Trying to live with Chronic Illness

Buddhism

Photo by Dustin Lee on Unsplash

Hey everyone!

This week I wanted to talk about fatigue and how hard it can be to just want to get out of a warm, comfortable bed when all you want to do is rest. When you wake every morning in pain, your joints stiff, your head aching and every limb hurting on top of extreme fatigue it is so hard to want to get up and get your jobs done.

I spoke on this weeks Chronic Illness Video (HERE) about how fatigue feels, it is not just being tired, or how you feel if you couldn’t get comfortable at night so check that out if you think it is! Fatigue is deep inside extreme tiredness that makes it impossible to want to do anything.

Now if you have been reading my blogs for a while, you will know that I am a very motivated person and if I set myself goals I will do anything to achieve them. The problem comes, when your body is heavy and tired and you cannot think straight enough that you are still a person who wants to do things and be a human! You have dreams and goals and when day after day you are not well enough to achieve them that can be incredibly demoralising and depressing.

It has taken me a long time to come to terms with this, I have been sick since 2002 and I have just started to be able to do it! But, being patient and not letting guilt take over can be the first steps in accepting what you can and cannot do and then coming to peace with your illness and your goals.

In Buddhism, acceptance and peace are the main goals and applying that to my illnesses has helped me to relax that inner need to do the housework every day and do a yoga routine every day and take the dog out and cook healthy dinners and…..There will always be ‘ands’ but take a breath and remember that being the perfect person is not something we can ever achieve.

I am reading a book called ‘How to live well with chronic pain and illness: A mindful guide’ by Toni Bernhard and to quote her:

“The unrealistically high standard at work here is that we don’t think we should be chronically ill. Even though 130 million people suffer from chronic illness in the United States alone, we live in a culture that repeatedly suggests that, with proper diet and lifestyle changes, no one need be sick and no one need be in pain. When we’re not living up to what we perceive  to be that cultural standard, we feel embarrassed.”

For me that really hit the nail on the head, it is society constantly telling us that we should be perfect, loved, and happy if we just eat the right foods, do the right exercise, everything will be sunshine and roses! But when famous people, who the press tell us are perfect and to be like them, are committing suicide, taking drugs and turning to alcohol to cope…can we really expect our lives to be perfect?

I think what I am trying to say is, do not let society make you feel less because you couldn’t do that load of washing, or you were in too much pain to walk the dog! Be prepared to have days, sometimes weeks even months, when all you can do is rest and do not feel less because you need to just sit.

My best advice is to use a slow cooker and have meals prepared in the freezer, have family help you to do things and do not let anyone ever make you feel less because I know you are fighting every day just to want to get out of bed and some days that is enough!

Namaste xxx

Today I talk about how hard it is to get back to the way things were after a flare of my fibromyalgia Hey everybody!

The last year has been incredibly hard for me, I lost my Granddad, I had a flare of my fibromyalgia and my depression crashed down on me. I stopped really caring about how my house looked, how clean and tidy it was, I stopped looking after myself and just got lost in symptoms, and depression.

After recently seeing a psychic (HERE is a video about that) I found my depression and grief lifted and I started to realise that I wanted my life back. I might have constant pain, anxiety, fatigue and neurological problems, but I like my life and I am happy. I don’t expect a lot from life and all I want is to get back to daily yoga, meditation, and housework and to have enough energy to cook a healthy meal in the evening.

So how am I going to manage this when my flare has left me with more pain and fatigue though the worst of it has eased along with the depression. Well, if you have been following my blog for a while you will know that I am a planner, and this is how I am going to get my routines back.

I have my week ahead planned, I know what I am going to do and how, and that has left me feeling far less worried and overwhelmed. I have remade up my natural cleaning products and I am back to my determination to lessen the amount of chemicals in my home. I am hoping that with my new plans, my determined nature and lots of breaks I will be able to keep up with the daily routine I started today.

I woke up and took my medications at the usual time and then hit the yoga mat for a gentle 30minute practice, I then lay down and followed a 15minute guided meditation and then a short bible study. I then ate a yummy smoothie bowl and rested for a while before cleaning my living room. By the time I had done these things it was after 1pm and I was amazed at how long these few things took me, however I felt incredibly proud of myself for taking my time and listening to my body. After a shower, I came here and wrote this blog, I am hopeful that by breaking things into shorter tasks and being organised I can do this routine every day.

What I want to say is, life is hard with chronic illness, they grind you down and can become so hard to live with, but if you keep pushing and keep motivated you can still achieve your goals!

Namaste xxx

My husbands new job has changed my routine which causes a lot of stress and anxiety for me. Today I talk about how I am coping Hi everybody!

At the moment I feel a little like someone just tossed everything that feels safe in my world up in the air and I am running around trying to catch everything!

My husband is a police officer, but he has epilepsy and if he has a seizure he will be put on restricted duty. Also, because of his work he gets very stressed, it is high pressure and he gets a lot of hate from the public etc. So when the headquarters set up a job for officers that are on restricted duties for whatever reason my hubby went for it and got it.

It has longer travel times because he is further away and it is in the city centre so he takes public transport rather than driving. This is of course cheaper and gives him time to read and relax on the train which is great, and the job itself is office based and much less stress so I am really thankful for that.

However, I have an illness called Generalised Anxiety Disorder, which basically means I have panic attacks and fear over things that most people have no issue with. My anxiety is always there and I have had it all my life so I am used to it and day to day meditation helps me to cope with it. However, this new job means that Lee is not at home much more than he was before.

On an early shift he used to be home around 4pm and I would cook and get sorted while he had a shower and it worked really well he was always more tired but we had a system. Now he is home about 6-6:30 and by then I am in pain, extremely tired and unable to stand long enough to cook. By the time he has showered it is time to me to get into bed and it would be impossible to cook for me and I do not want Lee to have to cook after being at work.

Cooking is really important to me, I worked hard for occupational therapy to say I could cook and I have researched a lot so we have food that is not processed or junk food. I have found twice in his first week at work that we have ordered in food because I was not up to cooking so we for sure need a new way! I am frantically trying to find good vegetarian slow cooker recipes which is not easy because there are not a lot of imaginative recipes out there for non-meat eaters!

On a late shift he is home now at least 2 hours earlier which is such a blessing, but he leaves now at about 10am and not 1pm like he used to! Mornings feel like a scramble as he rushes to get ready in time and I struggle to wake up and get my body moving! I am not good in the mornings because my body is stiff, and my fatigue is awful first thing it takes me a good hour or so to wake up enough to get out of bed.

All this change is hard for me to deal with, I am so thankful for this new job and so proud of my guy I could burst, but inside my tummy is like a washing machine and my nausea is pretty bad as well. I am going to take the next few days Lee is off to find some slow cooker recipes I can make on his early shifts so I am not standing for a long time, and finding a way to get our mornings running more smoothly.

I think it is important when anxiety is taking over to breath, it is so easy to forget and let those shallow, fast breaths take over which is part of fight or flight. However, that breathe is extremely unhealthy and unnatural to have all the time, I use the things I have learned about breathing through yoga to slow and even out my breathing so my body can relax and I am not struggling so much with that side of it.

I also step up mindfulness and meditation, both things that stop my mind wandering to imagining terrible things and letting those negative thoughts that tell me I am letting myself and Lee down etc from taking over. I have learned through these things that I am in control of my thoughts they are not in control of me and that was a big lightbulb moment for me with my anxiety and depression.

Humans hate change, we fear it and with my anxiety unnaturally strong anyway it is important for me to thing logically and to remember that by talking with Lee and by organising myself better these things will soon fall into place.

Namaste xxx

I talk about how having long days stretching before you can be daunting, and how I have avoided boredom and becoming stagnant in my life. Hey everybody!

So I stopped working about 15years ago, the decision to stop was not an easy one for me to make. When I had to leave nursing I had several jobs in shops and as office assistants, but in the end I had to step away from it all because I just could not cope. My pain and fatigue made it difficult, as well as my brain fog which if anyone suffers with it, makes it impossible to learn new things and retain them well enough to do at a job when you throw in social anxiety!

At first I just kind of fell into a life online, I had just started using the internet at home and I would spend all day on myspace with my friends roleplaying. This is writing as TV and film characters, yes it is as geeky and as fun as it sounds and I still do it on another site.

However, after I married Lee I started to get out of my general depression which had me living a nocturnal life and speaking to hardly anyone. I started to open my eyes and realise that I needed more in my life than that and I wanted to be a better person.

I started to do yoga, and studying about Buddhism and it opened my eyes to learning for fun. Instead of the pressure that came from a school environment and knowing about exams and assignments, instead of a work environment where I was being watched by supervisors etc, I found it so much fun! I started to open my eyes and realise there is more out there than I thought.

I taught myself very simple HTML and started running a few fansites for actors I love and I still have one for Olivia Colman and one for Michael Rosenbaum. The skills I learnt doing this, led me to starting this blog, which was again I wanted a way to improve myself and to give back to a community of people who are often pushed aside or ignored by society because I think people do not like to face illness or how it could change their lives. And now I have started my own You Tube channel and I am starting to learn how to edit, this is probably my biggest challenge but I am excited to see how I can grow and challenge myself.

I have heard so many healthy people say to me “Wow you are so lucky you don’t have to work I would love to be at home everyday” and yes they probably would for a day or two, but after a while they would be so bored! I think it can be easy to forget that just because someone is sick they are still a person with dreams and goals. I would love to say that being home alone all day while my husband works is great, but I am here not chilling, I am trying to do the housework and exercise and stay sane while battling pain, fatigue and mental fog that makes my memory so very bad!

I will say this though, if you have a dream, or something you want to learn go for it! Where there is a will there is a way!

Namaste xxx

Today I talk about materialism and how I am trying to stop turning to things for happiness Hey Everybody!

So I think I mentioned this in previous posts, but I was an only child and because I had no siblings I was kind of spoilt. If I wanted something either my parents or my grandparents would make it happen. I was always grateful for this, as a child you have no idea about money or it’s worth and getting presents make you feel happy.

However, as an adult suffering with depression I found myself turning to shops to make me happy. Because of this I have accumulated a lot of things that I do not need, I have spoken before about my DVD collection! There was a time that I loved seeing my things all around me, but over the last year I have come to realise that I do not ‘need’ most of it.

I think it was discovering about tiny homes on You Tube that helped me realise that materialism meant I was outgrowing my home and it was more than enough room for me and my husband. The decision to ‘spring clean’ my life was one that came surprisingly easily and I am thankful for going through with it, though it gave me anxiety.

Over the last couple of years I have been studying Buddhism, and it is important in that philosophy not to hold onto material goods. This can be difficult to put into practice, however I realised that buying new things did not ever help my depression. in fact there were times when it was made worse because I spent too much or regretted what I had bought.

Depression often makes us feel like we are not worth much, and TV ads, movies and celebrities often like to sell us the idea that buying things will make us worth more. However, I have found since starting to move away from this sort of thinking that it feels good to not buy things because of what others tell us we need. I know those shiny new shoes, or purse that celebrities have look good, but do you really need more than one?

It can be tempting to jump into cleaning your house out, I would love to sweep through my house and get rid of the things that no longer serve me, however I suffer with fatigue and I have to be careful. Because of this I chose to concentrate on one room at a time, I started with the room that has all my books, DVDs and collectables.

I decided to go through my things over a few weeks a little at a time, it is important to know your limits and not push yourself too far. I actually took the whole day to sort the room, and I took a nap half way through the day and I made sure I drank a lot of water. I also used my slow cooker to make sure that I ate well and not give in because I was tired and order take out!

I also would stay away from window shopping, I accumulated quite a long wish list on Amazon, but it was just temptation I did not need. Always remember, material goods might feel good in the moment, but they do not measure up to self-worth, you need to be your own best friend and treat yourself to more than just the latest gadget!

Namaste xxx

After a shopping trip I realised how far I have come and talk about looking back on things positively Hey everybody!

So I am English and I feel as if we are as a society taught that feeling good about yourself and having pride in the things you do is a bad thing. English people love to moan and be negative about everything it is just in our nature and something that I always bought into! Negative thinking was how I communicated with myself and I had a very low opinion of myself because of it.

When I started to study Buddhism and started to realise that I cannot have good energy if I am always negative, I started to work hard to change my thinking. Counselling helped, but it really came from me to do the work of learning to think differently. It took a few years to achieve it, and yes I sometimes fall into old patterns, but now instead of looking back on my day and thinking of all the bad and wrong things I did, I try to think of the good things.

Now yesterday me and my husband along with my dad and his girlfriend went for the day to a large shopping center about an hour from where I live. We tend to go every 6 months or so and I have to be honest in the past I would let Lee talk for me, and I would spend a fortune on junk!

However, this year I am working hard on not being materialistic and on cutting down on the things in my home that do not serve me. So I did not come home with a million bags of stuff and feel good for half an hour, instead I bought a couple of make up products, a t shirt and some Lush bath products because baths really help my pain. I avoided shops like Primark where I tend to buy a lot of clothes I do not need and instead just enjoyed a lovely day out!

The first shop we went into was Debenhams because I heard they now stock Kat Von D products…but they are not getting them there for another couple of months! Instead I went to the Urban Decay stand to have a look because I love their pallets and though they are out of my price range I wanted a dream! However, I soon got chatting to the woman there who told me one of the pallets was on offer if I bought it and a lipstick I saved money and got a free gift.

Now the fact that I bought the offer, and tried on some lipstick there is not the point…the point is that 2years ago I could not even speak to someone I did not know! I would ignore people if they spoke to me or I would have a major panic attack, it was not until I had bought these things and come away did I realise how far I had come! I did all the talking, Lee just pushed me in the wheelchair, I did not panic and I chatted to her without even thinking about it.

I also managed to go into the shop Claire’s accessories, which for wheelchair users is impossible to navigate because all the stands are so close together. Lee stood outside with my chair and I went into the shop on my own, picked out what I wanted and paid all by myself! I was beaming when I came out and even now I feel so proud of myself for being able to do this.

Anxiety is overwhelming and I have it all the time about everything, the world to me is a big overwhelming and terrifying place! However, I am starting to learn to break the surface and do things like this for myself.  Never give up, set goals that you can achieve that are small and work up to the big stuff and above all remember every small step is a big achievement if you suffer with chronic illness!

Namaste xxx

I talk about getting back to daily yoga to try and fight depression Hey everyone!

So last post I spoke about my recent realisation that depression has crept back into my life and how I have been inspired by a book I read and film I watched to fight it. I think this is something a lot of people get wrong, depression is a mental illness that is incredibly sneaky! You can go for councelling and read books and do the steps but it is, for people who suffer which chronic depression, a daily fight. I wake in the morning to a noisy brain, anxiety and negative thoughts that make it hard to even want to get out of bed. Every single day I have to fight through all of that to get up, get showered, to work out and just to not hide in bed!

I have had a breakdown and been on suicide watch, I have hoarded medications ‘just in case’, and through it all I have wanted more! If I had ended things there I would have not met my husband, I wouldn’t have my dog, I would have missed out on time with my friends and family, and I would have not heard they got my diagnosis wrong!

Now I am learning about alternative therapies, and I have a very different attitude to life and to me daily yoga is a big part of my mental health being good. Over the last year I had slipped to maybe once a week and that to me was a big wake up call when I realised. I knew I needed to change things, so I went to my online Yoga teacher on You Tube ‘Yoga with Adriene‘ and I chose her 30 day challenge to get me going!

This is 30days of yoga and it is a playlist of 30 videos, one a day that I am committed to finishing, however the way I look at this is a bit different to how she meant…

I have chronic illnesses and though I want to do yoga every day, if I am going out one a day, or I am going to yoga class that night there is no way I can do yoga in the morning it would kill me! So I look at it as 30 videos and I am going to finish them all in as little time as possible, so far I have done 4 videos and that has taken me 5 days because yesterday I could barely think straight enough to get out of bed! I have to be smart and look after myself, however that does not mean I am not going to do my best to do a video a day and I am really hopeful that I can complete it!

So far however what means more is how I feel, I am much more positive, I have started doing housework and eating better again, I am sleeping better and overall my pain has improved. Yoga and meditation go hand in hand for me, they are part of my beliefs as a Buddhist and I know from reading Whole Health Life, and the Connection (review HERE) that these are important to lower stress levels. I will keep you updated how I get on but please send me encouragement on twitter, Instagram, here all the places!

Namaste xxx

I talk about how depression had slowly come back so that I had hardly noticed and the steps I am taking to get back out the hole Hey everybody!

Over the past 5 or so years I have been working hard to overcome my mental health issues and find ways to push through them. I had counselling and they taught me to practice mindfulness, to be in the moment and not live in the past. I turned to Buddhism and started to study how to get well. I also got to a point with my anxiety where I could talk to people I didn’t know and take my dog Gizmo on short walks by myself.

Then at the beginning of last year it became clear that my Grandad was dying and it is coming up to a year since he passed away. I can honestly say this has been the hardest year of my life, I have been incredibly blessed in so many ways and yet he is always on my mind in one way or another.

Grief takes time and patience, and it is something you cannot rush or push your way through. However, it is something I thought I could avoid so I have not really faced it, I have kind of pushed it down and carried on trying to be myself. The problem is that I was tired all the time, I was not meditating or doing my yoga practice, and I was lying in bed until lunchtime quite often so that I could just wallow in it.

My last post I reviewed a book and movie, and when I watched the documentary with my husband I realised that I had been avoiding things. I realised that if I carried on my illnesses would get worse and I would end up suffering and that would be something my Grandad would never want for me.

I read THIS ARTICLE today where it has been found that worldwide depression is the leading cause of disability worldwide! Todays society and lifestyles are not working for us and we all need to really look into ourselves and those we care about. If we do not start to change our lives we will all be in trouble and it just reaffirmed what the Connection movie and Whole health life book said! I really think depression is so overlooked and is easy to hide if we want.

So when I realised what I was doing and that depression had crept back into my life I immediately took some steps to start getting out of the hole so if you find you are depressed or someone close to you is here are some tips:

  1. Talk: I straight away went to my husband and opened up about how I was feeling, what I thought the problem was and what I wanted to do. This can be the hardest part, I didn’t want Lee to worry or get upset, however he was there for me he listened and he gave me advice. He agreed that he thought it was depression and that he had been worried but afraid to say anything, and if you are worried about someone like he was, reach out it means so much.
  2. Make goals: I hate to say it but getting into good habits is not easy, I wanted to get back to daily yoga, housework, getting outside the house, eating regularly, and making sure I get up by a certain time every day. I talked about them with my husband and doing this simply keeps you accountable and gives you someone on your side who will be there to support you and give you a little nudge if you try to get out of it! Make the goals you set small and manageable, it could simply be I will get up and take a shower every day…no matter what the goals are do not make them so ambitious and big that you are going to set yourself up to fail because you will just feel worse.
  3. Talk to your doctor: I am on daily antidepressants anyway because my depression has been chronic since I was 14, but talking to a doctor can help so much. They can refer you to have counselling, maybe put you on antidepressants for a short time to help you at first, and even just be someone to talk to if you have nobody else. This is especially important if you have been turning to harmful behaviour to deal with your depression such as eating disorders, alcohol or drugs, self-harm, etc.
  4. Do research: We live in a world where information is literally at our fingertips, so get online and look up ways to help yourself, read books, join a group online, you can even email the Samaritans now! I am going to start reading a book I bought a while ago about dealing with grief, there is so much out there so pick what works best for you and go for it! Learning more about depression and how to help yourself is important because at the end of the day if you do not do the work you will not get better!

Lastly, if you are struggling, if you have words of encouragement, or if you simply need to talk drop me a comment below, or email me this is a safe place and I am always here for anyone who needs a friend.

Namaste xxx

How I deal with having social anxiety and the times I have to go alone to appointmentsHey everybody!

So I do not drive, and my husband has epilepsy so if he has had a seizure within the last year he cannot drive either. Thankfully, I do not leave the house very often and we have a great support system of family and close friends who take us to hospital and doctor appointments.

Now I have always had social anxiety when I was a child my parents and the people around me just said I was shy and sensitive. I was often forced to do things at school that would make me physically sick like talk in front of the class and even going to a class alone would give me so much panic I thought I was going insane!

However, when I got older and other mental health issues like depression came into my life and I had counselling I came to understand more about social anxiety and how it is not just being shy or sensitive. It is crippling and caused me to lose friends, and avoid things like speaking on the phone, talking to people at the supermarket etc just to avoid the overwhelming panic that this brings.

When I go to the hospital my husband will usually try to organise it around his work, and this is because of my anxiety but also because of my memory problems. I have a lot of issues with remembering people’s faces, where things are like how to find the exit after leaving a room, and knowing what happened after an appointment and what happened can be so hard.

However, this is not always possible and this happened yesterday with my physiotherapy appointment I had a lift from a family friend and when he takes me he will wait in the car with my dog while I am inside. So this means I have to navigate a lot on my own, talking to receptionists, taking the lift, sitting alone waiting, trying to remember what is said, explaining myself, and navigating back to the car. On top of this I needed to go to the pharmacy and deal with that so my anxiety level was on 11/10 and I was moments from a panic attack all day!

My anxiety started the night before, where I lay in bed thinking through the route through the building and my head thinking up scenarios like me falling over and people laughing, me getting lost, people staring etc. When this happened I used lavender pillow spray to help calm me down and help me to sleep. There are many recipes to make your own on Pinterest and also you can buy things like this online or in chemists and essential oils shops.

All day leading up to the appointment was stressful as I tried not to forget anything and I think I changed clothes about four times! Thankfully I use a backpack so I can take more things than I need which helps calm me down a little. I tend to carry things like tissues, cough sweets and lipbalm because I worry I will get a runny nose, or cannot stop coughing and also I lick my lips a lot when I am nervous! If you have triggers just carry things that help in those situations will ease your fears so much and certainly a trick I learned as a teen taking exams!

As I made my way to the appointment, and waited I used breathing techniques that my therapist gave me when I had counselling which is breathe in slowly to the count of five and out to the count of five and do it counting how many times you can do it without your mind wandering. This is a Buddhist way of meditating and actually how you learn to train your mind to quiet during meditation, it is very effective as you have two sets of numbers to concentrate on and so you cannot panic. The slow and deep breath also helps to calm your fight or flight and adrenaline in your body so you stay calmer.

My fears about forgetting things and explaining things is difficult, however I find practising it a couple of times in my head helps and asking my husband what to say helps. I also always ask the doctor, nurse or therapist to write down what was said, and they usually are more than happy to write a few notes or send some things over to you.

Overall yes if you have social anxiety these things will not take that feeling away totally, however it does help to have these things in your back pocket to use. They take practice and time and effort, but if you are willing to put in the work you can push through and overcome things that scare you.

Namaste xxx

Hello
Hi there I am Beverley, I am a Buddhist Christian trying to find a way to live with Fibromyalgia, Anaemia, Chronic Fatigue, 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 every Sunday.
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