Trying to live with Chronic Illness

fatigue

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Dealing with Loneliness in Summer

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Hey everybody!

Here in England we are having a heatwave, social media is full of people spending time with friends, and almost every night I can hear the sounds of BBQs! Usually this is a time when people get together, and because of this I think my loneliness is making itself known.

As you all know, I am working on myself very hard at the moment, meditating like mad and I am currently reading the bhagavad gita. I am trying my hardest to grow and learn and to come to be content in the moment and with the life I have instead of wanting and yearning for what others have. To be honest, I am changing a lot and I can feel how meditation and mindfulness is really helping my depression and anxiety. I am really proud of myself, but I know I still have a lot to learn but regular readers will know I love to learn new things.

However, I am mainly housebound, and with the heat I cannot take the dog out because I keep having dizzy spells. Just a few days ago my husband took me out for a drive in the car and a short walk and that was the first time I had left the house in nine days! This realisation really showed me that I am so very isolated in a lot of ways by society and that really makes me sad.

Last week, on the blog, I talked about how we all need to be kinder to one another and look out for people around us who need us. I wanted to try and encourage everyone to make sure the neighbours and family members around us are OK, but that is lacking in my life. I see people around me who don’t live far having fun and I need to be honest and say it makes me feel really left out and alone.

I have the most wonderful husband who is home as much as he can be, but he is out of the house 12 hours a day to travel to his job and work an 8 hour shift. This means most of my time is spent alone just me and the dog, who strangely enough keeps me sane. Now I would love it if my husband could be home all the time, but right now that is not really an option. So most of my waking life is spent alone, and I am sure that I am not the only one in the chronic illness community.

Now while doing research on loneliness I found that The Red Cross is running a Get Help with Loneliness Campaign because they have seen how being alone too much can affect a person’s mental health. I checked but there is nothing available in my area, but maybe there is where you live? If you are able to you can also volunteer just a few hours a week to spend with people like me who face loneliness and isolation from society. Let me know below if it is something you would use or if you would like to volunteer with them all the information is on the page above.

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

A change is as good as a rest

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Hey everybody!

Well we have had quite the eventful week and I really thought it would leave me with a lacking in spoons and increased pain and overall feeling dreadful…I am still waiting for the bump! I guess a change is as good as a rest?

Not that my fatigue and pain are not increased, of course they are I still have the same illnesses. However, it is my mood that is different and my outlook, I find myself quite happy to rest instead of feeling like a useless lump and to be honest it is so shocking to me I have to talk about it!

Earlier this week we had a decorator come for three days to wallpaper and pain our hallway, it is now pink with birds all over it and I love it! It has made the hallway so welcoming and warm and it is so cheerful I just love looking up to see it. I will be honest though, having someone in the house did make my anxiety really high, but I managed to make small talk and felt really proud of myself.

I took the week off the computer, I rested and I even went to a Hindu meditation class where they introduced us the the different forms of yoga and it was really inspiring. I loved hearing about the Bhagavad Gita and how to apply it to my life it really helped me to feel grounded with my spiritual journey.

I am enjoying the journey and I am trying so hard to use the things I am learning, like chanting, meditation etc to battle my anxiety as well as feeling God around me much more. I am also really finding myself feeling more in control of my thoughts for the first time in a long time, and I feel actually happy…a strange feeling that I am really not used to and not quite sure how to deal with, which is kind of sad! I mean surely feeling happy should be how we feel most days, but since I was a teenager I have struggled to feel actually deep down contentment, but I have always longed for it.

I have always heard the saying ‘a change is as good as a rest’ but I guess with my anxiety disorder I always shied away from change and in fact usually it makes me lose control. But right now, I feel so much love and support from Lee who is on this spiritual journey with me, and from God who I feel is actually there walking beside me in a way I never felt before. It has been a difficult week I cannot lie about that, it is hard to be open to new things when most of the time the thought of going outside alone gives me a panic attack.

However, here we are, it is Monday and I am sat writing this to my friends and I am smiling! I know it is crazy to imagine because my upper back and neck are very painful and I feel tired but yeah I am smiling. I am incredibly proud of myself for facing these changes with faith and being as open to them as was safe for me. My husband was right by my side every day that the decorator was here, though he did not sit with me and left me alone so I could talk if I wanted to. He also went to the meditation class which I was so thankful for and I felt so supported and loved.

I hope if you all have change to face you can push passed the things that hold you back and keep moving forward so that you can make your dreams and passions a reality. Ill health does make it hard to be happy especially mental health issues, but finding faith, in God, a medication or a person then you can conquer the world!

Namaste xxx

 

Opening up to more

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Hey everyone!

A few days ago I went back to see my psychic again, she is so lovely and she answered everything I needed to know. If you didn’t know I am learning to be a psychic myself and to watch her work now after training and learning was so incredible. Angela is so talented and she really inspired me to keep working because my future is a lot brighter if I use my skills and keep opening up to the world.

When I look back to when I first became sick and had to leave nursing, I remember thinking that’s it then. I tried other jobs but nobody seemed interested in helping me stay employed and I kept losing jobs because I couldn’t remember things and I struggled to move fast enough. Eventually, I gave up trying and realised I was better staying home and trying to keep my body as healthy and keep it going as long as I could. Work was taking valuable energy and causing pain, it made no sense to keep trying just to be told it was not good enough.

Thankfully, jobs are not allowed to do that now and I hope that people coming up behind me are being treated better…yeah I can hope!

When I saw Angela though she spoke of my future in such a wonderful way, she answered my questions about being on the right path and she spoke about me and my husband possibly working together. She said I could help a lot of people if I apply myself and really learn all I can, I came away feeling as if she had once again opened up the universe before me. Now that might seem romanticised and silly, but after giving up and thinking I was never going to be useful to society, well that really inspired me and that is exactly how it felt.

I have been finding my world slowly opening back up over the last few years as I have begun a spiritual journey, started taking this blog more seriously, and started working on learning all I can about my psychic abilities. I have a lot of faith in God, I always have, and I know in the bible it says He has a path worked out for every one of us. For a while I forgot about that and lost sight of the fact that my soul need to flourish and grow in order to move forward.

I also was contacted last week to say that this blog was selected by Feedspot as one of the Top 10 UK Fibromyalgia Blogs on the web which of course is incredibly inspiring to keep going and really boosted my confidence. You can check out the list and find other good Fibromyalgia blogs HERE.

So I see the world, the universe, well everything opening up before me, I feel excited and inspired by what could be in my future and I hope everyone out there realises our lives are full of unlimited possibilities if we just trust.

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

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

Pushing through grief

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Hey everybody!

So first of all I want to apologise for not updating my blog for a week or so, unfortunately I needed a little time to look after my mental health after losing my Grandmother. She was a big part of my life, in fact I think I talked about her in my last post and I am finding the grief hard.I have taken losing her and my Grandad pretty badly because they were two people who taught me so much and loved me so completely and without conditions.

It is horrible because I have moments where I forget they are gone and I get a idea to call or suggest we visit, but then I remember…

I think anyone who is dealing with grief knows that feeling, like hearing it all over again, and right now it is hard because the funeral isn’t until the end of the month so that is looming over me. Added onto that I have my birthday this week, I am turning 40 and most people I wanted to celebrate with me cannot make it and I think I just have a lot of feelings from childhood parties gone wrong kicking up again!

I think a lot of people who suffer with anxiety and depression know this well, something happens and instead of just wanting to deal with that one thing your brain decides to think of a million other times in your past. Negative thoughts and memories are something I deal with every day and something that I honestly fight with and battle with constantly. Most people who met me would not think that, but even as I smile inside there is a million thoughts and feelings fighting to take that smile away from me. I am in the process of starting therapy again, finally after a life with Generalised Anxiety Disorder and Depression since the age of 14 the doctor thought I might need long term therapy wow never would have thought it!!

Opening up to someone new about your past and the issues you have leaves you feeling so exposed and raw, so losing one of my close family at the same time has been very hard. I think it is hard at any time, but talking about it along with retelling my past has left me feeling very small and lost at times.

I really hope however, that I can push through this time in a healthy way and this is how I am going to try and do that:

  • Talking – I think it is important to be open and honest about my thoughts and feelings at the moment and I am talking things through with my husband and therapist because I cannot hold this all in.
  • Meditation – I try to meditate every day to protect myself and to keep my mind clear, it gives me a chance to slow down and just concentrate on my breathing. I also found some amazing guided meditations for grief on You Tube.
  • Mindfulness – Staying in this moment and not getting lost in emotions and thoughts is something that does not come easily, however I find it helps my anxiety, which is thinking about the future, and depression, which is thinking about the past. I have been working on this because I am a Buddhist, but it is also a big part of what my therapists have suggested.
  • Keeping busy – Now this one can be difficult with pain and fatigue, both of which are worse because of the grief, but it is important to at least be reading or watching a TV show sitting and thinking is the worst thing for someone suffering with their mental health so definitely bear that in mind.

I hope this post has not bought you down or upset anyone, but I think far too much in our society we are afraid of death and talking about mental health issues and right now that is what is happening in my life. Yes it is difficult, but the more we talk about it the less stigma there will be and more people will be able to get the help they need without worry or fear. Next Monday I will tell you all about my wonderful birthday celebrations and hopefully I will cope with turning 40 without running away hehe

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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