chronic illness
Looking back as I look forward
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[IMG Picture shows the name of the blog in orange above a picture of a woman looking out of an open window and below that is the title of the blog]
First of all I owe you an apology last week was a bit crazy and instead of pushing out a not so good post I thought I would look after myself and have a week off. However, here you are so maybe I should explain that I have been going through a lot of self-discovery recently and because of this I find myself looking back as I look forward.
Last Friday was so exciting I went to the Mind Body and Spirit festival which was held at the NEC in Birmingham. It is not too far from me and I was lucky enough that one of my friends Josh and his Mom fancied having a day out there too. I used my wheelchair and Josh was kind enough to push me, there was a lot of walking at the event so I couldn’t have done it!
It was also a very overwhelming event, there were of course a lot of crystals there but also everyone was open and the energy really affected me and Josh. Not in a bad way we could just feel a lot even with grounding and protecting before the event which I dread to think how it would have been if we hadn’t! The day went by so fast and to be honest I did not buy much or look closely at much because I felt overwhelmed by it all. That said it was a wonderful day out with one of my close friends and I would go again now I know what to expect.
It has taken me a couple of days to recover of course, but that was good, it gave me time to think and to come to terms with something I only found out last week! I went to see my GP to see if there was a plan after being diagnosed with ankylosing spondylitis and Ehlers Danlos syndrome (EDS) in April.
My doctor looked at my records and found the letter from the specialist and that was when she told me that I have always had EDS and in fact it is the fact that I have been overstretching and misusing my joints for so long it is actually the EDS that triggered my Fibromyalgia. I did a You Tube video about how this made me feel and where my head has been at since I got this information:
I think I needed a little time to understand what this news meant and how I was going to process it, I mean it makes sense but still the EDS is such a new diagnosis I wasn’t sure how to take it. Now I cannot help but be thankful for good friends who stand by me and my wonderful husband who is always there for me no matter what, I am so so lucky!!
Moving forward my attention is going to the EDS, on protecting my joints and looking after myself I will be working closely with my physiotherapist to get my body stronger and hopefully by using my joints correctly and doing gentle daily exercise. I do most of that using You Tube and if you ever wonder what sort of things I do it depends on how I am feeling on the day but it is always something from this playlist.
I have also learned how to subtitle my videos and it means creating a video takes much longer but it is so worth it when I now know it is as accessible as I can make them. I will hopefully be working slowly through my older videos to get them subtitles but if anyone would be up for helping please just email me for information as to how I need all the help I can get!
Namaste xxx
Wait for this all to blow over
Photo by Toa Heftiba on Unsplash [IMG the title of the blog with a picture of a grey and white bedspread with an open book and a cup of tea on it underneath is written the title of the post]
Welcome back to my blog, and wow this week has been kind of tough for me both with my mediumship and my health! I really want to get going and keep growing but somehow my body has been asking for me to do nothing and just wait for this all to blow over!
Patience has never been something I have been especially skilled at, and to be honest I would like to be better at it. The problem is when you pray for patience God tends to make you wait for things! However, knowing this I have been praying to have more patience and to accept things will happen in His time, and so he made me wait and grudgingly I went with it!
Week before last I had some antibiotics for an infection, and shortly afterwards I started to get a lot of pain through the middle of my body like I had been impaled or kicked in my back. It has made it so hard to sit or stand for long and has stopped me doing most housework other than light things, and all yoga/physiotherapy!
I thought it was a flare and that was why I focused on that last week, eventually though I couldn’t take it any longer and made an appointment with my GP. I got to see a locum this time, and I am glad I did because she was thorough and so nice. She listened to me which, as other chronic illness warriors will know, is rare and came to the conclusion that after years on medications the antibiotics had been the tipping point.
She explained that they had interfered with another medication I was already on and caused gastritis, which is inflammation of the stomach lining. She took me off one of my meds and sent me to the hospital for blood tests to make sure it hadn’t upset my liver and pancreas as well. This scared me, for a long time I have wanted to lead a more natural life, but somehow medications never seemed an option but now I really wish I could see my regular doctor and see what I need to be on and what I can come off and maybe look into more natural remedies.
This gastritis is so painful and draining, I feel awful so the thought of doing long meditations and working with tarot etc is the last thing I have energy for. It is so frustrating because I really want to progress and have a relationship with my spirit guides, but how can that happen when my pain is so bad I cannot meditate properly? I read so many books and blog posts about connecting with them, but most say it takes time and if you are not connecting there is something holding you back…
Is it my health? I kept thinking it was my fear and lack of self confidence, which it could also be, but I think most of my fellow warriors will understand that it often feels as if our health is always holding us back. I started to get frustrated, I couldn’t even hide it at my psychic class and I worry about this being the thing that stops me finding and achieving my soul’s purpose!
Then I remembered, I had prayed for patience…we are told in the bible and in most sacred texts I have read, that patience is a big part of faith. Everything happens in God’s time, He has a plan for my life and maybe I need to stop trying to get ahead and instead trust that things will happen when they are supposed to.
I guess I just need to make a cup of tea and wait for this all to blow over and for things to fall into place when they are meant to!
Namaste xxx
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Finding my place in the world
Photo by Kinga Cichewicz on Unsplash
Hey everybody!
So as you probably know by now, I am currently on a spiritual journey and I am excited that I am starting to feel more confident to be sharing more about that both here and on my You Tube channel. It feels so nice to be exploring the world and finding out that I do still have a purpose and a reason to be in the world. I feel like I fell out of society when I became chronically sick, however, now I have been studying about my soul’s purpose I am trying to find my place in the world again.
I am loving the courses I have done so far with my teacher Lynda Bourne, I have done the Working with spirit guides and angels and I am currently doing the Psychic mediumship level 1 course. I love learning how to connect and discovering more about how things work and how to do them safely. However, so far it has not set my heart alight and I still struggle to connect at all with my spirit guides which is a big part of it.
However, I have been studying and working hard on my own, listening to podcasts and reading so much and it feels like I am on the verge of something…
Now what that is I just do not know but I am working hard to improve my confidence and self esteem two things that I never had much of but that really took a bashing when I got sick. Along with that I have been doing a lot of soul searching and looking to my childhood to try and find out what I should be doing. This is because when you are young society has not had time to put it’s constraints on you and the things you loved then can give clues.
So when I was a kid I would spend a lot of time playing in our back garden and collecting stones and I had a few crystals, looking back can really help you to see how to move forward. Now I am an adult and I am most happy in the countryside enjoying nature, I collect crystals and yes I still pick up stones everywhere! So maybe my future has something to do with nature and crystals? Another clue can come from what other people come to you for or what they compliment you about, now my whole life I have had people come to me for advice and to talk. I am very logical and have been told I am really good friend so maybe helping people find their way?
Now of course, my blog and You Tube could be a part of that I do try to give advice and tips on here and in my videos, and perhaps stones and crystals can be a way to help others through healing? Then again I am also a huge fan of meditation and Lynda teaches meditation as well as crystal healing, so you can see how there is a hazy picture coming into view but for right now it is confusing.
I hope you will stick around as I continue on my journey and as always I would love to hear your thoughts in the comments below
Namaste xxx
When a pain flare is overwhelming
Photo by Pablo Guerrero on Unsplash
Hey everybody!
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.
Namaste xxx
Facing changes as winter approaches
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Hey everybody!
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.
Namaste xxx
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Resting leads to guilt
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Hey everybody!
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.
Namaste xxx
When will I ever learn?
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Hey everybody!
Well now I was going to be good, I was trying to be good but then things happened…I stopped eating well…I started trying to do a yoga challenge…and my pain flared! When will I ever learn?
It is so hard because I know what I should do, I know it and I have written about it many times so why is it that I fell off the wagon? Me and my husband were left with fatigue and pain after having a take away pizza, and our diets had run into problems we were not eating the things we knew were good for us.
Everyone has good intentions, we all try our best to eat well especially us spoonies who suffer with increased symptoms if we don’t cut certain things out and add other things. We know it and logically we do our best but then all it takes is one night out where you have a pudding and you start to crave the things that are not good for you.
What makes it worse is that eating badly makes you feel worse, and the worse you feel the less you want to stand a cook! I do have a perching stool which I actually got years ago from occupational therapy, but still if the choice is that or ordering in you know what will win and I know it will be bad!
At least the weather has changed though so we can eat more slow cooker recipes which is such a help, and I love that I can just throw everything in when I feel ok in the morning and by dinnertime it is cooked. Yes I do love stews and soups and things like that they are cheap and easy to make and really nutritious because you can throw a ton of frozen vegetables in.
Of course, my diet isn’t all that fell off the wagon… Yoga with Adriene is how I used to do yoga a year or more ago, every day pushing my body and feeling great afterwards. However, with increased pain and the instability of my joints my physiotherapist said I was only to do low impact stuff. I found Sleepy Santosha and was doing well with her spoonie friendly routines and it was keeping me supple without pushing my body too far.
I was doing well until Adriene came out with a new 14 day yoga challenge to get everyone doing yoga, and I thought it won’t be hard she said it is for anyone! I know I know…by day 4 I was in so much pain and so fatigued I ended up having painsomnia and feeling dreadful! These things together and my body was screaming for me to stop.
The moral of this story is, if you know that doing the wrong thing is going to send you into a flare, be good just be good!
Namaste xxx
When fatigue reminds me to slow down
Photo by Kinga Cichewicz on Unsplash
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
When pain gets in the way
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Hey everybody!
Sometimes chronic pain can get to a point where it is getting in the way of the life you want to live. I have dreams and things I want to achieve, but it is starting to feel as if my pain and fatigue are getting in the way.
I have a video I am putting up on my You Tube channel that kind of hits on this point, but basically it is that my spine pain gets so bad by early evening that I want to just go to bed and lie flat. I cannot think straight and to be honest I just feel like rubbish! Remembering the things I need to remember for my psychic course is becoming so difficult and I guess I am worried my illnesses are going to hold me back?
I guess I could be being silly, but it does feel a lot like I am letting myself down does that make sense? I mean should I be pushing through the pain and fatigue? I try my best to so that I can do a little housework and my physio exercises I mean it isn’t as if I get to do much already because of my fatigue and pain you know?
On top of that I still have not been able to see my doctor after getting two new diagnosis! It is frustrating to not be able to see the people who are meant to take care of me you know? I really need my medications reviewing because I have not had them looked at for a while but whenever we call to make an appointment I am either told there are none or given one with the nurse. I was a nurse so I know that she cannot make decisions like changing medications for long term conditions so I want to see my doctor!
Then two weeks ago I was given an appointment at the doctors in our village, it is like five minutes from us and everyone was nice and the doctor was so lovely and helpful and seemed knowledgeable. So now me and Lee are wondering if we should change to that doctor surgery so I can get some better care. After all, my current doctor did say Fibromyalgia was just a ‘dumping diagnosis’ they give when they don’t know what is wrong.
I hope this post makes some sense, and maybe if you can read passed my brain fog and pain addled brain then you could leave me some ideas of how to keep my body going when I am in pain and want to be in bed, thank you.
