Trying to live with Chronic Illness

blooming mindfulness

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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

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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

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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

 

Future plans for putting your mind at rest

The name of the blog, with a picture of someone writing in a notebook with the title of the post underneath

In truth, we all have anxious times in which we can’t see where we’re going in the future. Some of us experience these periods more seriously than others, some us of can let it slide. But when you’re sometimes seized by the fear of the future, it’s clear we need to make ourselves aware of the steps to take for contingency. These are smart and safe thoughts.

 

Maybe you’ve just gone through a particularly bad period, and now that you’re out the other side, you know you want to change some things. And there’s nothing better for doing that than putting some plans in place to make you feel better about facing tomorrow. So here’s a couple of ideas for you to use now to make the next flare up a little less serious.

 

Source

 

Making Money

 

It’s something we worry the most about: being able to support ourselves. When everything in your life (your body, your mind etc.) seem to be working against you, it can be hard to try to commit to a ‘proper’ job and make the money you need. But thankfully there’s plenty of ways to make money than ever before, and we can use that to our advantage.

 

You don’t even need a traditional job to tide you over whenever you actually can work a shift. As long as you’ve got an internet connection, you’ve got a good way to keep a flow of money coming your way: there’s so many sites out there that’ll pay you for reading, writing, taking surveys, watching videos, playing games etc. The list honestly goes on and on. And it’s something anyone of any skill level can take under their belt, as long as you’re confident enough to keep at it.

 

Making Sure We’ll Be Taken Care Of

 

Having someone around to take care of us when we can’t do it for ourselves; it’s something a lot of people can spend a few moments crying about when they properly let themselves think about it. But it doesn’t have to be such a bleak prospect, and you’re never going to be alone when you know the programs available to you. There’s always going to be someone out there who you can connect with, and in more ways than one.

 

And whilst you’re might not be looking into Nursing Home Comparison sites just quite yet, you’re still going to want to surround yourself with friends and family who love you. Humans have always been taking care of each other, so let yourself rely on your neighbor: keep their number on a sticky note and call them over when you need help.  

 

Know How to Take Small Steps

 

If you want to work on your social skills, learn how to write an email with perfect form. If you want to be more creative, write a paragraph about a nonsensical idea day by day. If you’re productive like this, you’re going to feel a lot better in yourself. It’s all about the small steps.

Namaste xxx

Contributed post

Feeling guilt with summer fatigue

Blog name over a picture of daises with Feeling guilt with summer fatigue written underneath

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Hey everybody!

Feeling guilt with summer fatigue is so hard, it seems to take all the motivation out of me! I am trying so hard to keep up with things but all I want to do is sleep and it is not good at all!

Here in the UK we are having something of a summer heatwave, and though I am sure a lot of people are really enjoying the sunshine and heat that we are having for a change it is very different for me. I have chronic illnesses that cause fatigue anyway, but when the sun comes out it can make my illnesses unstable and it very hard for me to keep up with the day to day tasks that I need to do.

Strong sunshine that pours through my kitchen is lovely, but if I am in there for longer than a few minutes I find myself fighting back a migraine. In fact, at the moment I have a halo of pain all around my head just threatening to hit me with a migraine at a minutes notice! I am having to use sunglasses just to get a glass of water at the moment and forget washing up where the sink overlooks the window!

Now I have been working hard recently on my mental health, on working with a therapist and with my faith to find ways of being kinder to myself. Things like mindfulness and chanting have made a huge difference to my negative thoughts and I am incredibly proud of myself. However, today I have basically slept most of it away and I feel like I have wasted a precious day I could have done some gentle yoga, maybe dusted the living room, but I have done nothing but watch Great British Bake Off like a Zombie!

Guilt is something everyone with chronic illnesses deal with, either it is pressure we put on ourselves or it is family or friends making comments. The pressure in society to be productive and to work, work, work is why most people now are coping with mental health issues I know this logically but when I am alone I still hear that voice in my head saying I should be doing more. I do hate it and I am trying so hard to be kind to myself and look after myself but I really need a little help!

I am determined to cope though because it looks like this hot weather is here to stay, and though I would love to stay inside like a hermit I have doctors and hospital appointments to get to. So I have been thinking about how best to stay cool and here are some of my ideas:

  1. Drink more water – might seem obvious but as it is hot I need to up my fluids intake and make sure I don’t get dehydrated
  2. Listen to my body – I need to slow down everything I do, I am not the fastest anyway, but I need to sit down more and make sure to listen when I need to rest
  3. Wear sunglasses – Yes even if I need them indoors it shouldn’t matter, I have to protect myself from migraines and keeping my eyes from being blasted by this bright sunshine is a great start
  4. Make sure to wear suncream if going outside – Many medications can make us more sensitive to the sun, but also I am mainly housebound so I need to remember I am not used to the sun and will burn easily
  5. Be patient – even people who are well are struggling in this heat so why do I think I won’t? I need to remember that and be patient with my body.

So wish me luck in working on the guilt that comes with not being able to help around the house, and if you have any tips and tricks for coping with this heat let me know down below?

Namaste xxx

A change is as good as a rest

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Hey everybody!

Well we have had quite the eventful week and I really thought it would leave me with a lacking in spoons and increased pain and overall feeling dreadful…I am still waiting for the bump! I guess a change is as good as a rest?

Not that my fatigue and pain are not increased, of course they are I still have the same illnesses. However, it is my mood that is different and my outlook, I find myself quite happy to rest instead of feeling like a useless lump and to be honest it is so shocking to me I have to talk about it!

Earlier this week we had a decorator come for three days to wallpaper and pain our hallway, it is now pink with birds all over it and I love it! It has made the hallway so welcoming and warm and it is so cheerful I just love looking up to see it. I will be honest though, having someone in the house did make my anxiety really high, but I managed to make small talk and felt really proud of myself.

I took the week off the computer, I rested and I even went to a Hindu meditation class where they introduced us the the different forms of yoga and it was really inspiring. I loved hearing about the Bhagavad Gita and how to apply it to my life it really helped me to feel grounded with my spiritual journey.

I am enjoying the journey and I am trying so hard to use the things I am learning, like chanting, meditation etc to battle my anxiety as well as feeling God around me much more. I am also really finding myself feeling more in control of my thoughts for the first time in a long time, and I feel actually happy…a strange feeling that I am really not used to and not quite sure how to deal with, which is kind of sad! I mean surely feeling happy should be how we feel most days, but since I was a teenager I have struggled to feel actually deep down contentment, but I have always longed for it.

I have always heard the saying ‘a change is as good as a rest’ but I guess with my anxiety disorder I always shied away from change and in fact usually it makes me lose control. But right now, I feel so much love and support from Lee who is on this spiritual journey with me, and from God who I feel is actually there walking beside me in a way I never felt before. It has been a difficult week I cannot lie about that, it is hard to be open to new things when most of the time the thought of going outside alone gives me a panic attack.

However, here we are, it is Monday and I am sat writing this to my friends and I am smiling! I know it is crazy to imagine because my upper back and neck are very painful and I feel tired but yeah I am smiling. I am incredibly proud of myself for facing these changes with faith and being as open to them as was safe for me. My husband was right by my side every day that the decorator was here, though he did not sit with me and left me alone so I could talk if I wanted to. He also went to the meditation class which I was so thankful for and I felt so supported and loved.

I hope if you all have change to face you can push passed the things that hold you back and keep moving forward so that you can make your dreams and passions a reality. Ill health does make it hard to be happy especially mental health issues, but finding faith, in God, a medication or a person then you can conquer the world!

Namaste xxx

 

Opening up to more

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Hey everyone!

A few days ago I went back to see my psychic again, she is so lovely and she answered everything I needed to know. If you didn’t know I am learning to be a psychic myself and to watch her work now after training and learning was so incredible. Angela is so talented and she really inspired me to keep working because my future is a lot brighter if I use my skills and keep opening up to the world.

When I look back to when I first became sick and had to leave nursing, I remember thinking that’s it then. I tried other jobs but nobody seemed interested in helping me stay employed and I kept losing jobs because I couldn’t remember things and I struggled to move fast enough. Eventually, I gave up trying and realised I was better staying home and trying to keep my body as healthy and keep it going as long as I could. Work was taking valuable energy and causing pain, it made no sense to keep trying just to be told it was not good enough.

Thankfully, jobs are not allowed to do that now and I hope that people coming up behind me are being treated better…yeah I can hope!

When I saw Angela though she spoke of my future in such a wonderful way, she answered my questions about being on the right path and she spoke about me and my husband possibly working together. She said I could help a lot of people if I apply myself and really learn all I can, I came away feeling as if she had once again opened up the universe before me. Now that might seem romanticised and silly, but after giving up and thinking I was never going to be useful to society, well that really inspired me and that is exactly how it felt.

I have been finding my world slowly opening back up over the last few years as I have begun a spiritual journey, started taking this blog more seriously, and started working on learning all I can about my psychic abilities. I have a lot of faith in God, I always have, and I know in the bible it says He has a path worked out for every one of us. For a while I forgot about that and lost sight of the fact that my soul need to flourish and grow in order to move forward.

I also was contacted last week to say that this blog was selected by Feedspot as one of the Top 10 UK Fibromyalgia Blogs on the web which of course is incredibly inspiring to keep going and really boosted my confidence. You can check out the list and find other good Fibromyalgia blogs HERE.

So I see the world, the universe, well everything opening up before me, I feel excited and inspired by what could be in my future and I hope everyone out there realises our lives are full of unlimited possibilities if we just trust.

Namaste xxx

Is meditation and chanting changing my brain?

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Hey everybody!

Well I am starting to feel more like myself and less like someone who just wants to curl up in a ball and do nothing and speak to nobody.

As I have spoken about many times before on here and my You Tube Channel, I suffer a lot with my mental health, namely chronic depression and generalised anxiety disorder. Both of these illnesses conspire against me to keep me inside and lonely and not doing the things I love to do.

However, over the last couple of months, me and my husband have been working hard to learn more about other cultures and other ways of thinking. Here in the West it all feels very overwhelming, there is a lack of kindness and compassion, and people tend to work work work without taking the time to look after themselves properly. Both me and especially Lee had fallen into that trap and we had enough!

Lee started learning about The Secret, and I found out about The Power of I Am and looking more into other religions that are as old as Buddhism which I have been studying for a while now. The realisation that if I put in the work I could be in control of my thoughts and take some control back became something that I greatly wanted to make happen.

After finding a course on the Insight Timer App, I started to learn about Bhakti Yoga, which is a spiritual practice within Hinduism, that concentrates on devotion and love for any endeavour. I found this so beautiful, and started to take mindfulness, gratitude and meditation more seriously. I also discovered chanting could help me stay in the moment and provide short mantras such as I am safe I am protected, which definitely calm my anxiety! As soon as I changed my thinking from what I want and what other people do to gratitude for what I have my whole demeanour changed! I woke up happy, something that has not happened since I was about 14years old! I started to be thankful for the home I live in and to see what I already had instead of focusing on what I wanted to change.

I also found that old emotions and feelings came up that I had stifled years ago, but by chanting or praying through it I found that I coped much better with them. It became so interesting to me that just changing my way of thinking could change things so quickly, I wondered if there was any scientific basis to think that my brain had changed. I found that there were articles about this, but many were not scientifically based which annoyed me because I am experiencing the change surely it can be measured somehow?

I did find this one study on sciencedirect.com which basically confirms what I am feeling and seeing myself, unfortunately the study was only done on small groups. However, it did help me feel like this could be a long term change and not just something that will last a couple of months and then stop working…I mean people have been using these tools for hundreds of years they must have an idea it works right?

Namaste xxx

Pushing passed anxiety

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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

Taking my time coming to terms with new diagnosis

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Hey everybody!

So a few weeks ago I was told I had two illnesses and you can read about them HERE, so I have just taken myself a little time to come to terms with them. On the one hand, Spondylosis was not a big shock I have been having a lot of upper spine pain and now I know what it is I am happy. I mean well, not happy happy, but now I know what it is I can look up things to help and get practical about things if that makes sense?

But with hEDS, I am finding a lot of anger and frustration because as I research and read up on this illness the more upset I am feeling. I am finding my being diagnosed fell at the right time because I found out at the beginning of EDS awareness month so there is no shortage of informative articles floating around like this one by the Mighty, or this one by Mystripeylife.com which I am extremely thankful for!

However, the more I read the more angry and frustrated I feel, and I think it is because I have so many of the symptoms and I find out decades after and I want to go shout at my old Drs “I TOLD YOU IT WAS REAL!” I didn’t walk until I was almost two and would drag my left leg when I crawled, my skin is very soft to touch and I bruise very easily, I was in so much pain as a child but when I went to the Dr they would tell me it was simply ‘growing pains’, I have always had balance issues, I had to have a lot of dental work and teeth removed as a child and the anaesthetic never worked as well as it should have…and I can go on!

Knowing I suffered so much to have nobody listen, to know that I just pushed through and forced myself to act like I was fine for so long ignoring the pain it upsets me. But what upsets me the most, is that younger me thought I was being dramatic or I was too sensitive everyone else gets by with these things! On top of that, I had family members make fun of me, and put me down because they did not believe me or understand that it was real…they believed the doctors they thought it was in my head.

Now I don’t want you thinking I blame those members of my family, because I don’t, they were simply misinformed and trusted doctors and dentists who themselves did not see the whole picture. General practitioners can often miss rare illnesses because they don’t get the time and there are so many rare illnesses there is no way for them to know them all. Logically I know this, logically I am thankful to now have answers and to have a way to move forward with greater understanding hopefully from the medical professionals I meet in future.

Yes I think it is legitimate to feel anger and frustration when you find this sort of information out, I need to be patient I need to allow myself time to feel these things. But, as I am a Christian and a Buddhist, I try to refrain from looking back too much and to be in the moment so I guess what I am saying is that from now on I will be updating my blog every Monday again! I gave myself time and I was patient, but this blog means so much to me, like my You Tube channel, it gives me a voice, it is a chance to connect with others and make friends.

So I guess I am incredibly thankful to people in the EDS community for welcoming me, answering my questions and giving me advice when I have asked. I feel so lucky my diagnosis came at the start of the EDS awareness month I am thankful I have a diagnosis that finally makes everything make sense…so yes anger and frustration is there but I am choosing to look at things with a grateful heart.

Namaste xxx

 

Health Update

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Hi everybody,

So as I sit here writing this I honestly don’t know how I feel about having two new illnesses diagnosed. On one hand it is great to have some answers and to have a plan, but on the other I wanted it to be something they could cure you know? However, I wanted to give you all a health update because I feel like you guys know so much that I need to get this out there.

So over the last few months I have seen a headache clinic, and had MRI scans, and seen two rheumatologists. On Wednesday I went to see a new physiotherapist who confirmed that the consultant thought I had a type of arthritis called Spondylitis in my upper spine and neck which is why I get so much pain and stiffness.

She also told me that I have a form of Ehlos Danlos Syndrome called hyper-mobility EDS and will need long term physiotherapy and occupational therapy in order to keep my joints working. I potentially will need a brace for my one thumb and she explained that as long as I work on improving my muscle I should see improvement in the stability of my joints.

I came home feeling overwhelmed and since then my depression has dipped a little and I don’t think it is because of the diagnosis. I mean it is a good thing to know I will be looked after long term, though not by a rheumatologist by the physiotherapist. I don’t know why it has shaken my depression up a bit, I guess it is just a lot to take in to know that I am going to have this pain and these are potentially both illnesses that can get worse.

I think for right now the thing that has upset me the most, is that I cannot do the type of yoga I love or go to yoga class anymore because it will not help my joints. I am feeling down about that, but I will still be doing yoga with Sleepy Santosha on You Tube so that is a good thing! I am determined not to let this news get to me too much so I have things planned to try and keep my spirits up, like getting my hair cut tomorrow and going to my friend’s murder mystery party next week!

So there we are, now you know why I have been a little like a hermit but I am going to be moving forward with a lot of gentle exercise, and working on improving my diet so I can be as healthy as this body allows!

Namaste xxx

 

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Hello

Hi there I am Beverley, I am a Buddhist Christian trying to find a way to live with Fibromyalgia, Chronic Fatigue Syndrome, Ehlers Danlos Syndrome, 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 look forward to getting to know you better. I will be updating once a week, usually a Monday.

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