Trying to live with Chronic Illness

chronic health

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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

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

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

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

Making a fresh start after a depression flare

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Hey everybody!

Last month was pretty hard for me, I lost my grandmother and I turned 40…yeah I did not appreciate that!

I got a little lost in everything, grief kind of took over and I stopped doing a lot of the things that I love. I stopped practising yoga, I stopped eating three meals a day, I stopped looking after myself and I was miserable! I was feeling overwhelmed with grief and I kind of shut down because I couldn’t process everything that happened in such a short space of time.

I was starting to think that would never clear away and that I would be stuck with my depression at a new higher level. I was considering going back to my doctor to get my antidepressants raised, but I am very disillusioned with doctors right now. I have been depressed since I was 14years old, and I have had fibromyalgia and ME since I was in my early twenties and nothing has changed doctors still just throw tablets at me instead of trying to find out why I hurt and how to treat that…but I digress!

So I was thinking of making an appointment and then April came along…

This month felt different, I started reading again, and I got hold of a copy of Medical Medium, I also finished the Heal Chronic Fatigue course I have been doing since January 1st and you can see my videos about that here. The course really started my interest in alternatives to western medicine and I am enjoying the journey that I have started on. I honestly think looking into nutrition and natural remedies might be the way forward to getting some relief.

So now my depression flare has lifted I feel like I can get back to things again, updating this blog weekly, and my You Tube channel twice a week. I did yoga this morning and managed to dust the living room, and though I am sore and tired I feel accomplished. It feels good to do the things that make me happy again and though I know this new way of looking at my illnesses will take time and research and I need to be patient with myself, but I am excited!

So let me know in the comments any tips and tricks or books I should read? I am going to be documenting this journey as I go both here and over on my You Tube so make sure you are subscribed to both so you don’t miss out when I update.

Namaste xxx

Making life a little easier when you’re chronically unwell

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Hey everybody!

Life can be a struggle for all of us at times. Financial troubles, the stress of running a household and raising kids, relationship pressures, family problems and much more. However if you’re unwell or are coping with chronic pain, then everything is even harder. Some days you struggle getting out of bed or dealing with the simplest of tasks when you’re in pain, so anything you can do to make life a little easier is sure to be a good thing. Here are a few ideas.

 

Look Into Alternative Therapies

Modern medicine is excellent, and new breakthroughs are happening all the time which can treat and cure all kinds of ailments. However the side effects can sometimes be as unpleasant as the illness itself. In the case of chronic pain, often even the most up to date and powerful medicines still struggle to touch it. Whether you want to reduce your pain medicine or just give it a boost, lots of alternative therapies have been shown to be very effective. Plus, they’re scientifically proven so it’s not like you’re simply relying on hope! Massage therapy, aromatherapy, acupuncture and others are all treatments you could consider. Mindfulness and meditation has also shown to be effective. These can work by teaching you coping mechanisms of dealing with pain, and how to redirect your thoughts and energy. It really is a case of mind over matter which is a powerful thing to be able to do. Group sessions which deal with pain management where you can socialise with others in the same boat and share tips and advice is another option. Anything you can do to cope with or minimise pain is a good thing, it frees up much of your energy to be able to get on with your day instead of it solely revolving around pain.

 

Manage Your Health Online

These days we can do just about everything online. We work, socialise, we bank online and so much more. So it makes sense that we can now manage much of our health online. From ordering prescriptions from a site like www.simpleonlinepharmacy.co.uk to using online doctor apps during times we’re not able to get to our GP (or it’s out of hours). We can use apps to track medication, we can use devices that monitor blood pressure and blood sugar at home and send this information to our phones or computers. Even fitness devices like Fitbits and other trackers can be helpful. These measure heart rate, exercise levels, sleep quality, you can use them to track your calories, weight, water consumption and much more. There’s plenty we can do to manage our health and conditions online these days, and doing so can certainly make life easier than attending extra doctors appointments. New systems are being put in place to keep your information secure as a patient, and so it’s a simple and safe way to look after yourself and to keep on top of your conditions as much as possible.

Accept Help

Many of us are too proud to accept help, but this really shouldn’t’ be the case. Whether it’s friends or family offering to help you cook or clean when you’re having a difficult day, or the government offering money and assistance to help with your condition- don’t immediately reject it. Your support system just wants you to be happy, and if the shoe were on the other foot, you know you would be the first to help them. If they want to help out, and do something to make your life a little easier then why not graciously take them up on the offer? Popping out to the shops for example might be a small thing for them, but a huge thing for you when it comes to being ill. When it comes to accepting help from the government, this will be money and assistance you are legally entitled to. Don’t feel like you need to turn this down, we’re lucky to live in a part of the world who looks after its citizens when they’re unwell. If you’re allowed this help, then take it if it will make your life easier and it’s something you need. Money could be used to purchase an adapted car, or to modify your home to make it suitable for you with your condition. It could help you to afford travel to doctors and hospitals and pay for your prescriptions. It can simply make your life that bit easier and give you one less thing to worry about.

Namaste xxx

Contributed blog

 

Pacing yourself for special occasions

Hey everybody!

Yeah so 16th March I turned 40 and I was not exactly happy about it, though with my poor health over the years and my struggles with depression I was determined to enjoy it. This was also my first birthday without my Nan and Grandad I was closest to so I wanted to make sure I made them proud and had fun, so I had to look at pacing for special occasions so I could survive my plans!

I knew I had to do two things so that I could celebrate with both my parents separately and so I decided to spend my birthday, which fell on a Friday, at my favourite museum. The Black Country museum is so cool they have recreated a small Black Country town and it is amazing I just love it and I have a vlog ready to put up on my You Tube channel so make sure you are subscribed!

On the next day I arranged something a little less out in the world and involving so much getting out of my wheelchair, so I decided to go for afternoon tea. I have been doing this for the last few years at Weston Hall and I invited one of my best friends Jess, my mom, her parents and two of her sisters as well as my lovely husband.

I knew that recently I had been working on my fatigue with the Heal Chronic Fatigue Course, so I was wary of letting all that hard work slide by doing too much. I also did not want to end up triggering a flare of my chronic illnesses and I was aware of the fact that my husband has epilepsy. This causes him to be very tired and suffer with headaches and extreme fatigue if he does too much which can trigger a seizure, I have to look after him too.

What I had not factored in was Lee wanting to get a new phone so we ended up going to a local shopping centre on the Thursday and he treated me to some presents because he is so kind. So I went from rarely leaving the house, to being out in the world in potentially loud and anxiety triggering situations for three days in a row. Honestly, I was not sure I would survive, but after resting all day yesterday (Sunday) today I was able to get out of bed and I have noticed I am tired and my pain is up, but it is manageable and yeah…I am pretty amazed so I thought I would share what I did to try and keep on top of everything:

  • Utilise wheelchairs when possible – The museum I went to supply wheelchairs if needed which is so useful as I cannot walk far and I struggle with pain which means I need to be able to sit down regularly. However, as this is a living museum I did not want to take my own wheelchair as it would get filthy, so after checking their website I was thankful to be able to borrow one there. Checking this took no time and it saved me so much energy and pain because we could wheel me through all the coal and cobbled streets without worrying about it and I could just enjoy!
  • Be prepared for change – Always make sure you are well rested before a group of events are together, no housework, no exercise just rest in the week or so before to save up spoons just in case your husband decides to take you shopping!
  • Utilise alternatives – I suffer very badly with social anxiety, so I bought some CBD anxiety tea from my local health shop, when we got home each evening from these things I took a cup. It helped me to relax and rest and it also helped my pain. I also used my heating pad in the evening and massage oils to help my pain and fatigue. We all have different needs, but finding things that help other than tablets from the doctor will support you so much when you are trying to cope.
  • Schedule rest – This is so important! On all three days I was in bed by 6pm with my heating pad and Netflix just resting and watching TV. Always make sure you have times when you can walk away and rest, whether it is a little nap while your husband keeps family company at Christmas, or just making sure you are in bed extra early, this is so important! If you have busy days make sure you allow time to rest and making sure family understand it is that or things do not happen is essential to cope with being social and chronic pain and fatigue.
  • Dismissing guilt – It is so easy to feel guilty for having fun, I think society makes the disabled and chronically ill feel like they have to just sit on the sofa and do nothing. However, yes I did see friends and family, yes I ate too many calories and yes these things made me feel more in pain and more tired. But I am of the opinion that my life has value and I refuse to be forced to never see friends and to not have fun for fear of not meeting others expectations. I will not let anyone ruin my great memories and fun I had for my birthday which was so hard for me to cope with but it was lovely and yes I am still smiling!
  • Be honest – I am lucky, my friends and family understand I have limitations, not everyone has that. So instead of pretending you are well, pushing through the pain and staying up too late so others are happy…be honest. Speak up about needing a wheelchair, or to take a break and grab some tea and extra meds, and do not let anyone make you feel less for needing these things.
  • Give yourself a break afterwards – Planning fun activities is harder for us spoonies, but do not forget to look after yourself afterwards too. Yesterday I did not get out of bed until lunchtime and I was back in bed by 6pm, I made sure I got all the water I needed and I rested I made sure I had this scheduled and I did not guilt myself or expect anything. Yesterday was a difficult pain and fatigue day, but so worth it for those wonderful memories!

I hope these tips and tricks I utilised will help you to be more social and to celebrate things that need to be celebrated. So many of us stop being social because of our health, but hiding away is detrimental to our mental health and we will lose our ability to keep friends and lose valuable fun memories if we do not take the time to plan and be careful.

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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