Trying to live with Chronic Illness

positivity

When fatigue reminds me to slow down

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Hey everybody

There really are times when the universe teaches us lessons in unexpected ways, like when fatigue reminds me to slow down. For my whole life I have been focused on achieving my dreams and I always have lists and goals of things I want to do every day. I use an app called Planner Pro it is on my iPad and every day I list about 4-5 things I want to get done that day.

I always have my time with God which is when I meditate and pray and I always do some form of yoga and my physiotherapy exercises. On top of that I try to do a little housework and then some work online if I have enough energy and my body allows me!

And there is the problem, my body never lets me and for a while I have been pressuring myself to get everything done by a certain time. It is like I want to prove to myself that I can still be of use to society and it is really stupid when I hear it in my head now as I write this! The problem is society judges everyone by the job they do!

This recently came to the front of things when Geoffrey Owens, who was a star of The Cosby Show, was photographed bagging groceries in a supermarket. Pictures were published of him with the hope of shaming him, which they did for a little while. But then people started talking about how someone working to help their family is a good thing and he even said that whatever job a person has shouldn’t matter because every job has it’s worth and he is right…but what if you are too sick to work?

I don’t know, it kind of feels like we fall through the gaps of society and that really does not sit right with me. I was pressuring myself to be included and to be taken seriously, I mean I always wanted to be a housewife and have a child but I am not a mother and most days I cannot manage to do housework so what am I? Do I matter? These are the worries that kept me pushing myself to get all my jobs done by 5pm and not resting enough.

So the last few days my pain and fatigue have been through the roof and resting, and I have had to slow down but the thing is slowing down aligns much more with my beliefs than trying to fit in with society. I love yoga, mindfulness and taking time to appreciate the moment and what my body and soul needs. So strangely, this fatigue flare has made me slow down and take a breath and change the way I think, when I realised I was doing things wrong I was so thankful to the universe for showing me my mistakes. I needed that reminder, have you ever had something like this happen?

Namaste xxx

 

Fighting for contentment

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Hey everybody!

First of all I am very sorry I did not write a blog post last week, you will soon hear why so I hope you will forgive me. Big things can happen, but we can all cope with much more than we think we can and I have been fighting for contentment while going through something scary.

About a month ago I found a small lump in my armpit, I regularly check my breasts and armpits because you just never know. I was sure this was simply a cyst or something like an enlarged lymph node or something like that. I went to see my practice nurse who, after feeling it and checking my breasts herself, decided I should go to the breast clinic. So right then I went from sure it was just a cyst to worried it could be cancer or something to be worried about.

My anxiety went through the roof as you can probably imagine, thankfully my husband got the day off work to take me and we only had to wait a couple of weeks to be seen. The clinic was so well set up, I saw the consultant, had an ultrasound and both breasts checked by a mammogram in just a couple of hours! They even had beautiful lit up photography to look at while being scanned it was brilliant and I got a glimpse at how the NHS could work.

The problem of course, as most of us chronic illness warriors know, is that for the most part this is not how the NHS works! Most of the time you wait years to even be taken seriously, then you have to constantly explain and prove that you need tests or scans even when you are in so much daily pain and fatigue it is hard to even get out of bed!

I think if I went to see my rheumatologist and he saw me in a couple of weeks and everything you needed was done in one go and you got the answers right away then we would all have much more faith in our medical teams. I came home from my day being scanned, poked and prodded feeling overwhelmed with happiness that my lump was nothing sinister, and really annoyed that cancer gets this sort of treatment while every other illness is met with proving you are not faking…even when I needed my gallbladder removed it took three emergency room visits over a couple of months for me to even be referred to the right specialist!

So I am sat here feeling a little annoyed, not that cancer gets the treatment it does because it needs quick response, but that the rest of the illnesses get put to the back of the line. Since going to that clinic I have been struggling to keep my contentment and to not fall back into depression and frustration. It would be easier to give in, instead I have been turning to crystals, prayer and essential oils to try and keep my mind from being lost to the darkness.

I have struggled with depression for most of my life, but I refuse to let being shown how good medical care can be get me down. No matter what illness we are battling we deserve to be taken seriously from the start and to expect good pain relief and not to have to explain ourselves over and over again! You are just as important as the next person, and you as well as I deserve to find contentment even when we suffer with chronic illness.

Namaste xxx

Body Positivity and Disability

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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

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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

 

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

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

 

Four things to be thankful for today

Hey everybody!

Life is stressful, and we can often focus on the negative. Perhaps because of health issues, problems with work, or any event that gets in the way of our happiness, we can take on this ‘glass half empty mentality.’ Instead, we should practice gratitude. Finding ways to stay positive instead of dwelling on the difficulties in life, we should be able to rise above our stresses and think and feel better as a result. It’s not easy, we know, but when you stop and think about it, there is so much to be thankful for. The following are some of our examples, but you may be able to think of more.

  1. Be thankful for your parents

Our parents aren’t perfect, but then nobody is. Be thankful for what they have taught you, and for the love and care they have shown you in your life. Be sure to tell them too. They won’t be here forever, so before they enter into a care home and leave this mortal coil, tell them you love them, appreciate them, and are thankful for them. Hopefully, your children will do the same to you one day.

  1. Be thankful for the small things

These are the things we often overlook in the day, but sometimes we should slow down and take notice of them. Examples? Be thankful for the sun and the rain; be thankful for the water from your tap and the other things we often take for granted; be thankful for the daily sounds you hear, from birdsong to the laughter in your child; be thankful for the things that make you smile. Your day is packed with these things, so stop and pause at each and offer thanks for every one.

  1. Be thankful for life’s challenges

Admittedly, this is the toughest of them all. How can you be thankful for those things that give you stress and a headache? How can you be thankful for the things that could negatively impact your day? It’s not easy, but then you shouldn’t let them get you down, either. Look at these challenges as things that will help you grow. You have dealt with your challenges before, and you will do so again. Sometimes, the obstacles in our life are there for a reason, but by rising above them, you will become a better person. Get help when you need it, of course, but be thankful for those times when you have developed as a result of your hardships.

  1. Be thankful for your life

God brought you into this life for a purpose, so be thankful to Him. Be thankful for the good things you have done, and the opportunities you have been given. Be thankful for your strengths as well as your weaknesses, as you aren’t supposed to be perfect. Be thankful for what has happened in your life, what is happening today, and what is still to come. You only have one life on this earth, and it’s a precious one. So give thanks today for you!

Keep the thanks coming

There is so much to be thankful for; we need only stop and consider the blessings we have in our life. What about you? Is there anything we have missed? What are you thankful for? Let us know – we will be thankful if you do!

Namaste xxx

Contributed post

Finding New Inspiration

Picture of person waking in sand dunes with the title of the blog and article

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Hey everybody!

Isn’t it funny how sometimes you take a little break and it totally refreshes you? I have had a daily relationship with God all my life, I have always tried to understand Him and where I stand and for the most part that has been done through prayer. However, after discovering Buddhism a few years ago I have also been using meditation and mindfulness…hence the name of this blog!

However, recently I have been questioning my choices when it comes to my faith and how I communicate with God. I have always believed that there is one God and all the many religions are just human’s ways of trying to understand and to find a way to show our love for them. So to me it doesn’t matter how you worship its where your heart is when you do it that matters and how you live your life.

That is my own personal view on things and though I mainly lean towards the Christian and Buddhist religions I have often questioned things and this has been happening a lot recently. If you read my blog regularly you will know I have been trying to find better ways to treat my illnesses and some of them might be controversial but life is short and I want to try everything that I can.

Now questioning, looking at things like health and religion is in my opinion very normal and human things to do, especially as if you do a quick google search on either of these things you will find millions of websites claiming to have all the answers and they all contradict one another!

So I got a little lost and I decided to take a couple of days off from researching my health, meditating and praying just to be able to step back and see the whole picture. After those days I came back to my faith with renewed sense of being on the right path and that I am going to be heading towards happiness and contentment which is after all what we all long for right? I now have a good sense of the universe and of my place in it and I have come to understand the real meaning of mind, body, spirit and how the yoga I have been practising along with meditation and prayer, and looking at nutrition can really give me the answers.

So though I have been doing the same things for a long time, I have seen them as seperate entities but by focusing on God and taking real care of myself I think I might just start to find myself moving from depression to contentment. I understand talking about faith and the universe and God might make people want to run away screaming, but I started this blog wanting to tie faith and health together, hence the title, and I lost my way a little bit.

So I am here with renewed inspiration and I am excited for the future I hope you will enjoy the journey with me and that I can help inspire you or give you ideas that will help you on your journey!

Namaste xxx

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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