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.
Isn’t it funny how sometimes you take a little break and it totally refreshes you? I have had a daily relationship with God all my life, I have always tried to understand Him and where I stand and for the most part that has been done through prayer. However, after discovering Buddhism a few years ago I have also been using meditation and mindfulness…hence the name of this blog!
However, recently I have been questioning my choices when it comes to my faith and how I communicate with God. I have always believed that there is one God and all the many religions are just human’s ways of trying to understand and to find a way to show our love for them. So to me it doesn’t matter how you worship its where your heart is when you do it that matters and how you live your life.
That is my own personal view on things and though I mainly lean towards the Christian and Buddhist religions I have often questioned things and this has been happening a lot recently. If you read my blog regularly you will know I have been trying to find better ways to treat my illnesses and some of them might be controversial but life is short and I want to try everything that I can.
Now questioning, looking at things like health and religion is in my opinion very normal and human things to do, especially as if you do a quick google search on either of these things you will find millions of websites claiming to have all the answers and they all contradict one another!
So I got a little lost and I decided to take a couple of days off from researching my health, meditating and praying just to be able to step back and see the whole picture. After those days I came back to my faith with renewed sense of being on the right path and that I am going to be heading towards happiness and contentment which is after all what we all long for right? I now have a good sense of the universe and of my place in it and I have come to understand the real meaning of mind, body, spirit and how the yoga I have been practising along with meditation and prayer, and looking at nutrition can really give me the answers.
So though I have been doing the same things for a long time, I have seen them as seperate entities but by focusing on God and taking real care of myself I think I might just start to find myself moving from depression to contentment. I understand talking about faith and the universe and God might make people want to run away screaming, but I started this blog wanting to tie faith and health together, hence the title, and I lost my way a little bit.
So I am here with renewed inspiration and I am excited for the future I hope you will enjoy the journey with me and that I can help inspire you or give you ideas that will help you on your journey!
So first of all I want to apologise for not updating my blog for a week or so, unfortunately I needed a little time to look after my mental health after losing my Grandmother. She was a big part of my life, in fact I think I talked about her in my last post and I am finding the grief hard.I have taken losing her and my Grandad pretty badly because they were two people who taught me so much and loved me so completely and without conditions.
It is horrible because I have moments where I forget they are gone and I get a idea to call or suggest we visit, but then I remember…
I think anyone who is dealing with grief knows that feeling, like hearing it all over again, and right now it is hard because the funeral isn’t until the end of the month so that is looming over me. Added onto that I have my birthday this week, I am turning 40 and most people I wanted to celebrate with me cannot make it and I think I just have a lot of feelings from childhood parties gone wrong kicking up again!
I think a lot of people who suffer with anxiety and depression know this well, something happens and instead of just wanting to deal with that one thing your brain decides to think of a million other times in your past. Negative thoughts and memories are something I deal with every day and something that I honestly fight with and battle with constantly. Most people who met me would not think that, but even as I smile inside there is a million thoughts and feelings fighting to take that smile away from me. I am in the process of starting therapy again, finally after a life with Generalised Anxiety Disorder and Depression since the age of 14 the doctor thought I might need long term therapy wow never would have thought it!!
Opening up to someone new about your past and the issues you have leaves you feeling so exposed and raw, so losing one of my close family at the same time has been very hard. I think it is hard at any time, but talking about it along with retelling my past has left me feeling very small and lost at times.
I really hope however, that I can push through this time in a healthy way and this is how I am going to try and do that:
- Talking – I think it is important to be open and honest about my thoughts and feelings at the moment and I am talking things through with my husband and therapist because I cannot hold this all in.
- Meditation – I try to meditate every day to protect myself and to keep my mind clear, it gives me a chance to slow down and just concentrate on my breathing. I also found some amazing guided meditations for grief on You Tube.
- Mindfulness – Staying in this moment and not getting lost in emotions and thoughts is something that does not come easily, however I find it helps my anxiety, which is thinking about the future, and depression, which is thinking about the past. I have been working on this because I am a Buddhist, but it is also a big part of what my therapists have suggested.
- Keeping busy – Now this one can be difficult with pain and fatigue, both of which are worse because of the grief, but it is important to at least be reading or watching a TV show sitting and thinking is the worst thing for someone suffering with their mental health so definitely bear that in mind.
I hope this post has not bought you down or upset anyone, but I think far too much in our society we are afraid of death and talking about mental health issues and right now that is what is happening in my life. Yes it is difficult, but the more we talk about it the less stigma there will be and more people will be able to get the help they need without worry or fear. Next Monday I will tell you all about my wonderful birthday celebrations and hopefully I will cope with turning 40 without running away hehe
So right now I am struggling with the fact that my Nan is nearing the end of her life, she has been one of the biggest influences on my life. I have been lucky enough to have her in my life for so long and I am thankful for that, however grief is creeping in and I am aware that I do not want to fall into the same depression that I did when we lost my Grandad.
So this time I am concentrating on the good, I am thinking through every good memory I have of times with her and remembering how thankful I am that she was chosen to be a part of my life. She taught me about God and how to have faith, she was always there to listen and she never put me down or made fun of my struggles over the years like others did.
My Nan is amazing and I am determined to follow her example and to hold onto God as I go through this journey with her. She always taught me that if you have your faith you have everything you need, and that is so true. My prayer times have been so sacred to me and have helped me so much to get out my feelings as well as to send love and care to her.
I have also been holding onto the Heal Chronic Fatigue course teachings and remembering to turn each negative thought into something good. Buddhism teaches that we should not try to hold onto people or things because they are not going to always be there. I have been using positive affirmations, good memories and positive thoughts to make sure I stay as positive as possible right now.
However, self care is not just about staying postive and being happy, I let my tears fall when they need to but the difference is I do not wallow in it. I let my emotions flow now I do not judge them like I used to and I am being patient with myself as my mind is very scattered right now because I am trying to wrap my head around losing my beloved Nan. Grief can be overwhelming at times, but it is important to treat yourself well, make sure you eat well and often and give in to comfort food sometimes because it is called that for a reason!
Have you been through grief? How did you cope and what things did you learn from that time?
First of all, the neural blocks I spoke about last post are working, my head is a lot nicer without pain, I will do a full review of how I am doing in a week or so to give them a chance.
So, on Wednesday I am off to London to stay with my best friend for two nights and on Thursday we are going to see Hamilton! I love this play so much I definitely got caught up in the amazingness of it and I cannot wait to see it now it is in London as well!
I am not going to be there long, I am going to chill with my best friend she has Chronic Fatigue and Fibromyalgia as well so we rest a lot. We have a lot of similar interests so we are looking forward to spending time together and just having a nice time.
I get there by using the disabled help offered by National rail where you book assistance in advance when you book your ticket. My husband will take me to the station and there we will book in and someone will provide a ramp onto the train and there will be a disabled space for me. I will then get help off the train in London and Louise and her parents will meet me off the train, it is a good system and it works well so long as the station is manned that you are using.
I have done this before and not had problems so I know it will be fine I will take a book and be lost reading and not notice the time pass at all. I quite like the time on the train, it is scary and something I rarely do, but it feels nice to be out alone like I used to be before I got sick and for a little while I can pretend I am not sitting in a wheelchair and I am just going away for a couple of days.
Right now however my mind is buzzing with worries and fears as my generalised anxiety disorder kicks up a fuss and tries to dampen my excitement. I have had my outfits planned out in my head for weeks, and I keep worrying they will look silly or be wrong for the weather or a million other worries that have no basis in reality because I know my outfits are super cute and I will feel so good wearing them. Then there are worries about what to pack, do I need to take 10 pairs of pants? Do I really need extra socks just in case? Which pyjamas will be best…..the list goes on!
So when my brain is working on overdrive how do I stop the worries and get back to being excited?
- Breathe: Yes it might seem simple, but pausing to take deep, slow breaths can slow my mind and help me get back to feeling like I did after my morning meditation.
- Organise: To keep my anxiety down I tend to plan everything in advance, if I know what to pack and when and what baggage I am taking etc it can really help me to stop worrying so much.
- Pray: I stay close to the bible every day, and all through are examples of things working out if people simply take their worries to God and have faith that it will be sorted by God. I find this so comforting to know and I hold onto it with both hands.
- Mindfulness: This is a big part of the Buddhist faith and something that really helps me when my anxiety is pressing in on me. If I take a breath and concentrate on what I can see and hear in that moment it clears the negative and worrying thoughts from my head. In this moment everything is fine and I am safe so why worry?
- Trust: I have stayed with Louise and her family many times, they have always looked after me, spoilt me and made every visit special. They would never let anything happen to me and knowing I can trust them fully goes a long way to easing any crazy scenarios that my brain can come up with!
So after holding those five things close to me, I am managing to keep my anxiety to a minimum and my excitement to see my best friend and to finally see Hamilton on stage high. I will hopefully be doing some kind of video while I am there not sure if it will be a vlog or an interview with my best friend so make sure you are SUBSCRIBED to me to find out.
Yes September is here, the leaves are starting to turn, and there are Halloween decorations in the shops! It is my favourite time of the year, so much cosier and I absolutely love the relief of getting away from the heat of summer and the settling down of my symptoms.
As I usually do when there is a big change in weather, I have gone through my wardrobe and got rid of things…and replaced them with things from the sales! Usually I buy a couple of things and leave it at that but this time I have decided to change my style a lot more than I ever have before.
My style is usually grungy and hippy with not a lot of focus on what I wear because I rarely go out and even more rarely ever see anyone! However, after watching people on you tube who wear more of a vintage style and are confident enough to wear more feminine and less ‘fashionable’ clothing that can be found in charity shops and antique places.
Now I have always wanted to dress more 1930s-50s not rockabilly, but more authentic? However, I stand out a lot when I am in a wheelchair or using my walking stick and I kind of always wanted to hide away? Well no more!!!
If you watch my latest You tube video HERE then you will see some of the items I managed to get in sales to start off my collection. I am going to be thrifting and keeping my peepers peeled for cheap places to get this sort of clothing. I love that these pieces suit my hourglass shape more and they will not go out of fashion so I will be able to wear them without worry next year.
I have been changing things up a lot in my life recently and it feels so good to get motivated and get my style and our home looking more like we want it to. I feel so much more inspired and motivated, so maybe if you feel a bit stagnent it is time to clear things out and redecorate a room, or just donate some old clothes that you no longer wear?
So as you might know, if you have been reading my blog for a while, I have been struggling with my depression for a while now. Our living room has felt cramped and clutttered for a while now and so me and my husband thought we would have a change. We cancelled Sky TV because we never watched it, and that meant the TV did not have to be next to the window like it always has been.
We donated some furniture and things and that freed us up to bring down Lee’s grandmother’s rocking chair and use some savings to get a couple of antiques. Now after a couple days of craziness in the living room the space feels bigger and calmer. We both love spending time in there now and nothing beats feeling relaxed and calm in your own living room.
Now it might seem strange, but I have also found my mood has drastically changed since the change round as well! I had not imagined it would make a difference, but honestly I do feel lighter and happier and I don’t know maybe the old addage ‘a change is as good as a rest’ is true?
Now I am not suggesting we all go around changing our whole lives around, but maybe now and then we need to take care of our surroundings:
- Pull furniture out and give it a good clean
- Declutter your space and get organised
- Donate any furniture or ornaments you are not attached to
- paint or recover old furniture to give it a new lease on life
- Get some new throw pillows or blankets/throws to brighten up the area
I hope this new brighter mood lasts, but even if it doesn’t I hope that I can always appreciate the things around me. Buddhism and Christianity teach that we should not hoard things or become too attached to them…maybe that is why I feel so much lighter now?
First of all I apologise for this post coming to you a little late, when you read this post I hope you will understand why I needed a little time to process things.
So last year my beloved Grandad passed away, he was my best friend and I spent much of my childhood in their bungalow with him and my Nan. Losing him was hard on everyone in the family of course and it took us some time to recover from losing him in our lives.
What we hadn’t known while he was alive was how bad my Nan’s Alzheimer had become because he would cover for her. My Dad has been incredible taking care of her, but it came to a point when she was not safe at the bungalow alone with people just popping in anymore.
She was assessed and has a place in a wonderful residential home not too far from us, where she will be safe and cared for 24/7. It will take a lot of pressure off my Dad and I hope will allow him to get some of his relationship with her back. He was working so hard to look after her that I could tell he was beginning to resent her because he was so tired and missing out on things. I am so glad that she will be safe and he will be able to relax knowing she is.
However, her getting this place means letting go of the bungalow she lived in with Grandad and it almost feels to me like losing Grandad all over again. My Nan has kept a few posessions, and me, my Dad and his brother have taken the things that are treasures to us. I was going to go to the bungalow with my dad to look for myself, but in the end this was not possible and in a way I was glad to have only happy memories of the place I spent much of my childhood.
I now have the small table that I ate on as a child, ornaments and trinkets that I saw about them, and pictures that meant so much to me as I grew up. I will treasure all of these things and the memories they hold for me every day, however getting them feels so sad and I am struggling to process by it is upsetting me so much when I should be thankful my Nan is safe and not feeling so down.
I am a Buddhist Christian, and as such I try to live in the moment, I am still learning this valuable skill, but these events have shown me I am so attached to the things that represent those I care for. I have the memories and they cannot be replaced, but I love having my Nan and Grandad’s things about me. Does this make me too materialistic? I am very reflective and a little lost right now, but I know one day I will look back and see a big lesson this experience taught me.
This week I wanted to talk about fatigue and how hard it can be to just want to get out of a warm, comfortable bed when all you want to do is rest. When you wake every morning in pain, your joints stiff, your head aching and every limb hurting on top of extreme fatigue it is so hard to want to get up and get your jobs done.
I spoke on this weeks Chronic Illness Video (HERE) about how fatigue feels, it is not just being tired, or how you feel if you couldn’t get comfortable at night so check that out if you think it is! Fatigue is deep inside extreme tiredness that makes it impossible to want to do anything.
Now if you have been reading my blogs for a while, you will know that I am a very motivated person and if I set myself goals I will do anything to achieve them. The problem comes, when your body is heavy and tired and you cannot think straight enough that you are still a person who wants to do things and be a human! You have dreams and goals and when day after day you are not well enough to achieve them that can be incredibly demoralising and depressing.
It has taken me a long time to come to terms with this, I have been sick since 2002 and I have just started to be able to do it! But, being patient and not letting guilt take over can be the first steps in accepting what you can and cannot do and then coming to peace with your illness and your goals.
In Buddhism, acceptance and peace are the main goals and applying that to my illnesses has helped me to relax that inner need to do the housework every day and do a yoga routine every day and take the dog out and cook healthy dinners and…..There will always be ‘ands’ but take a breath and remember that being the perfect person is not something we can ever achieve.
I am reading a book called ‘How to live well with chronic pain and illness: A mindful guide’ by Toni Bernhard and to quote her:
“The unrealistically high standard at work here is that we don’t think we should be chronically ill. Even though 130 million people suffer from chronic illness in the United States alone, we live in a culture that repeatedly suggests that, with proper diet and lifestyle changes, no one need be sick and no one need be in pain. When we’re not living up to what we perceive to be that cultural standard, we feel embarrassed.”
For me that really hit the nail on the head, it is society constantly telling us that we should be perfect, loved, and happy if we just eat the right foods, do the right exercise, everything will be sunshine and roses! But when famous people, who the press tell us are perfect and to be like them, are committing suicide, taking drugs and turning to alcohol to cope…can we really expect our lives to be perfect?
I think what I am trying to say is, do not let society make you feel less because you couldn’t do that load of washing, or you were in too much pain to walk the dog! Be prepared to have days, sometimes weeks even months, when all you can do is rest and do not feel less because you need to just sit.
My best advice is to use a slow cooker and have meals prepared in the freezer, have family help you to do things and do not let anyone ever make you feel less because I know you are fighting every day just to want to get out of bed and some days that is enough!