chronic fatigue syndrome
When will I ever learn?
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Hey everybody!
Well now I was going to be good, I was trying to be good but then things happened…I stopped eating well…I started trying to do a yoga challenge…and my pain flared! When will I ever learn?
It is so hard because I know what I should do, I know it and I have written about it many times so why is it that I fell off the wagon? Me and my husband were left with fatigue and pain after having a take away pizza, and our diets had run into problems we were not eating the things we knew were good for us.
Everyone has good intentions, we all try our best to eat well especially us spoonies who suffer with increased symptoms if we don’t cut certain things out and add other things. We know it and logically we do our best but then all it takes is one night out where you have a pudding and you start to crave the things that are not good for you.
What makes it worse is that eating badly makes you feel worse, and the worse you feel the less you want to stand a cook! I do have a perching stool which I actually got years ago from occupational therapy, but still if the choice is that or ordering in you know what will win and I know it will be bad!
At least the weather has changed though so we can eat more slow cooker recipes which is such a help, and I love that I can just throw everything in when I feel ok in the morning and by dinnertime it is cooked. Yes I do love stews and soups and things like that they are cheap and easy to make and really nutritious because you can throw a ton of frozen vegetables in.
Of course, my diet isn’t all that fell off the wagon… Yoga with Adriene is how I used to do yoga a year or more ago, every day pushing my body and feeling great afterwards. However, with increased pain and the instability of my joints my physiotherapist said I was only to do low impact stuff. I found Sleepy Santosha and was doing well with her spoonie friendly routines and it was keeping me supple without pushing my body too far.
I was doing well until Adriene came out with a new 14 day yoga challenge to get everyone doing yoga, and I thought it won’t be hard she said it is for anyone! I know I know…by day 4 I was in so much pain and so fatigued I ended up having painsomnia and feeling dreadful! These things together and my body was screaming for me to stop.
The moral of this story is, if you know that doing the wrong thing is going to send you into a flare, be good just be good!
Namaste xxx
When fatigue reminds me to slow down
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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
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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
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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
Fighting for contentment
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Hey everybody!
First of all I am very sorry I did not write a blog post last week, you will soon hear why so I hope you will forgive me. Big things can happen, but we can all cope with much more than we think we can and I have been fighting for contentment while going through something scary.
About a month ago I found a small lump in my armpit, I regularly check my breasts and armpits because you just never know. I was sure this was simply a cyst or something like an enlarged lymph node or something like that. I went to see my practice nurse who, after feeling it and checking my breasts herself, decided I should go to the breast clinic. So right then I went from sure it was just a cyst to worried it could be cancer or something to be worried about.
My anxiety went through the roof as you can probably imagine, thankfully my husband got the day off work to take me and we only had to wait a couple of weeks to be seen. The clinic was so well set up, I saw the consultant, had an ultrasound and both breasts checked by a mammogram in just a couple of hours! They even had beautiful lit up photography to look at while being scanned it was brilliant and I got a glimpse at how the NHS could work.
The problem of course, as most of us chronic illness warriors know, is that for the most part this is not how the NHS works! Most of the time you wait years to even be taken seriously, then you have to constantly explain and prove that you need tests or scans even when you are in so much daily pain and fatigue it is hard to even get out of bed!
I think if I went to see my rheumatologist and he saw me in a couple of weeks and everything you needed was done in one go and you got the answers right away then we would all have much more faith in our medical teams. I came home from my day being scanned, poked and prodded feeling overwhelmed with happiness that my lump was nothing sinister, and really annoyed that cancer gets this sort of treatment while every other illness is met with proving you are not faking…even when I needed my gallbladder removed it took three emergency room visits over a couple of months for me to even be referred to the right specialist!
So I am sat here feeling a little annoyed, not that cancer gets the treatment it does because it needs quick response, but that the rest of the illnesses get put to the back of the line. Since going to that clinic I have been struggling to keep my contentment and to not fall back into depression and frustration. It would be easier to give in, instead I have been turning to crystals, prayer and essential oils to try and keep my mind from being lost to the darkness.
I have struggled with depression for most of my life, but I refuse to let being shown how good medical care can be get me down. No matter what illness we are battling we deserve to be taken seriously from the start and to expect good pain relief and not to have to explain ourselves over and over again! You are just as important as the next person, and you as well as I deserve to find contentment even when we suffer with chronic illness.
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:
- 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
- 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
- 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
- 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
- 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
