Trying to live with Chronic Illness

Uncategorized

Christmas gift guide for spoonies

Photo by Thought Catalog on Unsplash

Photo by Thought Catalog on Unsplash
[IMG] Picture shows a christmas tree from above with presents around the bottom, and one side on the floor is christmas lights and you can see someone’s feet wearing red socks. Name of the blog is written above and below is the title of the post

Hey there butterflies!

It can be so hard for the disabled, or housebound people to find nice presents to buy this time of year without facing the crowds. I have decided to put together a gift guide of small online shops that I think are great for finding nice presents and I actually shop there too!

None of these are sponsored in any way but I will state if anything was sent to me for free or anything as I go ok?

Chockabilly: This site is where I got a few accessories this summer which were in a you tube video I love this site they have cute hairclips, pins and handbags as well as real vintage and reproduction clothing. If you have a vintage gal in your life you will want to check out what they have!

Earthlight Crystals: This shop has a wonderful site with beautiful candle holders, crystals and homemade candles. They are on Etsy as well and both shops have some beautiful and unique pieces that would really make somebody’s christmas!

Urban Lune: This site is a gem, their candles are so unique and smell divine I cannot wait to give them out to my family this christmas! They also sell crystals, witchy essentials and tarot cards so you will certainly find something for everyone.

Cocoa and Heart: I was sent one of their gift boxes to review and you can see this video below, their chocolate is so delicious and I am definitely going to be getting some boxes for family! If you want to buy from them you can use the code XMAS18 for 10% off your order until January 31st 2019!

Grizzly Supplies: This shop is amazing it is all hand made real wood shelving for ornaments and especially crystals. I have had one for one of my christmas presents from my husband and omg I cannot wait to have it up and adorned with my favourite pieces! They have so many designs available you will be sure to find something special for someone special.

Pretty Old Jewels Co: If you are looking for one of a kind, vintage jewellery this is the place to go! They have so much choice and all hand picked so you or your loved ones can look fabulous at christmas!

Unbroken Smile: They do apparel for anyone wanting to support or raise awareness for chronic illness I love their designs and how inclusive they are. I always wanted something from there so if you are wondering go look I am sure you will find something wonderful.

Art tales and Magic: The art in this shop is dark and full of magic and fantasy I love the owners who are fellow you tubers and his art speaks for itself!

Mighty Moon: Last but not least, this shop has some beautiful and unique pieces that are all hand made and the girl who runs it is so lovely to chat to I would definitely recommend!

So there you have it, my favourite unique shops online to buy original designs that will leave you wondering what to give as a gift and what to keep for yourself! I hope you enjoyed this gift guide and will let me know if you buy any presents from these shops

Namaste xxx

Looking back as I look forward

Blooming Mindfulness

Photo by Marina Khrapova on Unsplash
[IMG Picture shows the name of the blog in orange above a picture of a woman looking out of an open window and below that is the title of the blog]

Hey everybody!

First of all I owe you an apology last week was a bit crazy and instead of pushing out a not so good post I thought I would look after myself and have a week off. However, here you are so maybe I should explain that I have been going through a lot of self-discovery recently and because of this I find myself looking back as I look forward.

Last Friday was so exciting I went to the Mind Body and Spirit festival which was held at the NEC in Birmingham. It is not too far from me and I was lucky enough that one of my friends Josh and his Mom fancied having a day out there too. I  used my wheelchair and Josh was kind enough to push me, there was a lot of walking at the event so I couldn’t have done it!

It was also a very overwhelming event, there were of course a lot of crystals there but also everyone was open and the energy really affected me and Josh. Not in a bad way we could just feel a lot even with grounding and protecting before the event which I dread to think how it would have been if we hadn’t! The day went by so fast and to be honest I did not buy much or look closely at much because I felt overwhelmed by it all. That said it was a wonderful day out with one of my close friends and I would go again now I know what to expect.

It has taken me a couple of days to recover of course, but that was good, it gave me time to think and to come to terms with something I only found out last week! I went to see my GP to see if there was a plan after being diagnosed with ankylosing spondylitis and Ehlers Danlos syndrome (EDS) in April.

My doctor looked at my records and found the letter from the specialist and that was when she told me that I have always had EDS and in fact it is the fact that I have been overstretching and misusing my joints for so long it is actually the EDS that triggered my Fibromyalgia. I did a You Tube video about how this made me feel and where my head has been at since I got this information:

I think I needed a little time to understand what this news meant and how I was going to process it, I mean it makes sense but still the EDS is such a new diagnosis I wasn’t sure how to take it. Now I cannot help but be thankful for good friends who stand by me and my wonderful husband who is always there for me no matter what, I am so so lucky!!

Moving forward my attention is going to the EDS, on protecting my joints and looking after myself I will be working closely with my physiotherapist to get my body stronger and hopefully by using my joints correctly and doing gentle daily exercise. I do most of that using You Tube and if you ever wonder what sort of things I do it depends on how I am feeling on the day but it is always something from this playlist.

I have also learned how to subtitle my videos and it means creating a video takes much longer but it is so worth it when I now know it is as accessible as I can make them. I will hopefully be working slowly through my older videos to get them subtitles but if anyone would be up for helping please just email me for information as to how I need all the help I can get!

Namaste xxx

Resting leads to guilt

Picture shows a woman in bed all you can see is her head and duvet above this is written the name of the blog and below the title of the post

Photo by Gregory Pappas on Unsplash

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

Looking back some diagnosis just make sense

Picture shows the name of the blog with a photo of a girl sitting on the bed with her head resting on her arms and a mug in her hand written underneath is the title of the post

Photo by Asdrubal luna on Unsplash

Hey everybody!

So if you have been reading my blog for a while, you will know that I was diagnosed with two illnesses Ehlers Danlos Syndrome (EDS) and ankylosing spondylitis. Looking back some diagnosis just make sense and for me that is EDS, when I started to research it all just seemed to fall into place.

See back when I was a kid I had a lot of problems with my legs, they were constantly painful and the one time I saw a doctor I was told it was just ‘growing pains’. However, the fact that I was late at walking, and that my legs were so stiff that I couldn’t straighten them when sitting surely someone should have put the pieces together?

Thing is that though it answers some of the questions I have had my whole life it doesn’t change the fact that I live in the now. I am trying so hard to live in the now and to bring more mindfulness into my life, looking backwards just brings negative thinking and depression. I have to try and hold myself back from that and try to work with what I have.

Right now I am doing all I can to keep my body as healthy as it can possibly be and to do that I have listened to my physiotherapist. Now I love my mother, but she never does her exercises, me on the other hand I try to fit them in as often as I can because I am determined to keep on my feet and as mobile and as well as I can for as long as I can.

Now I am quite lucky because I have always done done form of exercise, though it is frustrating that my body is unable to keep working at the pace I wish it would. I miss doing Yoga with Adriene routines, I liked having goals of particular poses I wanted to work towards however last year it became easy to see that I had to step back. I was having my joints dislocate and having a lot of neck pain which was only made worse by doing the plough!

After talking to my yoga teacher I dropped out of yoga class which was such a hard decision because it got me out of the house and gave me some social time that I very much longed for. Thankfully soon after I discovered Sleepy Santosha and I have been keeping on top of my body’s flexability and maintaining a level of fitness that I am thankful for and so is my physio! Right now that and my physiotherapy exercises is more than enough for me and if I try to do much more now I find the small amount of housework I can manage is totally out of my reach!

I do think reflecting back on things is important and there are times when it is very much needed in life, but I also believe that living in the now is all we really can do. It is hard to admit that I could have looked after my body better if I had known what I was suffering with back then, but I am proud of where I am in life now and the person I have become…surely that is more important?

Namaste xxx

 

Efforts To Help Soothe Your Emotional Wounds Following A Death

Death is something that will touch each and every one of our lives. It pays to develop a healthy relationship to this sad occurrence before it happens, but also give yourself the space necessary to grieve and feel what you need to feel appropriate. When someone dies, it can be hard to force yourself into action. Often, many of us want to retreat to our families. But, in order to show respect to the person we’ve lost, and to try to seek closure on the affair, it’s best for us to respond to tasks, and to be useful despite the sad feelings in our heart.

 

The main efforts to help soothe your emotional wounds following a death are difficult to enact, but with the right people around you and the willingness to act in an admirable manner, you can do amazing things:

The Funeral

It can be quite stressful to begin thinking about the funeral the moment a relative or friend dies, but unfortunately the longer you leave it, the longer you will wait before that person is laid to rest. Follow their final will and testament to the T. You can achieve this with the help of local funeral directors and estate managers. Planning the funeral respectfully can happen through this lens. Not many people are experts in funeral planning unless they have been through the process previously, so it’s important to ask questions, to check your options, and to ask for help.

There’s no reason to do this all yourself. This task can help you and your family begin to come together instead of withdrawing from the social bond temporarily. If your relative hasn’t stipulated how they would like to be treated after death, consider putting it to a vote for the person’s nearest and dearest, burial or cremation. Sometimes, the choice is obvious due to religious beliefs etc. If you follow how you believe the person would have wanted proceedings to happen, and you express utmost respect, you are doing a good job.

Celebrating

This is not an easy time for celebrations. But you should find a way to. While the death is tragic and the loss will be felt on a profound level, taking the time to remember the good about a person can help you feel comforted, and that will pay loving respect to their memory. Sharing beautiful experiences you shared with that person with the family, or perhaps talking about silly moments you shared together, or moments you both smiled together can help everyone feel a small moment of levity. It can be hard to consider at the time, but someone dying in no way reduces the positive impact they had on the world, even if that impact was in small, humble but sincere ways.

Taking the good allows you to begin rememberance proceedings, and begin to seek closure after time. With the promise to never forget the memory of this relative, you can begin to seek your healing process with the family together, being there for one another, and slowly coming back to your own lives.

Following death, emotions can feel chaotic. With these two simple activities, you can begin to seek closure.

Namaste xxx

contributed post

 

When fatigue reminds me to slow down

Picture shows the title of the blog above a picture in black and white of a woman in bed with the title of the post written below

Photo by Kinga Cichewicz on Unsplash

Hey everybody

There really are times when the universe teaches us lessons in unexpected ways, like when fatigue reminds me to slow down. For my whole life I have been focused on achieving my dreams and I always have lists and goals of things I want to do every day. I use an app called Planner Pro it is on my iPad and every day I list about 4-5 things I want to get done that day.

I always have my time with God which is when I meditate and pray and I always do some form of yoga and my physiotherapy exercises. On top of that I try to do a little housework and then some work online if I have enough energy and my body allows me!

And there is the problem, my body never lets me and for a while I have been pressuring myself to get everything done by a certain time. It is like I want to prove to myself that I can still be of use to society and it is really stupid when I hear it in my head now as I write this! The problem is society judges everyone by the job they do!

This recently came to the front of things when Geoffrey Owens, who was a star of The Cosby Show, was photographed bagging groceries in a supermarket. Pictures were published of him with the hope of shaming him, which they did for a little while. But then people started talking about how someone working to help their family is a good thing and he even said that whatever job a person has shouldn’t matter because every job has it’s worth and he is right…but what if you are too sick to work?

I don’t know, it kind of feels like we fall through the gaps of society and that really does not sit right with me. I was pressuring myself to be included and to be taken seriously, I mean I always wanted to be a housewife and have a child but I am not a mother and most days I cannot manage to do housework so what am I? Do I matter? These are the worries that kept me pushing myself to get all my jobs done by 5pm and not resting enough.

So the last few days my pain and fatigue have been through the roof and resting, and I have had to slow down but the thing is slowing down aligns much more with my beliefs than trying to fit in with society. I love yoga, mindfulness and taking time to appreciate the moment and what my body and soul needs. So strangely, this fatigue flare has made me slow down and take a breath and change the way I think, when I realised I was doing things wrong I was so thankful to the universe for showing me my mistakes. I needed that reminder, have you ever had something like this happen?

Namaste xxx

 

Fatigue and Netflix addiction

Picture shows the name of the blog above a picture of a woman holding a romote control and eating from a bowl of popcorn with the title of the blog post below

Photo by JESHOOTS.COM on Unsplash

Hey everybody,

How are you all this week? I do hope that the change in weather is not affecting you all too much? I wish I could say the same, but my fatigue has flared and because of it I have become addicted to the TV show Gilmore Girls which I didn’t watch the first time and must be mad because it is wonderful!

You know it is kinda strange but fatigue is something that I have had for so long I have my ways to battle it and work around it. I have patterns and routines that I have developed over time so that I can usually keep up with life in my own way around the fatigue. However, this last week it flared and I spent many days sleeping in and getting out of bed after 4pm.

This had left me feeling lost and well frankly bored! I sometimes think that when there is a full wishlist of things ready to watch it can be almost impossible to choose something. I think I must have started and stopped a few different shows and movies before changing my mind. So when Netflix, who knows me better than my own mother, suggested Gilmore Girls I thought hey why not?

Now I am a huge fan of 1990’s TV shows so once I started watching I became addicted, it really helped me to not get depressed. Usually when I have times like this, I lay there feeling awful because I cannot keep up on my housework and I start feeling like a failure. But, with this whole new show and all the episodes to watch I didn’t have those thoughts at all.

I guess what I am saying is, it is sometimes the strangest things that can get us through the tough times that chronic illness serves us from time to time. So here I am already on season 5 and loving the music and the fashion and feeling very sentimental, TV shows were just so much more fluffy and light then you know? I mean I do love the influx of Sci-fi and horror shows that seem to be constantly on TV now, but when I am feeling more fatigue than usual I really want something that will give me the warm and fuzzies and I definitely recommend Gilmore Girls.

So what TV shows do you watch when fatigue hits and you need the fuzzies?

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

Photo by Yuris Alhumaydy on Unsplash

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

Pushing passed anxiety

Photo by Alexander Lam on Unsplash

Hey everybody!

So lets talk about pushing passed anxiety to make your dreams happen and move forward in life. It is something I have been needing to do I have things I want to achieve in life and my anxiety always holds me back and this time I did not let it win!

So I am also a You Tuber and a few weeks ago I messaged one of my favourite You Tubers, Miss Mary Lu and asked her if she wanted to do a video together. I was so excited when she said yes because she is such a wicked cool person and she is someone I look up to because she has more subscribers than me.

However, as the time to upload came up I got scared, I started to doubt myself because my channel is slow growing, I am shy in person and I am not great at promoting myself. So I started to feel like I would look stupid or nobody would want to watch because my editing and lighting etc is not great and yeah it got me doubting myself so much.

BUT!!! Yes there is a but, because I took my time and I kept thinking about it being such a great opportunity and I would regret it if I backed out because of my anxiety. Today the video I posted went live HERE and I am so proud that I pushed through and I have already learned so much from this collaboration and I know that the more I push myself through then the more I will achieve.

My anxiety almost keeps me captive in life and I cannot stand that! I want to be a good blogger, and I want to do well on you tube and help people understand chronic illness and that we are just people living our lives and trying our best just like everyone. So this was a big week and it was hard for me, I realised how much I need to learn and grow and at first it got me down but then I realised that I have only been editing 8 months, I need to be patient with myself and kind to myself.

Now the video is out I am so proud of myself I love what me and Mary produced together and I hope it encourages everyone to go and try new things, and to take care of themselves. Self care is so important it helps both our physical and mental health so let me know down below is anxiety holding you back? And, what is your favourite self care?

Namaste xxx

What does life after illness look like?

Source

 

For a lot of people, the moment that they discover the news that they have some kind of long-term or chronic illness, it can often feel as though the whole world is crashing down around them. It can make a lot of things feel pointless and as though there’s no real purpose in moving forward at all. Of course, that’s obviously not the case. Long-term illness is far from a death sentence and many people go on to live incredibly happy and fulfilling lives after being diagnosed. However, that doesn’t mean that there aren’t adjustments to your life that need to be made. With that in mind, here are some things to think about in a life after illness.

 

The boring stuff

 

One thing that you’ll want to get out of the way as soon as possible is all of the boring legal stuff and other paperwork that you inevitably have to deal with. Whether you’re filing an insurance claim or going through a company like The Specter Partnership to get compensation if you’ve been a victim of malpractice, it can be tough to motivate yourself to deal with any of it. However, doing it as soon as possible means that you can get on with your life without having to have those things constantly hanging over your head while you’re trying to adjust.

 

Moving forward

 

For a lot of people, when they get back to their normal life they’re faced with one question: now what? It’s okay to feel a little lost, at least at first. After all, you’re dealing with a big change and it’s understandable that you might expect the rest of your life to reflect that. But the truth is that life goes on no matter what and it’s up to you to try and go on with it. Think about the changes that will be needed in your life but also focus on the things that are staying the same. Before you know it, you’ll feel like things are right back to feeling the way they used to.

 

Asking for help

 

No matter kind of situation they find themselves in, there are some people who simply cannot stand the idea of reaching out to anyone in their lives for help. However, doing this is actually one of the bravest things that you can do. There is no weakness in needing help from others and if you refuse to ask for it, you’re just going to end up making your own life a lot harder than it needs to be.

 

It’s incredibly important to understand that there will almost certainly be days where you just want to hide away and give up. It’s okay that this happens, it’s a natural part of dealing with something as difficult as a long-term illness. The key is to keep your eye focused on the present moment and living every second as well as possible. It’s okay to get knocked down from time to time, as long as you keep getting up again.

Namaste xxx

contributed post

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

Social Media
Find me at:

Chronic Illness Bloggers

Fibro Blogger Directory
Bloglovin
Follow
Subscribe
Get new posts by email:
Site Info
Site Name: Blooming Mindfulness
Online Since: July 2016
Webmistress: Beverley
Contact Us: email
Online:
Layout Info: Version 1
Designed By: Beverley
Leave a tip