Trying to live with Chronic Illness

chronic headaches

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Resting leads to guilt

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Hey everybody!

Well I have been put on antibiotics this week, hence no post on Monday just gone, and I feel awful on them! I am literally sleeping most of the time and to be honest resting leads to guilt, and I have written about this before but the struggle is real!

My husband is not feeling too well right now either so I want to be looking after him, instead I am staying in bed all morning, needing baths to help my pain, and not managing to do my physiotherapy or yoga or any housework! I am literally a lump on the sofa and it is not a nice feeling at all!

Now I try my best to be positive, I make sure I have my God time every morning, I meditate and I practice mindfulness to try and help my chronic illnesses. However, there are times especially when I am struggling with my pain and fatigue, when I cannot control my thoughts and things can turn negative. This is when I need to dig deep and try to use all the tools in my toolbelt to try and keep my vibration and spirits up.

Now I don’t know about you, but I have a few things that help me and hopefully they can help you sometimes and I would love it if you would hop into the comments and share some of yours:

  1. Meditation: This is a big one for me, I use the Insight timer on my iPad to find guided meditations focused on self love, raising my vibrations and opening to the Solar Plexus Chakra which is connected to personal identity, self will and how much confidence you have. The Solar Plexus is very much related to energy levels, problems with digestion and metabolism so I am working very hard to connect and open this chakra up at the moment.
  2. Alternative Therapies: There are a wide range of crystals that can help with energy levels, I recently bought a Bloodstone and I am working with this just holding it and meditating with it to see if it helps. There are a lot of things like essentials oils and crystals that have been used for thousands of years as medicine and I think it is important to investigate and try things to see what works.
  3. Diet: No I am not talking about losing weight, but just paying attention to what you eat when you have chronic illnesses. There are so many diets recommended for different illnesses and it is important to check out bloggers who are living with those illnesses to find recommendations that actually work. I am trying to stay away from fatty and processed foods and to get back to making things from scratch.
  4. Listen to your body: The main thing I would say is to be in the moment and listen to your body, it will generally tell you when it needs to rest or eat or when there is pain and it is when we ignore these signals when a flare comes!
  5. Take a bath: I use some lovely Magnesium salts and a bath bomb, magnesium salts can help pain and resting in warm water if possible for you can really help with aching muscles as well as nerve pain. I sometimes bathe in the evening then go to bed and oh my goodness do I get a good sleep!
  6. Heating Pad: these are a staple of any chronic illness warrior honestly a heating pad can make all the difference, I use mine a lot in the evening for my back pain and they are a must if you are dealing with long term pain.

Now I am currently watching one of my favourite podcasts on you tube and typing this out, but I cannot stop yawning and honestly I just want to be in bed! However, if I had not done this post I would have felt like I had achieved nothing today and that is such a difficult emotion to deal with. The best advice I can give is to remember that as a chronic illness warrior, we are dealing with so much just to keep going and because of this it is so hard to deal with societies expectations anyway so we need to give ourselves a break. I hadn’t really realised I was feeling guilty until today and I know I have dealt with this before, so I know I need to just let that go and try to remember my worth is more than what I do.

I hope you will post the things that help you down below in the comments and I am hopeful that my experiences this week can help you.

Namaste xxx

When pain gets in the way

Picture is the name of the blog at the top, below that is a picture of a woman lying in bed with her hair messy and her arm covering her face. Below that is the title of the post

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Hey everybody!

Sometimes chronic pain can get to a point where it is getting in the way of the life you want to live. I have dreams and things I want to achieve, but it is starting to feel as if my pain and fatigue are getting in the way.

I have a video I am putting up on my You Tube channel that kind of hits on this point, but basically it is that my spine pain gets so bad by early evening that I want to just go to bed and lie flat. I cannot think straight and to be honest I just feel like rubbish! Remembering the things I need to remember for my psychic course is becoming so difficult and I guess I am worried my illnesses are going to hold me back?

I guess I could be being silly, but it does feel a lot like I am letting myself down does that make sense? I mean should I be pushing through the pain and fatigue? I try my best to so that I can do a little housework and my physio exercises I mean it isn’t as if I get to do much already because of my fatigue and pain you know?

On top of that I still have not been able to see my doctor after getting two new diagnosis! It is frustrating to not be able to see the people who are meant to take care of me you know? I really need my medications reviewing because I have not had them looked at for a while but whenever we call to make an appointment I am either told there are none or given one with the nurse. I was a nurse so I know that she cannot make decisions like changing medications for long term conditions so I want to see my doctor!

Then two weeks ago I was given an appointment at the doctors in our village, it is like five minutes from us and everyone was nice and the doctor was so lovely and helpful and seemed knowledgeable. So now me and Lee are wondering if we should change to that doctor surgery so I can get some better care. After all, my current doctor did say Fibromyalgia was just a ‘dumping diagnosis’ they give when they don’t know what is wrong.

I hope this post makes some sense, and maybe if you can read passed my brain fog and pain addled brain then you could leave me some ideas of how to keep my body going when I am in pain and want to be in bed, thank you.

Namaste xxx

Frustration and studying with chronic illness

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Hey everybody!

If you have been following my you tube channel, then you will know that I am currently studying to become a psychic. I have found as the course has progressed however that my chronic illnesses are holding me back and it is so frustrating!

My chronic illnesses are Fibromyalgia, Chronic Fatigue Syndrome, Ehlers Danlos Syndrome, Spondylosis, depression and generalised anxiety disorder. They work together to make my life interesting by not only affecting how mobile I am, but also making my memory bad, giving me fatigue, shaking, numbness…the list goes on.

I have suffered with many of these my whole life but they started to change things mainly when it came to studying. So I could never get good grades in my schoolwork and I struggled in my nursing course because a bad memory means that retaining what I am being taught can be extremely difficult.

Over time when I gave up work and stopped needing to remember facts and figures it didn’t bother me as much. However, I am extremely interested in learning how to be a psychic, I am starting to get into crystals and I am even learning about the moon phases and I am finding that nothing is sticking and it is so frustrating! On top of that I have the bonus gift that studying makes my fatigue worse so I am so so tired all the time. The extra fatigue makes it hard to balance resting with studying and my housework that I try to do a little every day but it doesn’t always work out now.

I also have problems with grounding, this is a meditation practice that protects you and you are supposed to do it every morning and every night. However, on my left side my numbness is worse, so I cannot feel the ground below me and my pendulum will not work on that side. These might not seem like big problems but they are, right now I am looking into how crystals and essential oils can help but while I look into that I find I am frustrated and struggling.

I am hopeful that as I progress it will help my illnesses, but until then have you been a student? How do you cope with the side effects that come with studying and having illnesses that will not stop? Any tips or tricks gratefully accepted.

Namaste xxx

Body Positivity and Disability

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Hey everybody!

The summer is here and I am wearing a lovely skirt and a pretty vest top and I should be feeling happy but I am feeling self conscious. I suffered with eating disorders, I look in the mirror and I only see my flabby arms and my tummy that is thin but not at all toned and it makes me feel so deflated. I used to be extremely thin and toned and now my illnesses have worsened and I am struggling to feel any body positivity with my disability!

I see all the adverts with the models with perfect bodies, I watch the you tubers working out in Hollywood; and I feel that pressure on me to eat everything with avocados and to work out in the gym every day! However, I have new diagnoses that mean my neck needs to be protected more and my joined are more prone to dislocation so yoga the way I used to do it has been taken off the table.

Honestly, since I was told this I have found my fitness level has seriously worsened and my body is not as toned and really my pain and fatigue have worsened! To me doing daily yoga is important but I feel a little lost as to how to practice and how to increase my fitness without doing harm.

Now obviously people are probably going to chime in with ‘get a fitness trainer’ however the fact that I can rarely leave the house and the cost that is really not an option. I am kind of left with the option of you tube which is what I have been using but I feel like I am starting all over again and the motivation when my fatigue levels are where they are now and with my pain is so hard to find! I would love to just go for a simple walk, but the weather is hot here right now and I keep having dizzy spells so that is not much of an option for me to do I wouldn’t want to have a fall out on my own!

So am I left looking in the mirror feeling like my outside doesn’t match my inside? That I am doomed to not being able to feel healthy and sexy because I have chronic illnesses? Do you guys think this is what I should just accept or is there another way that I have yet to see or hear about? I would love some input so please leave me a comment, drop me an email, or hit me up on instagram honestly I need some help not feeling like Buddha every time I look at my tummy!

Namaste xxx

PS. I have been nominated in the WEGO Health Awards for my you tube channel and would love it if you would please click below and consider endorsing me thank you x

 

 

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

Is meditation and chanting changing my brain?

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Hey everybody!

Well I am starting to feel more like myself and less like someone who just wants to curl up in a ball and do nothing and speak to nobody.

As I have spoken about many times before on here and my You Tube Channel, I suffer a lot with my mental health, namely chronic depression and generalised anxiety disorder. Both of these illnesses conspire against me to keep me inside and lonely and not doing the things I love to do.

However, over the last couple of months, me and my husband have been working hard to learn more about other cultures and other ways of thinking. Here in the West it all feels very overwhelming, there is a lack of kindness and compassion, and people tend to work work work without taking the time to look after themselves properly. Both me and especially Lee had fallen into that trap and we had enough!

Lee started learning about The Secret, and I found out about The Power of I Am and looking more into other religions that are as old as Buddhism which I have been studying for a while now. The realisation that if I put in the work I could be in control of my thoughts and take some control back became something that I greatly wanted to make happen.

After finding a course on the Insight Timer App, I started to learn about Bhakti Yoga, which is a spiritual practice within Hinduism, that concentrates on devotion and love for any endeavour. I found this so beautiful, and started to take mindfulness, gratitude and meditation more seriously. I also discovered chanting could help me stay in the moment and provide short mantras such as I am safe I am protected, which definitely calm my anxiety! As soon as I changed my thinking from what I want and what other people do to gratitude for what I have my whole demeanour changed! I woke up happy, something that has not happened since I was about 14years old! I started to be thankful for the home I live in and to see what I already had instead of focusing on what I wanted to change.

I also found that old emotions and feelings came up that I had stifled years ago, but by chanting or praying through it I found that I coped much better with them. It became so interesting to me that just changing my way of thinking could change things so quickly, I wondered if there was any scientific basis to think that my brain had changed. I found that there were articles about this, but many were not scientifically based which annoyed me because I am experiencing the change surely it can be measured somehow?

I did find this one study on sciencedirect.com which basically confirms what I am feeling and seeing myself, unfortunately the study was only done on small groups. However, it did help me feel like this could be a long term change and not just something that will last a couple of months and then stop working…I mean people have been using these tools for hundreds of years they must have an idea it works right?

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

 

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Hello

Hi there I am Beverley, I am trying to find a way to live with Fibromyalgia, Chronic Fatigue, Ehlers Danlos Syndrome, ankylosing 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 I am learning to be a psychic and I am on a spiritual journey I am excited to share with you. I look forward to getting to know you better, I will be updating Mondays and Fridays xx

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