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!
My pain is flaring at the moment and I will be honest it is kind of worrying and overwhelming! I am trying to keep my chin up and keep going, I think sometimes pain and fatigue can stop us in our tracks then we find our ways of coping; So when we flare it can be difficult to find our feet again
because we are already running at a much lower pace than most people could cope with!
What is a flare?
A flare is when your symptoms get worse but it is because of something you know and you are sure it will get better, for example after going out for the day or seasonal weather changes.
“A flare is a transient worsening in severity of a disease or condition that eventually subsides or lessens. For example, in many arthritis conditions the joints can flare with worsening of stiffness, pain, and swelling” – medicinenet.com
How do I cope?
I would usually go to see my General Practitioner, but to be honest she is not very compassionate and I do not think she feels Fibromyalgia is a real illness. She also has said many times she cannot give me anything else for pain and to try paracetamol, I did have a little hope when I was referred to a pain clinic…until they wrote refusing to see me because there was nothing they could do!
So the question I ask myself at times like this is how am I going to cope? I know I cannot turn to my doctor and though I am under a long term physiotherapist, I do not have anyone overseeing my whole condition who is a hospital team or anything like that. I think that is why it feels overwhelming because I have nobody to call and ask for help, but if you have been reading my blog posts for a while, you will know I am always looking to be as positive as I can.
Here is the things that are getting me through this flare:
CBD Balm – This stuff is brilliant for putting on the exact area of pain, and right now I am using it a lot on the back of my neck where my spine is very painful.
Heating Pad – Every chronic illness warrior knows that if you have a good heating pad you can use it to help pain so much. You can pick them up quite cheaply and they are brilliant especially for nerve pain which I am using one for right now!
Crystals – These days I can often be found with a crystal on my person and if I am in pain I will hold one against the area that hurts. Different crystals work for different conditions so check out that link for more information.
CBD oil – I have used this before but was priced out of using it for a while, however now my pain has flared I have turned back to it and I take it just at night to reduce my pain and to help my sleep. I also use the crystal Howlite at night to help me sleep and its soothing to hold so I would recommend that.
I would love to hear what helps you at times like this and also I do hope this helps you a little even if it is knowing you aren’t alone while the seasons change.
Winter is coming fast and like in the spring I like to take stock and look ahead. Making plans and changing things up, and that is happening on this blog as well. If you have been following me on Instagram recently, you will know that I have been really getting into my psychic classes, and especially I have become interested in Crystals and living more in tune with the Earth.
Now I started this blog to talk about chronic illness and how my faith helps me through, but my faith has changed and so has my outlook. I was a Christian-Buddhist then but now I see man made religion as holding me back from really getting close to God. I love that he provides every kind of plant to heal us, and crystals and rocks that contain energy to help us as well. If we live our lives around the moon then we are more in line…
Now I do not want you thinking I am no longer a Christian because I am, I still read my bible daily, and my faith is still the cornerstone of how I live my life. However, I want to talk more about my beliefs and my psychic class and the things I am learning on here, so from now on I shall be talking about that on a Monday and on a Friday you will get a round up of how my chronic illnesses are going and how my life is going.
Here we go:
So this week I started a book called Moonology the author is an astrologist and she believes that linking up your plans and hopes every month with the moon will help them to happen. Now I am not a Wiccan, I do not have alters or do spells because I believe in the power of prayer. I am new to manifesting myself, but I know that by trusting in God and setting intentions then we can make anything happen. We know that ancient civilisations trusted in the stars and moon, and I think they were right, I think God provided so many simple ways for us to make our prayers more powerful.
I am really enjoying reading and learning about the power of the moon’s influence over prayer and I am going to start using it in my monthly plans from now on. I really would love to see my blog and my You Tube Channel do well and start to grow so I can help others and as the bible says:
“You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven. – Matthew 5:14-16
I have also been studying some crystals and really starting to learn about the ways that crystals can help those of us with chronic illness, for example Howlite is a really calming stone. It helps reduce anxiety and stress, it is great for insomnia and having it by your bedside will help you to sleep, it did for me! It can also clear your mind and so it helps with both meditation and mindfulness and has really become a favourite stone of mine. I am learning about how they can help different illnesses and I even had a bracelet made for my husband by Mighty Moon on Etsy with crystals meant to help with epilepsy.
Now I am not suggesting that they are a cure, but if you use them alongside other forms of care what is the harm? Do you use anything like this? What crystals or books do you recommend for someone wanting to get into more natural remedies and to support their body without so many chemicals that cost so much money!
My psychic week:
So I have been meditating a lot, reading up on so much and spending a lot of time trying to find my way and getting close to my intuition. I have been getting hazy images in my third eye of things changed round in the room while meditating, and after speaking to my psychic teacher I found this was perfectly normal. It was simply my Spirit Guides training and teaching my spiritual mind to learn logic. This was so interesting to me and I find the more I meditate and learn the more I open up to angels and spirit guides.
I have also been having times when I can hijack my dreams and use them, while asleep, to contact people I know who have passed!! I am unsure right now how this will play out, but it has happened three times and I am quite excited to learn more. Right now it kind of feels like the world is opening up to me and I am learning from much older civilisations how to get closer to God and how to open up to this Earth that God gave us.
I hope you will enjoy this change on the blog, and that you will stick with me while I find my way with updating twice and talking about my spiritual side, please let me know down below in the comments if you have any ideas or thoughts.
This post includes some affiliate links, but it is not sponsored.
Well I have been put on antibiotics this week, hence no post on Monday just gone, and I feel awful on them! I am literally sleeping most of the time and to be honest resting leads to guilt, and I have written about this before but the struggle is real!
My husband is not feeling too well right now either so I want to be looking after him, instead I am staying in bed all morning, needing baths to help my pain, and not managing to do my physiotherapy or yoga or any housework! I am literally a lump on the sofa and it is not a nice feeling at all!
Now I try my best to be positive, I make sure I have my God time every morning, I meditate and I practice mindfulness to try and help my chronic illnesses. However, there are times especially when I am struggling with my pain and fatigue, when I cannot control my thoughts and things can turn negative. This is when I need to dig deep and try to use all the tools in my toolbelt to try and keep my vibration and spirits up.
Now I don’t know about you, but I have a few things that help me and hopefully they can help you sometimes and I would love it if you would hop into the comments and share some of yours:
- Meditation: This is a big one for me, I use the Insight timer on my iPad to find guided meditations focused on self love, raising my vibrations and opening to the Solar Plexus Chakra which is connected to personal identity, self will and how much confidence you have. The Solar Plexus is very much related to energy levels, problems with digestion and metabolism so I am working very hard to connect and open this chakra up at the moment.
- Alternative Therapies: There are a wide range of crystals that can help with energy levels, I recently bought a Bloodstone and I am working with this just holding it and meditating with it to see if it helps. There are a lot of things like essentials oils and crystals that have been used for thousands of years as medicine and I think it is important to investigate and try things to see what works.
- Diet: No I am not talking about losing weight, but just paying attention to what you eat when you have chronic illnesses. There are so many diets recommended for different illnesses and it is important to check out bloggers who are living with those illnesses to find recommendations that actually work. I am trying to stay away from fatty and processed foods and to get back to making things from scratch.
- Listen to your body: The main thing I would say is to be in the moment and listen to your body, it will generally tell you when it needs to rest or eat or when there is pain and it is when we ignore these signals when a flare comes!
- Take a bath: I use some lovely Magnesium salts and a bath bomb, magnesium salts can help pain and resting in warm water if possible for you can really help with aching muscles as well as nerve pain. I sometimes bathe in the evening then go to bed and oh my goodness do I get a good sleep!
- Heating Pad: these are a staple of any chronic illness warrior honestly a heating pad can make all the difference, I use mine a lot in the evening for my back pain and they are a must if you are dealing with long term pain.
Now I am currently watching one of my favourite podcasts on you tube and typing this out, but I cannot stop yawning and honestly I just want to be in bed! However, if I had not done this post I would have felt like I had achieved nothing today and that is such a difficult emotion to deal with. The best advice I can give is to remember that as a chronic illness warrior, we are dealing with so much just to keep going and because of this it is so hard to deal with societies expectations anyway so we need to give ourselves a break. I hadn’t really realised I was feeling guilty until today and I know I have dealt with this before, so I know I need to just let that go and try to remember my worth is more than what I do.
I hope you will post the things that help you down below in the comments and I am hopeful that my experiences this week can help you.
So if you have been reading my blog for a while, you will know that I was diagnosed with two illnesses Ehlers Danlos Syndrome (EDS) and ankylosing spondylitis. Looking back some diagnosis just make sense and for me that is EDS, when I started to research it all just seemed to fall into place.
See back when I was a kid I had a lot of problems with my legs, they were constantly painful and the one time I saw a doctor I was told it was just ‘growing pains’. However, the fact that I was late at walking, and that my legs were so stiff that I couldn’t straighten them when sitting surely someone should have put the pieces together?
Thing is that though it answers some of the questions I have had my whole life it doesn’t change the fact that I live in the now. I am trying so hard to live in the now and to bring more mindfulness into my life, looking backwards just brings negative thinking and depression. I have to try and hold myself back from that and try to work with what I have.
Right now I am doing all I can to keep my body as healthy as it can possibly be and to do that I have listened to my physiotherapist. Now I love my mother, but she never does her exercises, me on the other hand I try to fit them in as often as I can because I am determined to keep on my feet and as mobile and as well as I can for as long as I can.
Now I am quite lucky because I have always done done form of exercise, though it is frustrating that my body is unable to keep working at the pace I wish it would. I miss doing Yoga with Adriene routines, I liked having goals of particular poses I wanted to work towards however last year it became easy to see that I had to step back. I was having my joints dislocate and having a lot of neck pain which was only made worse by doing the plough!
After talking to my yoga teacher I dropped out of yoga class which was such a hard decision because it got me out of the house and gave me some social time that I very much longed for. Thankfully soon after I discovered Sleepy Santosha and I have been keeping on top of my body’s flexability and maintaining a level of fitness that I am thankful for and so is my physio! Right now that and my physiotherapy exercises is more than enough for me and if I try to do much more now I find the small amount of housework I can manage is totally out of my reach!
I do think reflecting back on things is important and there are times when it is very much needed in life, but I also believe that living in the now is all we really can do. It is hard to admit that I could have looked after my body better if I had known what I was suffering with back then, but I am proud of where I am in life now and the person I have become…surely that is more important?
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?
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.
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!
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
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.
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:
- Smile at a stranger
- Be kind expecting nothing in return
- 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