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!
Life is stressful, and we can often focus on the negative. Perhaps because of health issues, problems with work, or any event that gets in the way of our happiness, we can take on this ‘glass half empty mentality.’ Instead, we should practice gratitude. Finding ways to stay positive instead of dwelling on the difficulties in life, we should be able to rise above our stresses and think and feel better as a result. It’s not easy, we know, but when you stop and think about it, there is so much to be thankful for. The following are some of our examples, but you may be able to think of more.
- Be thankful for your parents
Our parents aren’t perfect, but then nobody is. Be thankful for what they have taught you, and for the love and care they have shown you in your life. Be sure to tell them too. They won’t be here forever, so before they enter into a care home and leave this mortal coil, tell them you love them, appreciate them, and are thankful for them. Hopefully, your children will do the same to you one day.
- Be thankful for the small things
These are the things we often overlook in the day, but sometimes we should slow down and take notice of them. Examples? Be thankful for the sun and the rain; be thankful for the water from your tap and the other things we often take for granted; be thankful for the daily sounds you hear, from birdsong to the laughter in your child; be thankful for the things that make you smile. Your day is packed with these things, so stop and pause at each and offer thanks for every one.
- Be thankful for life’s challenges
Admittedly, this is the toughest of them all. How can you be thankful for those things that give you stress and a headache? How can you be thankful for the things that could negatively impact your day? It’s not easy, but then you shouldn’t let them get you down, either. Look at these challenges as things that will help you grow. You have dealt with your challenges before, and you will do so again. Sometimes, the obstacles in our life are there for a reason, but by rising above them, you will become a better person. Get help when you need it, of course, but be thankful for those times when you have developed as a result of your hardships.
- Be thankful for your life
God brought you into this life for a purpose, so be thankful to Him. Be thankful for the good things you have done, and the opportunities you have been given. Be thankful for your strengths as well as your weaknesses, as you aren’t supposed to be perfect. Be thankful for what has happened in your life, what is happening today, and what is still to come. You only have one life on this earth, and it’s a precious one. So give thanks today for you!
Keep the thanks coming
There is so much to be thankful for; we need only stop and consider the blessings we have in our life. What about you? Is there anything we have missed? What are you thankful for? Let us know – we will be thankful if you do!
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!
Yeah so 16th March I turned 40 and I was not exactly happy about it, though with my poor health over the years and my struggles with depression I was determined to enjoy it. This was also my first birthday without my Nan and Grandad I was closest to so I wanted to make sure I made them proud and had fun, so I had to look at pacing for special occasions so I could survive my plans!
I knew I had to do two things so that I could celebrate with both my parents separately and so I decided to spend my birthday, which fell on a Friday, at my favourite museum. The Black Country museum is so cool they have recreated a small Black Country town and it is amazing I just love it and I have a vlog ready to put up on my You Tube channel so make sure you are subscribed!
On the next day I arranged something a little less out in the world and involving so much getting out of my wheelchair, so I decided to go for afternoon tea. I have been doing this for the last few years at Weston Hall and I invited one of my best friends Jess, my mom, her parents and two of her sisters as well as my lovely husband.
I knew that recently I had been working on my fatigue with the Heal Chronic Fatigue Course, so I was wary of letting all that hard work slide by doing too much. I also did not want to end up triggering a flare of my chronic illnesses and I was aware of the fact that my husband has epilepsy. This causes him to be very tired and suffer with headaches and extreme fatigue if he does too much which can trigger a seizure, I have to look after him too.
What I had not factored in was Lee wanting to get a new phone so we ended up going to a local shopping centre on the Thursday and he treated me to some presents because he is so kind. So I went from rarely leaving the house, to being out in the world in potentially loud and anxiety triggering situations for three days in a row. Honestly, I was not sure I would survive, but after resting all day yesterday (Sunday) today I was able to get out of bed and I have noticed I am tired and my pain is up, but it is manageable and yeah…I am pretty amazed so I thought I would share what I did to try and keep on top of everything:
- Utilise wheelchairs when possible – The museum I went to supply wheelchairs if needed which is so useful as I cannot walk far and I struggle with pain which means I need to be able to sit down regularly. However, as this is a living museum I did not want to take my own wheelchair as it would get filthy, so after checking their website I was thankful to be able to borrow one there. Checking this took no time and it saved me so much energy and pain because we could wheel me through all the coal and cobbled streets without worrying about it and I could just enjoy!
- Be prepared for change – Always make sure you are well rested before a group of events are together, no housework, no exercise just rest in the week or so before to save up spoons just in case your husband decides to take you shopping!
- Utilise alternatives – I suffer very badly with social anxiety, so I bought some CBD anxiety tea from my local health shop, when we got home each evening from these things I took a cup. It helped me to relax and rest and it also helped my pain. I also used my heating pad in the evening and massage oils to help my pain and fatigue. We all have different needs, but finding things that help other than tablets from the doctor will support you so much when you are trying to cope.
- Schedule rest – This is so important! On all three days I was in bed by 6pm with my heating pad and Netflix just resting and watching TV. Always make sure you have times when you can walk away and rest, whether it is a little nap while your husband keeps family company at Christmas, or just making sure you are in bed extra early, this is so important! If you have busy days make sure you allow time to rest and making sure family understand it is that or things do not happen is essential to cope with being social and chronic pain and fatigue.
- Dismissing guilt – It is so easy to feel guilty for having fun, I think society makes the disabled and chronically ill feel like they have to just sit on the sofa and do nothing. However, yes I did see friends and family, yes I ate too many calories and yes these things made me feel more in pain and more tired. But I am of the opinion that my life has value and I refuse to be forced to never see friends and to not have fun for fear of not meeting others expectations. I will not let anyone ruin my great memories and fun I had for my birthday which was so hard for me to cope with but it was lovely and yes I am still smiling!
- Be honest – I am lucky, my friends and family understand I have limitations, not everyone has that. So instead of pretending you are well, pushing through the pain and staying up too late so others are happy…be honest. Speak up about needing a wheelchair, or to take a break and grab some tea and extra meds, and do not let anyone make you feel less for needing these things.
- Give yourself a break afterwards – Planning fun activities is harder for us spoonies, but do not forget to look after yourself afterwards too. Yesterday I did not get out of bed until lunchtime and I was back in bed by 6pm, I made sure I got all the water I needed and I rested I made sure I had this scheduled and I did not guilt myself or expect anything. Yesterday was a difficult pain and fatigue day, but so worth it for those wonderful memories!
I hope these tips and tricks I utilised will help you to be more social and to celebrate things that need to be celebrated. So many of us stop being social because of our health, but hiding away is detrimental to our mental health and we will lose our ability to keep friends and lose valuable fun memories if we do not take the time to plan and be careful.
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?
So it is getting closer to Christmas, with plans for visiting relatives and going out for dinner on the day as well as visiting my elderly Nan are all hovering over me. Of course, my body has chosen right now to get a cold and to hit me hard with fatigue that leaves me laying on the sofa unable to think straight no matter get dinner going!
My wonderful husband has epilepsy and his medications make him drowsy and tired, yet he comes home from work and makes dinner, helps me undress and get into bed and listens to me natter on and on about TV shows and Instagram and whatever else is in my head!
The problem is that I am constantly hit with guilt, I am forever saying sorry to him and that drives him insane! But I do feel so guilty, about him having to cook after being at work all day and I just hate that I feel like a useless blob on the sofa!
So much of our self-worth in society is tied up in what we do for a living, where we live, how we look and if you are unable to keep up, judgement comes from inside as well as from society at large. I find even my mother, who has Multiple Sclerosis, give me looks and makes comments when I ask Lee to pass me something or to help me. So when it even comes from those we think should understand how are we as chronic illness sufferers meant to keep our heads up and not drown in guilt?
I know many of you will understand what I am saying and will probably agree with a lot of points I have said, but my question is if we cannot do the housework and we need to put on family and friends how do we push passed this guilt that comes with fatigue? How do I as a woman who prides herself on having a clean and tidy house, deal with being unable to keep up with keeping everywhere clean? How do I pass jobs on to my husband when he is already tired from work and not feel like the most awful failing housewife?
Usually, I like to give tips and ideas but this time it is me asking for them: How do you keep your self worth going when you are unable to work or keep up with housework? How do you push passed the guilt that comes with times of extreme fatigue? Answers in the comments please? I will hopefully do a follow up to this post soon with some conclusions and helpful ideas to help my fellow Spoonies keep their self worth high!
Well it is that time of year again, I have cards to make, presents to wrap and right now I just want to fast forward to January and be done with it! Now do not get me wrong I am not a Christmas hater and I am not one to be compared to The Grinch at all! In fact, I always loved this time of year and looked forward to seeing my family and giving presents to people I love. I enjoyed the cheesy films and decorating the house….
Then my Grandad died, and my parents split, my Dad now has a new family he is spending Christmas with and my mom is spending it with her friends and my Nan is staying in the home she now lives in for her dementia. This will in fact be my first Christmas not eating dinner with either parent or my Nan, me and my husband are going to be eating Christmas dinner together with our dog in a local pub.
I have decorated our living room, but that was so tiring and the added time and effort it takes to clean now I have extra things to move makes me wonder why I even bothered! I have not yet recieved a single card, and no invitations or planned time with friends leaves me feeling extremely lonely. I feel very lost and nothing feels right and I have this unsettled feeling all the time which is triggering both my depression and anxiety and overall I am just lonely and miserable!
However, I am not the sort of person to give up and I am putting a few things in place to try and keep my mental health under control while I navigate this time:
- Meditation and prayer: I am someone who tries to keep myself centered and I do that by looking to God. I try to spend time every day meditating and talking to God, my faith is something I take very seriously and it really helps me. Now I am not trying to say everyone go find God, but I am saying we all have something that helps keep us grounded whether that is a best friend, favourite song or your faith. Concentrating on and holding onto this really helps in times of trouble so don’t knock it until you try it.
- Exercise: Depression wants us sitting around feeling useless and doing nothing, I find walking around my living room, doing Yin Yoga, or just dancing to a song I like are all things that can really help shake off depression even just for a little while.
- Keeping busy: It literally took me most of today to work up to being bothered to write this blog post, but that is the depression not me who loves writing my blog. It is best to keep busy in order to stop those negative thoughts clouding in and taking over. No matter whether it is learning a new hobby, reading or just planning what next year has to offer try to keep your mind from taking over!
- Mindfulness: Now this is simply taking a moment to concentrate on this moment without judgement. Just stop and take a breath, take in your surroundings and stop those thoughts it really can change everything to just step back and realise we live in this moment and not in the past or future where depression and anxiety live.
- Be thankful: I try every day as I get into bed, to list things I am thankful for over the day. Things like doggy cuddles, cups of tea, being warm, not needing to nap, etc. It really helps to stop looking at what we do not have and starting to appreciate what we do have. This time of year adverts are everywhere, people on social media bragging about buying so many presents, and movies that show the ‘perfect christmas’. In reality, nobody needs 500 presents, kids just want to be loved, and perfection does not exist. Be thankful for what you do have and can do and stop trying to keep up with the Jones’!
- Avoid adverts: This is related to the last one, but I turn off or mute all adverts on TV and you tube, I do not want those toxic 2 minutes in my life! They make me feel like I want so much and none of it is actually needed! Take the pressure off by turning away from adverts and instead take those moments to be mindful, or cuddle the dog!
I hope these small things are manageable for you, and I hope this holiday season is better than you imagined, and if you ever need to talk my emails are always open.
- Samaritans (116 123) operates a 24-hour service available every day of the year. If you prefer to write down how you’re feeling, or if you’re worried about being overheard on the phone, you can email Samaritans at email@example.com.
- Childline (0800 1111) runs a helpline for children and young people in the UK. Calls are free and the number won’t show up on your phone bill.
- PAPYRUS (0800 068 41 41) is a voluntary organisation supporting teenagers and young adults who are feeling suicidal.
- Depression Alliance is a charity for people with depression. It doesn’t have a helpline, but offers a wide range of useful resources and links to other relevant information.
- Students Against Depression is a website for students who are depressed, have a low mood or are having suicidal thoughts.
- Bullying UK is a website for both children and adults affected by bullying.
So a couple of posts ago HERE, I talked about how I felt the NHS had let me down because since my diagnosis was changed from Multiple Sclerosis to Fibromyalgia and Chronic Fatigue Syndrome. I have had hardly any medical intervention since then and have felt like nobody cared, this started me feeling depressed and lost and honestly I had stopped going to see my GP because I never got answers I wanted and I just put up with worsening symptoms.
So after thinking about it for a little bit, I sent an email to my doctor’s surgery with an explanation and a link to that post. I wanted to see if it would make a difference and I wanted to make sure that this kind of thing did not happen to anyone else. I suspected that I simply fell through the cracks of an already overstretched and underfunded NHS, but I am still a human and it was about time I needed to be my own advocate.
I heard back early the next day from the surgery manager who said they were very sorry about how I felt and the doctor wanted to see me. I got a phone call later that day and I have an appointment to discuss my concerns and hopefully get some of my symptoms treated and referred to the right people.
This really did reinforce for me that I am my own advocate, and though I know the NHS is given a raw deal by the government, and though I used to be on the other side, I deserve to be treated better. I read a lot of blogs run by other chronic illness warriors and I follow them on You Tube and I see the sort of treatments that they recieve and I have been given none of those options. So this week I am going to be researching and printing things off and taking it all to the doctors because I need more than I am getting.
So this was a big lesson to myself, but also I hope that it inspires all of you that if you are not feeling supported or well treated by your medical team speak up! I am going to be taking my husband with me to back me up and I am going to make sure together we are heard…nobody can speak up for you unless you try to speak up for yourself.
So if there is any research or treatments you think I need to look into leave me links in the comments and I will get researching!