Trying to live with Chronic Illness

chronic fatigue syndrome

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Photo by Sambazon on Unsplash

Hey everybody!

So if you have been following my blog and you tube channel you will know I am currently doing HEAL CHRONIC FATIGUE COURSE and though it is set up as a six week course I have taken a little longer over the middle weeks. This is because it deals with nutrition and how we often think we are being healthy when we actually are being lied to by companies who use far too much sugar and salt and far too many chemicals!

I have been trying to find a healthy diet to follow for years now, but getting reliable information is so difficult! Just a simple google search will show you just how much emphasis there is on low fat and being thin rather than being healthy!! I have tried so many times but now I am even more determined because after reading what Zoe, who runs the course, says I want to be feeling as well and able to do things as possible.

Since starting the course, I have found myself able to do gentle yin yoga, a little light housework and shower every day which was impossible before! I am working hard to make sure I am getting enough sunshine, breathing fresh air, not relying on electric lamps too much and taking time off the ipad/phone and I am feeling better for it.

Nutrition is the last part of the puzzle, but where do I start??? Budget is a big factor, so I want to start making my own cereal bars and snacks, baking, and making our own bread…but so much is still confusing and hard to navigate. I am working my way through the food I already have in my home as I hate food waste, but as I run out I am making it a mission to replace each thing with a healthy alternative.

This is the only way I have found to navigate this HUGE minefield and to try and actually get good food that is not full of chemicals and sugar! I feel like as a whole diet is hard to understand for me, brain fog makes it hard to understand and I have memory problems that mean it is hard to remember a lot of information.

So one at a time I am going to replace the rubbish with food that has totally readable ingredients or that I have made myself, it is a scary and slightly daunting task but I want to do it. I want to reduce my symptoms as much as possible so I can be the best person I can, so I can keep up with housework and be a partner to my husband instead of someone who depends on him.

What are you doing to eat healthier? Do you bake and cook everything from scratch? Is there a specific diet that you follow? Let me know down below any help is most certainly appreciated!

Namaste xxx

Photo by Hans Vivek on Unsplash

Hey everybody!

So right now I am struggling with the fact that my Nan is nearing the end of her life, she has been one of the biggest influences on my life. I have been lucky enough to have her in my life for so long and I am thankful for that, however grief is creeping in and I am aware that I do not want to fall into the same depression that I did when we lost my Grandad.

So this time I am concentrating on the good, I am thinking through every good memory I have of times with her and remembering how thankful I am that she was chosen to be a part of my life. She taught me about God and how to have faith, she was always there to listen and she never put me down or made fun of my struggles over the years like others did.

My Nan is amazing and I am determined to follow her example and to hold onto God as I go through this journey with her. She always taught me that if you have your faith you have everything you need, and that is so true. My prayer times have been so sacred to me and have helped me so much to get out my feelings as well as to send love and care to her.

I have also been holding onto the Heal Chronic Fatigue course teachings and remembering to turn each negative thought into something good. Buddhism teaches that we should not try to hold onto people or things because they are not going to always be there. I have been using positive affirmations, good memories and positive thoughts to make sure I stay as positive as possible right now.

However, self care is not just about staying postive and being happy, I let my tears fall when they need to but the difference is I do not wallow in it. I let my emotions flow now I do not judge them like I used to and I am being patient with myself as my mind is very scattered right now because I am trying to wrap my head around losing my beloved Nan. Grief can be overwhelming at times, but it is important to treat yourself well, make sure you eat well and often and give in to comfort food sometimes because it is called that for a reason!

Have you been through grief? How did you cope and what things did you learn from that time?

Namaste xxx

 

Photo by Eva Dang on Unsplash

Hey everybody!

First of all, the neural blocks I spoke about last post are working, my head is a lot nicer without pain, I will do a full review of how I am doing in a week or so to give them a chance.

So, on Wednesday I am off to London to stay with my best friend for two nights and on Thursday we are going to see Hamilton! I love this play so much I definitely got caught up in the amazingness of it and I cannot wait to see it now it is in London as well!

I am not going to be there long, I am going to chill with my best friend she has Chronic Fatigue and Fibromyalgia as well so we rest a lot. We have a lot of similar interests so we are looking forward to spending time together and just having a nice time.

I get there by using the disabled help offered by National rail where you book assistance in advance when you book your ticket. My husband will take me to the station and there we will book in and someone will provide a ramp onto the train and there will be a disabled space for me. I will then get help off the train in London and Louise and her parents will meet me off the train, it is a good system and it works well so long as the station is manned that you are using.

I have done this before and not had problems so I know it will be fine I will take a book and be lost reading and not notice the time pass at all. I quite like the time on the train, it is scary and something I rarely do, but it feels nice to be out alone like I used to be before I got sick and for a little while I can pretend I am not sitting in a wheelchair and I am just going away for a couple of days.

Right now however my mind is buzzing with worries and fears as my generalised anxiety disorder kicks up a fuss and tries to dampen my excitement. I have had my outfits planned out in my head for weeks, and I keep worrying they will look silly or be wrong for the weather or a million other worries that have no basis in reality because I know my outfits are super cute and I will feel so good wearing them. Then there are worries about what to pack, do I need to take 10 pairs of pants? Do I really need extra socks just in case? Which pyjamas will be best…..the list goes on!

So when my brain is working on overdrive how do I stop the worries and get back to being excited?

  1. Breathe: Yes it might seem simple, but pausing to take deep, slow breaths can slow my mind and help me get back to feeling like I did after my morning meditation.
  2. Organise: To keep my anxiety down I tend to plan everything in advance, if I know what to pack and when and what baggage I am taking etc it can really help me to stop worrying so much.
  3. Pray: I stay close to the bible every day, and all through are examples of things working out if people simply take their worries to God and have faith that it will be sorted by God. I find this so comforting to know and I hold onto it with both hands.
  4. Mindfulness: This is a big part of the Buddhist faith and something that really helps me when my anxiety is pressing in on me. If I take a breath and concentrate on what I can see and hear in that moment it clears the negative and worrying thoughts from my head. In this moment everything is fine and I am safe so why worry?
  5. Trust: I have stayed with Louise and her family many times, they have always looked after me, spoilt me and made every visit special. They would never let anything happen to me and knowing I can trust them fully goes a long way to easing any crazy scenarios that my brain can come up with!

So after holding those five things close to me, I am managing to keep my anxiety to a minimum and my excitement to see my best friend and to finally see Hamilton on stage high. I will hopefully be doing some kind of video while I am there not sure if it will be a vlog or an interview with my best friend so make sure you are SUBSCRIBED to me to find out.

Namaste xxx

Photo by Asdrubal luna on Unsplash

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

Photo by Alex on Unsplash

Hey everybody!

I really do hope that this cold snap is not affecting you all too much, I have been reading blog posts and watching You Tube videos by my fellow spoonies and it is not looking good! This year even in Florida there was snow, and I am definitely feeling the climate change that all the boffins have been warning us about.

For me personally it is making it harder to want to drink enough water, my pain is worse, my fatigue is hitting me and my depression is trying to push me around. Every joint seems to hurt and I even dislocated one of my knees just by turning round something that really shocked me!

So how am I keeping going and pushing through while this cold weather tries to push us to our limits? I mean we all have our tips and tricks and if we share them surely we will all feel a little better?

  1. Keep hydrated: It is not easy to keep hydrated, drinking 2 litres of cold water a day is not easy when you feel cold. I keep a glass beside me at all times and I know if I refill it four times a day then I have had my quota. It has mermaids on it and that helps very much!
  2. Hot drinks count: Keeping warm is as much about our intake as what we wear, however I struggled making hot drinks because of standing by the kettle and lifting it. But then someone on twitter said they bought this kettle by Breville that is more like a coffee machine, you don’t lift the kettle you put your cup under it! Also, it boils in seconds so no more standing for long periods of time which is incredible it saves me energy because of that and it is so much safer because you are not lifting and pouring boiling water…plus it is in the sale at ASDA which was a big help.
  3. Bundle up: Yes it might sound silly, but layer your clothes and there are lots of cute blankets for sale out there, like I got a very cute mermaid blanket from New Look before christmas which is so warm and cuddly! I am sat here in so many layers and blankets, and I even wear fingerless gloves in the house to help my hand pain!
  4. Turn up the heat: By this I do not only mean turning on the heating or the fire, but also things like heating pads, hot water bottles etc can all make the difference between being in pain and feeling good. I also often go to bed early this time of year, I have the electric blanket on and a fleece blanket as well as a thick quilt and it is so nice to lie there warm and safe to read or watch TV.
  5. Stay in: Most of the time I love to go out, it doesn’t happen often because my husband works, but if he offers even to get in the car and wait while he goes to the shops I am up for it. However, sometimes we have to think about the weather, if it is cold, or icy then going out can be a risk too big to tackle. If us spoonies get a chill, or fall then it can take a lot to recover so don’t be afraid to say no and stay in the warmth and be safe.

So these are some of the things I do, what do you do to keep warm and comfortable this time of year any tips and tricks gratefully received.

Namaste xxx

Photo by Konstantin Planinski on Unsplash

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

 

Photo by Xavier Sotomayor on Unsplash

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

Photo by Erwan Hesry on Unsplash

Hey everybody!

Well it is that time of year again, I have cards to make, presents to wrap and right now I just want to fast forward to January and be done with it! Now do not get me wrong I am not a Christmas hater and I am not one to be compared to The Grinch at all! In fact,  I always loved this time of year and looked forward to seeing my family and giving presents to people I love. I enjoyed the cheesy films and decorating the house….

Then my Grandad died, and my parents split, my Dad now has a new family he is spending Christmas with and my mom is spending it with her friends and my Nan is staying in the home she now lives in for her dementia. This will in fact be my first Christmas not eating dinner with either parent or my Nan, me and my husband are going to be eating Christmas dinner together with our dog in a local pub.

I have decorated our living room, but that was so tiring and the added time and effort it takes to clean now I have extra things to move makes me wonder why I even bothered! I have not yet recieved a single card, and no invitations or planned time with friends leaves me feeling extremely lonely.  I feel very lost and nothing feels right and I have this unsettled feeling all the time which is triggering both my depression and anxiety and overall I am just lonely and miserable!

However, I am not the sort of person to give up and I am putting a few things in place to try and keep my mental health under control while I navigate this time:

  1. Meditation and prayer: I am someone who tries to keep myself centered and I do that by looking to God. I try to spend time every day meditating and talking to God, my faith is something I take very seriously and it really helps me. Now I am not trying to say everyone go find God, but I am saying we all have something that helps keep us grounded whether that is a best friend, favourite song or your faith. Concentrating on and holding onto this really helps in times of trouble so don’t knock it until you try it.
  2. Exercise: Depression wants us sitting around feeling useless and doing nothing, I find walking around my living room, doing Yin Yoga, or just dancing to a song I like are all things that can really help shake off depression even just for a little while.
  3. Keeping busy: It literally took me most of today to work up to being bothered to write this blog post, but that is the depression not me who loves writing my blog. It is best to keep busy in order to stop those negative thoughts clouding in and taking over. No matter whether it is learning a new hobby, reading or just planning what next year has to offer try to keep your mind from taking over!
  4. Mindfulness: Now this is simply taking a moment to concentrate on this moment without judgement. Just stop and take a breath, take in your surroundings and stop those thoughts it really can change everything to just step back and realise we live in this moment and not in the past or future where depression and anxiety live.
  5. Be thankful: I try every day as I get into bed, to list things I am thankful for over the day. Things like doggy cuddles, cups of tea, being warm, not needing to nap, etc. It really helps to stop looking at what we do not have and starting to appreciate what we do have. This time of year adverts are everywhere, people on social media bragging about buying so many presents, and movies that show the ‘perfect christmas’. In reality, nobody needs 500 presents, kids just want to be loved, and perfection does not exist. Be thankful for what you do have and can do and stop trying to keep up with the Jones’!
  6. Avoid adverts: This is related to the last one, but I turn off or mute all adverts on TV and you tube, I do not want those toxic 2 minutes in my life! They make me feel like I want so much and none of it is actually needed! Take the pressure off by turning away from adverts and instead take those moments to be mindful, or cuddle the dog!

I hope these small things are manageable for you, and I hope this holiday season is better than you imagined, and if you ever need to talk my emails are always open.

Namaste xxx

  • Samaritans (116 123) operates a 24-hour service available every day of the year. If you prefer to write down how you’re feeling, or if you’re worried about being overheard on the phone, you can email Samaritans at jo@samaritans.org.
  • Childline (0800 1111) runs a helpline for children and young people in the UK. Calls are free and the number won’t show up on your phone bill.
  • PAPYRUS (0800 068 41 41) is a voluntary organisation supporting teenagers and young adults who are feeling suicidal.
  • Depression Alliance is a charity for people with depression. It doesn’t have a helpline, but offers a wide range of useful resources and links to other relevant information.
  • Students Against Depression is a website for students who are depressed, have a low mood or are having suicidal thoughts.
  • Bullying UK is a website for both children and adults affected by bullying.

Hey everyone!

So I am on antibiotics at the moment and they are really making me feel awful! So I got up this morning and thought I would order Unrest on Amazon and give it a review.

Unrest centers around Jennifer Brea and her husband who are both intelligent and adventurous people who love travelling and as I put it ‘grabbing life by the balls’. Then Jen got sick with a virus and their lives changed drastically as she became sick with Chronic Fatigue Syndrome or Myalgic Encephalopathy. We follow her journey as she records her life, her struggles to cope with her husband becoming her carer, we see her interview other people with the illness all over the spectrum, and we see her husband caring for her.

This is a very raw documentary and I must have cried so many times while watching it because I saw myself and my relationship with my husband so clearly on the screen. This film shows Omar feeling lost and alone as he tries his best to support her, it shows him willing to try anything to help and it also shows that it is so hard to see someone you love suffer and not knowing how to help.

I was so moved by their stories, but it was when she spoke about the history of unknown viruses that cause chronic fatigue in the past that hit me hard. Hysteria especially was hard because it is clearly Chronic Fatigue when you see the old medical videos and photographs and yet these people were locked away in mental institutions and treated terribly because back then doctors thought it was all in our heads…

Then we hear about Karina, a girl whose parents cared for in their home in Denmark, then one day the police took her from her bed to be cared for by a doctor because they believe it is all in her head and her parents are making her sick! Yes these horror stories we like to think do not happen now really do and I know I am being treated like it is in my head by family and doctors!

Unrest is stunning to watch, moving in so many ways, it showed the good days and the bad, it showed the money we spend on made up cures because we get desperate and it shows that when family become carers it can make things so hard. I really found myself coming away from this film feeling thankful that I am not alone, that other people out there know how I feel and all of our stories are real and similar and if only doctors would watch maybe things could change for us all?

I really hope people get to see this powerful and important film, this illness and illnesses like it have been overlooked and hidden away for too long. So go watch the film online HERE is a list of where and how, share it and let’s stop hiding this illness and let’s get our stories out there so no more people go missing.

Namaste xxx

Unrest official site

Photo by Damian Zaleski on Unsplash

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

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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, 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.

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