fibromyalgia
Looking back as I look forward
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[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]
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
When a pain flare is overwhelming
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Hey everybody!
My pain is flaring at the moment and I will be honest it is kind of worrying and overwhelming! I am trying to keep my chin up and keep going, I think sometimes pain and fatigue can stop us in our tracks then we find our ways of coping; So when we flare it can be difficult to find our feet again
because we are already running at a much lower pace than most people could cope with!
What is a flare?
A flare is when your symptoms get worse but it is because of something you know and you are sure it will get better, for example after going out for the day or seasonal weather changes.
“A flare is a transient worsening in severity of a disease or condition that eventually subsides or lessens. For example, in many arthritis conditions the joints can flare with worsening of stiffness, pain, and swelling” – medicinenet.com
How do I cope?
I would usually go to see my General Practitioner, but to be honest she is not very compassionate and I do not think she feels Fibromyalgia is a real illness. She also has said many times she cannot give me anything else for pain and to try paracetamol, I did have a little hope when I was referred to a pain clinic…until they wrote refusing to see me because there was nothing they could do!
So the question I ask myself at times like this is how am I going to cope? I know I cannot turn to my doctor and though I am under a long term physiotherapist, I do not have anyone overseeing my whole condition who is a hospital team or anything like that. I think that is why it feels overwhelming because I have nobody to call and ask for help, but if you have been reading my blog posts for a while, you will know I am always looking to be as positive as I can.
Here is the things that are getting me through this flare:
CBD Balm – This stuff is brilliant for putting on the exact area of pain, and right now I am using it a lot on the back of my neck where my spine is very painful.
Heating Pad – Every chronic illness warrior knows that if you have a good heating pad you can use it to help pain so much. You can pick them up quite cheaply and they are brilliant especially for nerve pain which I am using one for right now!
Crystals – These days I can often be found with a crystal on my person and if I am in pain I will hold one against the area that hurts. Different crystals work for different conditions so check out that link for more information.
CBD oil – I have used this before but was priced out of using it for a while, however now my pain has flared I have turned back to it and I take it just at night to reduce my pain and to help my sleep. I also use the crystal Howlite at night to help me sleep and its soothing to hold so I would recommend that.
I would love to hear what helps you at times like this and also I do hope this helps you a little even if it is knowing you aren’t alone while the seasons change.
Namaste xxx
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:
- 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.
- 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.
- 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.
- 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!
- 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!
- 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
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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
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
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
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
