Trying to live with Chronic Illness

mental health

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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

 

Fatigue and Netflix addiction

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Hey everybody,

How are you all this week? I do hope that the change in weather is not affecting you all too much? I wish I could say the same, but my fatigue has flared and because of it I have become addicted to the TV show Gilmore Girls which I didn’t watch the first time and must be mad because it is wonderful!

You know it is kinda strange but fatigue is something that I have had for so long I have my ways to battle it and work around it. I have patterns and routines that I have developed over time so that I can usually keep up with life in my own way around the fatigue. However, this last week it flared and I spent many days sleeping in and getting out of bed after 4pm.

This had left me feeling lost and well frankly bored! I sometimes think that when there is a full wishlist of things ready to watch it can be almost impossible to choose something. I think I must have started and stopped a few different shows and movies before changing my mind. So when Netflix, who knows me better than my own mother, suggested Gilmore Girls I thought hey why not?

Now I am a huge fan of 1990’s TV shows so once I started watching I became addicted, it really helped me to not get depressed. Usually when I have times like this, I lay there feeling awful because I cannot keep up on my housework and I start feeling like a failure. But, with this whole new show and all the episodes to watch I didn’t have those thoughts at all.

I guess what I am saying is, it is sometimes the strangest things that can get us through the tough times that chronic illness serves us from time to time. So here I am already on season 5 and loving the music and the fashion and feeling very sentimental, TV shows were just so much more fluffy and light then you know? I mean I do love the influx of Sci-fi and horror shows that seem to be constantly on TV now, but when I am feeling more fatigue than usual I really want something that will give me the warm and fuzzies and I definitely recommend Gilmore Girls.

So what TV shows do you watch when fatigue hits and you need the fuzzies?

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

Frustration and studying with chronic illness

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Hey everybody!

If you have been following my you tube channel, then you will know that I am currently studying to become a psychic. I have found as the course has progressed however that my chronic illnesses are holding me back and it is so frustrating!

My chronic illnesses are Fibromyalgia, Chronic Fatigue Syndrome, Ehlers Danlos Syndrome, Spondylosis, depression and generalised anxiety disorder. They work together to make my life interesting by not only affecting how mobile I am, but also making my memory bad, giving me fatigue, shaking, numbness…the list goes on.

I have suffered with many of these my whole life but they started to change things mainly when it came to studying. So I could never get good grades in my schoolwork and I struggled in my nursing course because a bad memory means that retaining what I am being taught can be extremely difficult.

Over time when I gave up work and stopped needing to remember facts and figures it didn’t bother me as much. However, I am extremely interested in learning how to be a psychic, I am starting to get into crystals and I am even learning about the moon phases and I am finding that nothing is sticking and it is so frustrating! On top of that I have the bonus gift that studying makes my fatigue worse so I am so so tired all the time. The extra fatigue makes it hard to balance resting with studying and my housework that I try to do a little every day but it doesn’t always work out now.

I also have problems with grounding, this is a meditation practice that protects you and you are supposed to do it every morning and every night. However, on my left side my numbness is worse, so I cannot feel the ground below me and my pendulum will not work on that side. These might not seem like big problems but they are, right now I am looking into how crystals and essential oils can help but while I look into that I find I am frustrated and struggling.

I am hopeful that as I progress it will help my illnesses, but until then have you been a student? How do you cope with the side effects that come with studying and having illnesses that will not stop? Any tips or tricks gratefully accepted.

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

 

 

Let’s talk about fostering a world community

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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

 

Feeling guilt with summer fatigue

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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

 

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

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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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