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!
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.
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?
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!
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?
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.
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.
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!
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
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.
So as I sit here writing this I honestly don’t know how I feel about having two new illnesses diagnosed. On one hand it is great to have some answers and to have a plan, but on the other I wanted it to be something they could cure you know? However, I wanted to give you all a health update because I feel like you guys know so much that I need to get this out there.
So over the last few months I have seen a headache clinic, and had MRI scans, and seen two rheumatologists. On Wednesday I went to see a new physiotherapist who confirmed that the consultant thought I had a type of arthritis called Spondylitis in my upper spine and neck which is why I get so much pain and stiffness.
She also told me that I have a form of Ehlos Danlos Syndrome called hyper-mobility EDS and will need long term physiotherapy and occupational therapy in order to keep my joints working. I potentially will need a brace for my one thumb and she explained that as long as I work on improving my muscle I should see improvement in the stability of my joints.
I came home feeling overwhelmed and since then my depression has dipped a little and I don’t think it is because of the diagnosis. I mean it is a good thing to know I will be looked after long term, though not by a rheumatologist by the physiotherapist. I don’t know why it has shaken my depression up a bit, I guess it is just a lot to take in to know that I am going to have this pain and these are potentially both illnesses that can get worse.
I think for right now the thing that has upset me the most, is that I cannot do the type of yoga I love or go to yoga class anymore because it will not help my joints. I am feeling down about that, but I will still be doing yoga with Sleepy Santosha on You Tube so that is a good thing! I am determined not to let this news get to me too much so I have things planned to try and keep my spirits up, like getting my hair cut tomorrow and going to my friend’s murder mystery party next week!
So there we are, now you know why I have been a little like a hermit but I am going to be moving forward with a lot of gentle exercise, and working on improving my diet so I can be as healthy as this body allows!