Trying to live with Chronic Illness

Health Update

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

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

 

 

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

 

Finding New Inspiration

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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

Possible headache relief

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Hey everybody!

So this week has been pretty interesting and a little bit of an experiment that I am actually pretty excited about!

So on Wednesday I got to see a headache clinic for a chat and to find out if there was anything could be done for my daily headaches, and weekly migraines. He was the first specialist I have seen for a while who did not make assumptions because I had chronic illnesses but just wanted to help my pain. He listened to everything I said and seemed pretty shocked when I said I had been suffering since I was at university!

I have never been offered any specific medications or other options to treat them so we had a good chat and decided that some nerve blocks might help as well as a couple of medications to take if a migraine hit me.

A nerve block is when local anaesthetic is applied to a group of nerves to block pain, most people have heard of an epidural during labour and it is a type of this. I was nervous, but my best friend has this treatment for her Fibromyalgia pain in her upper back so I knew it could give excellent results.

I thought he would refer me to someone to do this treatment as we were in a doctors office, but he did it there and then! It was strange having injections into my head, I had one at the base of my skull on the right side and one above my left eye in my scalp, and I could hear the needle against my skull which was so weird! He also injected some steroids into my left jaw joint right by my ear which he said was swollen and not opening properly which explains a lot! I felt a bit bewildered as I left, a bit shaky, but overall and most importantly very thankful! I could not stop thanking him for listening and for helping me which seemed to puzzle the doctor but he understood I hope.

The next few days were hard, the pain from the injections was quite bad and I spent the next couple of days in bed resting and feeling quite fragile! Getting comfortable on my pillow was not easy and even now on day 5 I feel like if I move my head too fast it will be painful, I guess because the headache is still there but the signal cannot get through? Still it is so nice to not have a headache and to feel like my head is clearer so I can think a bit better.

I am going to be seeing a Rheumatologist soon so I am going to suggest it maybe for my neck and upper back pain and if it could be done together I might find myself pain free for a few weeks at a time? I know it is wise to be careful and not get my hopes up, but when you have been in pain for so long with nobody really listening it can be nice to have a little glimpse at something that could help!

Have any of you tried this pain therapy? Has it helped and would you recommend it? Let me know in the comments because this is something I am quietly excited about!

Namaste xxx

Attempting to heal chronic fatigue

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Hey everybody!

First of all, Happy New Year! Yes it is 2018 and there is so much to look forward to and be inspired by when it comes to the start of a new year!

A few weeks ago, I was contacted by a woman called Zoe who has constructed an online six week course because she managed to cure herself of her chronic fatigue. She wanted to ask for a little advice about the website and we got to chatting. Now this post is not sponsored this is all my own wording until I hand it over to a few words she sent me, however she allowed me to take part in the course for free in exchange for me talking about my experience here on my blog and my You Tube Channel.

Now I am always sceptical when someone claims to be able to cure an illness, however I am also someone who would rather try and fail than to never try at all. So over six weeks of the course I will be doing weekly videos on my You Tube about how I am getting on, and then at the end I will post here how I am feeling, and just a general review of the course.

I am extremely hopeful and things worked out so that here January 1st 2018 I am going to be starting the online course. This is something I have been looking forward to and I am hopeful you will subscribe to be on You Tube and follow along as I try out Zoe’s course!

Heal Chronic Fatigue Course and Community

A message from course leader, Zoe:

“The Heal Chronic Fatigue Course came about once I had recovered from several years of severe ME/CFS. I wanted to let others know that it is possible to fully get better and to share my knowledge of healing techniques that have worked for me and for others. One of the hardest things about this illness is the sense of isolation and this is something else I really wanted to change.

The number one message I would like to share with people who have ME/CFS or any kind of fatigue-based illness right now is that it can get better. I know how hard it feels when there seems to be no sign of hope or improvement – but please know that, no matter how long it has been, things can still turn around. I also want you to know that you are not alone. All over the world, hundreds of thousands of people with ME/CFS are listening to the still, small voice inside which tells them that they deserve better health. It’s important to understand that there is no convenient external ‘cure’: healing is an internal process and it can be challenging, but that is why we are a community with such a strong focus on supporting one another.

In my experience, when people with fatigue-based illnesses gather together to learn and share the healing methods that have worked for them, an incredible shift in health consciousness occurs. This involves taking back power and responsibility for our own experience. I understand that this idea can be hard to come to terms with, especially if we have been ill for a very long time, but most people report that feelings of empowerment are a huge, huge catalyst for healing.

The course itself covers three main topics in detail: cognitive, nutritional, and emotional health. We discuss the lifestyle patterns that create and promote fatigue-based illnesses and the corresponding patterns which heal those illnesses. We’ve had extraordinary positive reviews so far from our members and from health professionals. It’s a new model for treating chronic illness – one that focuses on healing the cause, not just the symptoms.

I’m really looking forward to partnering with Beverley and following her journey on the course. I wish her all the best and I know that she will be able to provide some truly valuable insight as well. So, watch this space!

For more information on the Heal Chronic Fatigue Course, please visit: healfatigue.teachable.com/p/heal-chronic-fatigue. You’ll find details about what the course includes, our community, my background, frequently asked questions, and our inclusivity scheme. We know that everyone deserves and has the potential to get better. So, do join us and be part of the movement!”

  • Zoe B. C. Emma is a certified Complementary Medicine Practitioner, with qualifications in Nutrition, Neuro-Linguistic Programming, and Mindfulness-Based Stress Reduction.

 

Wish me luck!!

Namaste xxx

 

Pushing passed Guilt with Fatigue

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Hey everybody!

So it is getting closer to Christmas, with plans for visiting relatives and going out for dinner on the day as well as visiting my elderly Nan are all hovering over me. Of course, my body has chosen right now to get a cold and to hit me hard with fatigue that leaves me laying on the sofa unable to think straight no matter get dinner going!

My wonderful husband has epilepsy and his medications make him drowsy and tired, yet he comes home from work and makes dinner, helps me undress and get into bed and listens to me natter on and on about TV shows and Instagram and whatever else is in my head!

The problem is that I am constantly hit with guilt, I am forever saying sorry to him and that drives him insane! But I do feel so guilty, about him having to cook after being at work all day and I just hate that I feel like a useless blob on the sofa!

So much of our self-worth in society is tied up in what we do for a living, where we live, how we look and if you are unable to keep up, judgement comes from inside as well as from society at large. I find even my mother, who has Multiple Sclerosis, give me looks and makes comments when I ask Lee to pass me something or to help me. So when it even comes from those we think should understand how are we as chronic illness sufferers meant to keep our heads up and not drown in guilt?

I know many of you will understand what I am saying and will probably agree with a lot of points I have said, but my question is if we cannot do the housework and we need to put on family and friends how do we push passed this guilt that comes with fatigue? How do I as a woman who prides herself on having a clean and tidy house, deal with being unable to keep up with keeping everywhere clean? How do I pass jobs on to my husband when he is already tired from work and not feel like the most awful failing housewife?

Usually, I like to give tips and ideas but this time it is me asking for them: How do you keep your self worth going when you are unable to work or keep up with housework? How do you push passed the guilt that comes with times of extreme fatigue? Answers in the comments please? I will hopefully do a follow up to this post soon with some conclusions and helpful ideas to help my fellow Spoonies keep their self worth high!

Namaste xxx

Feeling frustrated at the doctors

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Hey everybody!

So a couple of weeks ago I posted THIS post, in it I spoke of how I feel let down since my diagnosis was changed from Multiple Sclerosis to Fibromyalgia, Chronic Fatigue Syndrome, and neurological problems they did not look into. I felt strange doing it, but I sent the surgery a link to the article and soon was called to see the doctor to discuss it.

That appointment was yesterday and I really do not know how I feel about how it went!

They listened to me and referred me to people to try and help I have been referred to a rheumatologist to hopefully take over the care of my Fibromyalgia. I have also been referred to have ultrasounds on my shoulders to check what is going on and why I am getting so much pain and cracking with them.

I have also been referred to a therapist, I think because of my chronic depression which has flared, but I wonder if they are thinking some of my symptoms are in my head? She did say at one point that Fibromyalgia is a ‘dumping illness’ that is used when no other diagnosis can be found and that it cannot be cured.

I sometimes feel as if Doctors being scientists are only interested in illnesses that can be cured or measured. As my illnesses are mainly causing me extreme pain and fatigue neither of which can be cured or measured they really do not know what to do with me!

I sit here before you frustrated but slightly hopeful, maybe something will be found that they can latch onto and that will get me the help I want. Or maybe who I have been referred to will know the latest research and will know how to deal with my neck and shoulder pain which causes headaches and pain without just throwing medication at me???

I will keep you all informed as things progress, I am unsure what to do about the fact the doctor prescribed me Morphine for pain and feel a little disappointed that something else was not suggested…still I am willing to try anything at this point and cling to the hope that next year will bring me some good care.

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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