my thoughts and she said she would love to read it, so blame her haha!

I am not a news watcher, I stopped watching the news years ago because it always triggered my anxiety. I started to worry about the end of the world, what if zombies became real if we act like this now? Why do people get so lost that they commit crimes and turn to drugs and alcohol? Why is it that a few people seem to prosper while everyone else seems to think it is OK to just struggle alone and to turn down any help offered and not help others?

Just a few generations ago people did not travel far from where they were born, they grew up knowing everyone and helping one another when needed. We seem to have everything, with kids having mobile phones and iPad at young ages and yet children struggling with suicidal thoughts is on the rise! The more I think about it the more I wonder that it could be we are losing that community spirit we used to have. In the past people in a street would share the big ticket items like lawn mowers and TVs, Just think how many lawn mowers there are in just the street you live in and how often they are used!

Humans naturally are pack animals, we naturally long for approval and to fit in so that we will survive. It is a natural instinct, but it seems to have taken a turn, instead of trying to help the people in our street we are looking on Instagram, comparing ourselves to others and getting depressed when our lives don’t look like that! I often see people on social media saying they need to take a ‘mental health break’ from social media, it is as if living with comparing and jealousy is unhealthy for us.

I know I have fallen into this trap when it comes to this when it comes to my You Tube Channel and this blog, I see others making money at them, being shared and growing their subscribers and it can make me feel jealous. I think this mentality of numbers within the ‘influencer’ community is what can cause most of the problems. So I took a step back and realised that I was feeling upset that I share people’s blog posts and videos but they were not doing the same for me….

But should that be why I do it? Surely I should practice my beliefs and put them into my life in every way not just when it suits me! I try to practice the four types of yoga every day, and one of them Karma Yoga is what this is all about. Karma Yoga is the path of unselfish action, this means doing things to help others and to raise others up without expecting anything in return. I should do it because I want those around me to succeed, and not because I want them to do the same or I think because I shared that video my views and subscribers will rise!

Now just imagine if we all practice this, no matter your faith, what if we all did nice and kind things not expecting anything in return not even a thank you? Do you think if we all changed our hearts to try this that we would all get more success and be happier because I do! So I am challenging you to do these three things and let’s change the world and foster a little more community:

  1. Smile at a stranger
  2. Be kind expecting nothing in return
  3. Share blog posts you read, and you tube videos you watch

Below is my You Tube video where I discuss this and yeah I hope you will leave me a comment and let’s get talking

Namaste xxx

 

Pushing passed anxiety

Photo by Alexander Lam on Unsplash

Hey everybody!

So lets talk about pushing passed anxiety to make your dreams happen and move forward in life. It is something I have been needing to do I have things I want to achieve in life and my anxiety always holds me back and this time I did not let it win!

So I am also a You Tuber and a few weeks ago I messaged one of my favourite You Tubers, Miss Mary Lu and asked her if she wanted to do a video together. I was so excited when she said yes because she is such a wicked cool person and she is someone I look up to because she has more subscribers than me.

However, as the time to upload came up I got scared, I started to doubt myself because my channel is slow growing, I am shy in person and I am not great at promoting myself. So I started to feel like I would look stupid or nobody would want to watch because my editing and lighting etc is not great and yeah it got me doubting myself so much.

BUT!!! Yes there is a but, because I took my time and I kept thinking about it being such a great opportunity and I would regret it if I backed out because of my anxiety. Today the video I posted went live HERE and I am so proud that I pushed through and I have already learned so much from this collaboration and I know that the more I push myself through then the more I will achieve.

My anxiety almost keeps me captive in life and I cannot stand that! I want to be a good blogger, and I want to do well on you tube and help people understand chronic illness and that we are just people living our lives and trying our best just like everyone. So this was a big week and it was hard for me, I realised how much I need to learn and grow and at first it got me down but then I realised that I have only been editing 8 months, I need to be patient with myself and kind to myself.

Now the video is out I am so proud of myself I love what me and Mary produced together and I hope it encourages everyone to go and try new things, and to take care of themselves. Self care is so important it helps both our physical and mental health so let me know down below is anxiety holding you back? And, what is your favourite self care?

Namaste xxx

Making a fresh start after a depression flare

Photo by Jeremy Bishop on Unsplash

Hey everybody!

Last month was pretty hard for me, I lost my grandmother and I turned 40…yeah I did not appreciate that!

I got a little lost in everything, grief kind of took over and I stopped doing a lot of the things that I love. I stopped practising yoga, I stopped eating three meals a day, I stopped looking after myself and I was miserable! I was feeling overwhelmed with grief and I kind of shut down because I couldn’t process everything that happened in such a short space of time.

I was starting to think that would never clear away and that I would be stuck with my depression at a new higher level. I was considering going back to my doctor to get my antidepressants raised, but I am very disillusioned with doctors right now. I have been depressed since I was 14years old, and I have had fibromyalgia and ME since I was in my early twenties and nothing has changed doctors still just throw tablets at me instead of trying to find out why I hurt and how to treat that…but I digress!

So I was thinking of making an appointment and then April came along…

This month felt different, I started reading again, and I got hold of a copy of Medical Medium, I also finished the Heal Chronic Fatigue course I have been doing since January 1st and you can see my videos about that here. The course really started my interest in alternatives to western medicine and I am enjoying the journey that I have started on. I honestly think looking into nutrition and natural remedies might be the way forward to getting some relief.

So now my depression flare has lifted I feel like I can get back to things again, updating this blog weekly, and my You Tube channel twice a week. I did yoga this morning and managed to dust the living room, and though I am sore and tired I feel accomplished. It feels good to do the things that make me happy again and though I know this new way of looking at my illnesses will take time and research and I need to be patient with myself, but I am excited!

So let me know in the comments any tips and tricks or books I should read? I am going to be documenting this journey as I go both here and over on my You Tube so make sure you are subscribed to both so you don’t miss out when I update.

Namaste xxx

My changing relationship with yoga

My attitude to Yoga has changed, finally I am listening to my body and reaping the rewards

Photo by Dingzeyu Li on Unsplash

Hey everybody!

First of all I apologise for not writing a post last week! There was supposed to be someone to come and assess me for PIP the new disability benefit in the UK. I was so stressed it made my pain worse, and so I was struggling with so much…and then on top of that they just did not show up and did not call to explain! I have another appointment but I am not looking forward to all the stress it will bring. Anyway, yes that is why I did not post anything last week, I apologise.

So, I have been practising yoga now for about six years and for most of that time I have done it daily using the teacher Yoga with Adriene I have spoken about her many times. She is an amazing teacher and I love her style, however her videos are not aimed at the Spoonie community and so it can be difficult to keep up.

I often found that I had to choose whether to do yoga or some housework and practising daily was impossible. I love yoga and I want to do it daily it is my main form of exercise, it keeps my body supple and helps me to be in the moment. I use it as part of my religion as I am Christian Buddist and so I really wanted to find a gentle practice that I could do every day and it would not make me too tired.

Then Adriene uploaded a ‘Yin yoga’ routine which is a form of yoga I had not heard of before:

“Yin yoga is a slow-paced style of yoga with postures, or asanas, that are held for longer periods of time—for beginners, it may range from 45 seconds to two minutes; more advanced practitioners may stay in one asana for five minutes or more.”

I really enjoyed it and though it is not what people picture when they think of yoga I really got so much out of it because it moved my body but was gentle and did not tire me out….so I started hunting for different yoga teachers on You Tube who practiced more gentle routines that could help me to listen to my body more and not make my illnesses worse.

I found a couple of teachers so far, Sleepy Santosha is a woman who is a Spoonie and because of that her routines are designed for people with illnesses. She has a very soothing style, the routines are awesome and she has some specifically for Chronic Fatigue Syndrome and Fibromyalgia. Chakrapod is the another teacher who has routines for specific illnesses but also some that are a little tougher and more traditional, I love her style she is really chill and I would recommend her. I have some others as well and you can find the exercise routines I do in a playlist HERE

Overall, this change has bought me closer to what yoga is really about, it is not about getting abs and doing crazy poses that you can show off! Yoga is anything where you are concentrated on breath and movement, and there are lots of yoga routines you can actually do in bed. This change in my attitude to yoga means I can now do yoga every day and I can still manage a little housework, my symptoms are more level and do not fluctuate as much as they were when I was trying to push myself.

Do you have any yoga teachers like this that you would recommend? If you try any of the yoga routines in my list let me know I would love to know what you think of them.

Namaste xxx

Hello

Hi there I am Beverley, I am trying to find a way to live with Fibromyalgia, Chronic Fatigue, Ehlers Danlos Syndrome, ankylosing spondylitis, Depression and General Anxiety Disorder. I live with my Husband Lee and our dog Gizmo and our budgies Rey and Finn. I live in England and I am learning to be a psychic and I am on a spiritual journey I am excited to share with you. I look forward to getting to know you better, I will be updating Mondays and Fridays xx

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