Trying to live with Chronic Illness

Mental Health

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Hey everybody!

First of all sorry I needed to take a little break but it has to be expected when you run a blog with chronic illnesses! Also I had my PIP assessment which is to see if I qualify for a benefit here in the UK and the stress and worry from that has not helped!

However, here I am half asleep and frankly p***ed off!!! My fatigue has flared and I honestly feel like I am trapped inside my body! I try to keep up with my housework and to do things that make me feel human, like shower and wash my face and get dressed, but it is a constant battle! I wake up every morning after sleeping like the dead feeling just as tired as the night before and yet I have things I need to do on that day!

I find myself feeling so guilty when my husband is at work and I am just lying about doing nothing but staring into space. I wonder if he would be happier without me and if I am just a useless lump. Then I have to try and shake off the depression and try not to do an impression of Eeyore so I can hopefully pull myself out of this slump and get things done.

I wish I could say this will be a useful and positive post but honestly I am just fed up! I have things I want to get done, like my yoga practice and bible study and a little housework just like I could before and yet I feel so tired and my body feels so heavy I can barely think straight no matter get jobs done!

So instead of giving out tips and tricks of how I deal with things I am reaching out to the chronic illness community and asking for tips? Do you suffer with fatigue and if you do how do you make sure that jobs and goals do not just pile up while you nap? Leave me some comments here or on social media links are around let me know please? I need something to help before I go mad!

Namaste xxx

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Hey everybody!

Yes September is here, the leaves are starting to turn, and there are Halloween decorations in the shops! It is my favourite time of the year, so much cosier and I absolutely love the relief of getting away from the heat of summer and the settling down of my symptoms.

As I usually do when there is a big change in weather, I have gone through my wardrobe and got rid of things…and replaced them with things from the sales! Usually I buy a couple of things and leave it at that but this time I have decided to change my style a lot more than I ever have before.

My style is usually grungy and hippy with not a lot of focus on what I wear because I rarely go out and even more rarely ever see anyone! However, after watching people on you tube who wear more of a vintage style and are confident enough to wear more feminine and less ‘fashionable’ clothing that can be found in charity shops and antique places.

Now I have always wanted to dress more 1930s-50s not rockabilly, but more authentic? However, I stand out a lot when I am in a wheelchair or using my walking stick and I kind of always wanted to hide away? Well no more!!!

If you watch my latest You tube video HERE then you will see some of the items I managed to get in sales to start off my collection. I am going to be thrifting and keeping my peepers peeled for cheap places to get this sort of clothing. I love that these pieces suit my hourglass shape more and they will not go out of fashion so I will be able to wear them without worry next year.

I have been changing things up a lot in my life recently and it feels so good to get motivated and get my style and our home looking more like we want it to. I feel so much more inspired and motivated, so maybe if you feel a bit stagnent it is time to clear things out and redecorate a room, or just donate some old clothes that you no longer wear?

Namaste xxx

Photo by Nicole Mason on Unsplash

Hi everybody!

Over the last month or so my depression has flared, I have had chronic depression since I was 14years old and usually I can battle it, but sometimes it just gets to be too much. I have often fallen into letting my depression take over and stop me from doing the things I love and enjoy. It can even stop me bothering to shower or clean my teeth and that leads to me just feeling even worse!

I have come to realise that this is how depression works, it stops you wanting to do the things that can help you to feel better. So this time I fought back and followed the following steps as a way to stop it taking over totally:

  • Eat healthy food: It is easy to skip meals and snack on junk food when you feel depressed, but this time I used an app called Lifesum to track my food and to make sure that I am eating the right things and drinking enough water every day.
  • Get enough sleep: Now when you are plagued with negative thoughts and worries sleep often stays away. I have found listening to relaxing music, or podcasts or audiobooks can stop you being able to think and allow you to relax enough to rest if not to sleep.
  • Limit time online: These days this can be hard, but spending too long online, scrolling through social media etc, has been shown in many studies to contribute to depression. If you want to fight depression do not give it the tools to bring you down!
  • Be kind to yourself: This means something different to everyone, but it does not mean shopping and eating! This means small things like taking a bath, using body creams of your favourite scent, having a little chocolate or watching a favourite movie.
  • Fresh air: Getting out of the house for a short walk, preferably in nature if possible, can really help to ease your mind and help you to feel less like a blob on the sofa and more like a human who is struggling but fighting every step of the way.
  • Plan your day: Every day plan a few tasks, no matter how small even if it is make the bed, wash my face, take a short walk. Keeping busy and feeling like you have achieved something no matter how small can make all the difference to how you feel about yourself at the end of the day.
  • Be thankful: Every night as you get comfortable in bed, say to yourself three things you are thankful for, preferably one of them is about yourself. This helps you to be grateful for what you do have and to see at least one good thing about yourself that can poke through the negative thoughts.

These are the things that helped me, and the depression is now starting to lift off me thankfully. What are the tips and tricks you utilise when you feel depressed?

Namaste xxx

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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

Photo by Dmitry Ratushny on Unsplash

Hey everybody!

So this morning I woke up crying, I had slept passed my alarm and my pain was to a point where I was crying. It was so painful literally everywhere that I couldn’t move and I felt sick, I knew I needed my tablets and I knew I had to force myself to eat…not easy to do when you feel like this.

More and more I am finding my pain is breaking through my pain meds, and yes I have tried CBD oil but it makes me drowsy so it would still stop me doing things! When my pain is this bad it is almost impossible to contemplate yoga, and housework or anything other than laying still and trying not to cry.

A couple of weeks ago I had an appointment with a pharmacist to go over my meds and see where I can change things to make the pain relief better. Unfortunately, he said I was on the maximum medications and should not be having much break through pain so if I do to take paracetamol and if that does not help to get a referral to a pain clinic!

I have been to a pain clinic before and they were not very helpful, they said there was not much they could do for me which to be honest was a blow to me. I hate pain, it is so hard to want to do anything when you are in pain all the time. In fact, it makes me want to scream and cry, though I tend to hold it inside because I hate worrying people! Right now I am also having trouble with my ears which is affecting my balance and giving me pressure migraines and both of these things along with my chronic pain make me want to curl up in a ball in bed and never leave!

Now I have had chronic depression since I was 14 years old, and I can tell when my mood is dipping, tearfulness and wanting to hibernate are my biggest tellers and the things I look out for. So right now as I am avoiding talking to my online friends and wanting to be left alone to try to cope with this extreme pain I am trying to look forward, make plans to achieve my goals.

My goal is to be where I was two years ago, back then I was doing yoga, managing to do a little housework, take a shower, walk the dog on a short walk and then rest. This is all I want, so that is where I want to see myself again so I can contribute to keep up with the house, I can look after my doggy, and keep up my exercise.

To get there I am going to see if I can speak to my Dr tomorrow about:

  • seeing someone about my migraines
  • get referred to the pain clinic
  • maybe get myself a referral so I have a specialist overseeing me regularly for my fibromyalgia like I did when my diagnosis was Multiple Sclerosis

Hopefully if these things happen I can start to get myself back to being the person I was and build up my strength, and get myself out of the depression hole I am starting to fall into!

Have you experienced this? Did you get anything out of seeing a pain clinic? What are your goals? I hope to get some advice and tips so leave me a comment.

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

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

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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