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
Wow I sometimes feel a little frazzled and a little lost, like I am too small for this world and I don’t know what I am doing. I have generalised anxiety disorder, which basically means my mind makes me feel anxious all the time and my body is always in fight or flight mode! Even without Fibromyalgia and Chronic Fatigue Syndrome that in itself is pretty exhausting!
So right now my anxiety is really kicking up a storm, I am learning things about my childhood that I either blotted out or was in denial about and my Grandmother is in a hospice coming to the end of her life. Seeing her so thin with Leukaemia and her dementia really playing her up is so hard because she was always such a strong woman in my life.
I remember her telling me that she once spent time in a mental health facility back in the 1960s I think it was. Back then they were not cared for or looked after very well and she had been ashamed of her experience. However, knowing that she too had a breakdown and suffered with depression somehow gave me strength and left me feeling less alone when others around me were saying I was just being difficult or dramatic.
My grandmother was the person who taught me about God and faith and how I can cling to God in the hard times. Many hours were spent with the two of us looking things up in the bible to answer the very deep and searching questions I was not sure how to answer. She would even call vicars she knew and ask them if they could help and she was just always there to turn to for answers….she made the greatest mince pies in the world too!!
But now I have to come to the realisation that there will be no more mince pies, and without her and Grandad nobody to call on to answer my many questions…I feel kind of adrift in the ocean of life, my grandparents were my anchor and compass and now I am out there alone and I don’t even know how to use a compass! I guess right now I am feeling a lot of emotions and to try and get this all to make sense is really really hard!
However, I am not someone to take emotional upheaval lying down, I am a fighter and I know that this is just another step on my journey. I might feel overwhelmed and lost right now, but so long as I keep the things they taught me close to my heart I cannot go far wrong. I will keep my eyes on God, and I have my own bible so I can search through to find the answers it just won’t be quite as fun!
So if you have been following my blog and you tube channel you will know I am currently doing HEAL CHRONIC FATIGUE COURSE and though it is set up as a six week course I have taken a little longer over the middle weeks. This is because it deals with nutrition and how we often think we are being healthy when we actually are being lied to by companies who use far too much sugar and salt and far too many chemicals!
I have been trying to find a healthy diet to follow for years now, but getting reliable information is so difficult! Just a simple google search will show you just how much emphasis there is on low fat and being thin rather than being healthy!! I have tried so many times but now I am even more determined because after reading what Zoe, who runs the course, says I want to be feeling as well and able to do things as possible.
Since starting the course, I have found myself able to do gentle yin yoga, a little light housework and shower every day which was impossible before! I am working hard to make sure I am getting enough sunshine, breathing fresh air, not relying on electric lamps too much and taking time off the ipad/phone and I am feeling better for it.
Nutrition is the last part of the puzzle, but where do I start??? Budget is a big factor, so I want to start making my own cereal bars and snacks, baking, and making our own bread…but so much is still confusing and hard to navigate. I am working my way through the food I already have in my home as I hate food waste, but as I run out I am making it a mission to replace each thing with a healthy alternative.
This is the only way I have found to navigate this HUGE minefield and to try and actually get good food that is not full of chemicals and sugar! I feel like as a whole diet is hard to understand for me, brain fog makes it hard to understand and I have memory problems that mean it is hard to remember a lot of information.
So one at a time I am going to replace the rubbish with food that has totally readable ingredients or that I have made myself, it is a scary and slightly daunting task but I want to do it. I want to reduce my symptoms as much as possible so I can be the best person I can, so I can keep up with housework and be a partner to my husband instead of someone who depends on him.
What are you doing to eat healthier? Do you bake and cook everything from scratch? Is there a specific diet that you follow? Let me know down below any help is most certainly appreciated!
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.
So this week has been pretty interesting and a little bit of an experiment that I am actually pretty excited about!
So on Wednesday I got to see a headache clinic for a chat and to find out if there was anything could be done for my daily headaches, and weekly migraines. He was the first specialist I have seen for a while who did not make assumptions because I had chronic illnesses but just wanted to help my pain. He listened to everything I said and seemed pretty shocked when I said I had been suffering since I was at university!
I have never been offered any specific medications or other options to treat them so we had a good chat and decided that some nerve blocks might help as well as a couple of medications to take if a migraine hit me.
A nerve block is when local anaesthetic is applied to a group of nerves to block pain, most people have heard of an epidural during labour and it is a type of this. I was nervous, but my best friend has this treatment for her Fibromyalgia pain in her upper back so I knew it could give excellent results.
I thought he would refer me to someone to do this treatment as we were in a doctors office, but he did it there and then! It was strange having injections into my head, I had one at the base of my skull on the right side and one above my left eye in my scalp, and I could hear the needle against my skull which was so weird! He also injected some steroids into my left jaw joint right by my ear which he said was swollen and not opening properly which explains a lot! I felt a bit bewildered as I left, a bit shaky, but overall and most importantly very thankful! I could not stop thanking him for listening and for helping me which seemed to puzzle the doctor but he understood I hope.
The next few days were hard, the pain from the injections was quite bad and I spent the next couple of days in bed resting and feeling quite fragile! Getting comfortable on my pillow was not easy and even now on day 5 I feel like if I move my head too fast it will be painful, I guess because the headache is still there but the signal cannot get through? Still it is so nice to not have a headache and to feel like my head is clearer so I can think a bit better.
I am going to be seeing a Rheumatologist soon so I am going to suggest it maybe for my neck and upper back pain and if it could be done together I might find myself pain free for a few weeks at a time? I know it is wise to be careful and not get my hopes up, but when you have been in pain for so long with nobody really listening it can be nice to have a little glimpse at something that could help!
Have any of you tried this pain therapy? Has it helped and would you recommend it? Let me know in the comments because this is something I am quietly excited about!
I really do hope that this cold snap is not affecting you all too much, I have been reading blog posts and watching You Tube videos by my fellow spoonies and it is not looking good! This year even in Florida there was snow, and I am definitely feeling the climate change that all the boffins have been warning us about.
For me personally it is making it harder to want to drink enough water, my pain is worse, my fatigue is hitting me and my depression is trying to push me around. Every joint seems to hurt and I even dislocated one of my knees just by turning round something that really shocked me!
So how am I keeping going and pushing through while this cold weather tries to push us to our limits? I mean we all have our tips and tricks and if we share them surely we will all feel a little better?
- Keep hydrated: It is not easy to keep hydrated, drinking 2 litres of cold water a day is not easy when you feel cold. I keep a glass beside me at all times and I know if I refill it four times a day then I have had my quota. It has mermaids on it and that helps very much!
- Hot drinks count: Keeping warm is as much about our intake as what we wear, however I struggled making hot drinks because of standing by the kettle and lifting it. But then someone on twitter said they bought this kettle by Breville that is more like a coffee machine, you don’t lift the kettle you put your cup under it! Also, it boils in seconds so no more standing for long periods of time which is incredible it saves me energy because of that and it is so much safer because you are not lifting and pouring boiling water…plus it is in the sale at ASDA which was a big help.
- Bundle up: Yes it might sound silly, but layer your clothes and there are lots of cute blankets for sale out there, like I got a very cute mermaid blanket from New Look before christmas which is so warm and cuddly! I am sat here in so many layers and blankets, and I even wear fingerless gloves in the house to help my hand pain!
- Turn up the heat: By this I do not only mean turning on the heating or the fire, but also things like heating pads, hot water bottles etc can all make the difference between being in pain and feeling good. I also often go to bed early this time of year, I have the electric blanket on and a fleece blanket as well as a thick quilt and it is so nice to lie there warm and safe to read or watch TV.
- Stay in: Most of the time I love to go out, it doesn’t happen often because my husband works, but if he offers even to get in the car and wait while he goes to the shops I am up for it. However, sometimes we have to think about the weather, if it is cold, or icy then going out can be a risk too big to tackle. If us spoonies get a chill, or fall then it can take a lot to recover so don’t be afraid to say no and stay in the warmth and be safe.
So these are some of the things I do, what do you do to keep warm and comfortable this time of year any tips and tricks gratefully received.
First of all, Happy New Year! Yes it is 2018 and there is so much to look forward to and be inspired by when it comes to the start of a new year!
A few weeks ago, I was contacted by a woman called Zoe who has constructed an online six week course because she managed to cure herself of her chronic fatigue. She wanted to ask for a little advice about the website and we got to chatting. Now this post is not sponsored this is all my own wording until I hand it over to a few words she sent me, however she allowed me to take part in the course for free in exchange for me talking about my experience here on my blog and my You Tube Channel.
Now I am always sceptical when someone claims to be able to cure an illness, however I am also someone who would rather try and fail than to never try at all. So over six weeks of the course I will be doing weekly videos on my You Tube about how I am getting on, and then at the end I will post here how I am feeling, and just a general review of the course.
I am extremely hopeful and things worked out so that here January 1st 2018 I am going to be starting the online course. This is something I have been looking forward to and I am hopeful you will subscribe to be on You Tube and follow along as I try out Zoe’s course!
Heal Chronic Fatigue Course and Community
A message from course leader, Zoe:
“The Heal Chronic Fatigue Course came about once I had recovered from several years of severe ME/CFS. I wanted to let others know that it is possible to fully get better and to share my knowledge of healing techniques that have worked for me and for others. One of the hardest things about this illness is the sense of isolation and this is something else I really wanted to change.
The number one message I would like to share with people who have ME/CFS or any kind of fatigue-based illness right now is that it can get better. I know how hard it feels when there seems to be no sign of hope or improvement – but please know that, no matter how long it has been, things can still turn around. I also want you to know that you are not alone. All over the world, hundreds of thousands of people with ME/CFS are listening to the still, small voice inside which tells them that they deserve better health. It’s important to understand that there is no convenient external ‘cure’: healing is an internal process and it can be challenging, but that is why we are a community with such a strong focus on supporting one another.
In my experience, when people with fatigue-based illnesses gather together to learn and share the healing methods that have worked for them, an incredible shift in health consciousness occurs. This involves taking back power and responsibility for our own experience. I understand that this idea can be hard to come to terms with, especially if we have been ill for a very long time, but most people report that feelings of empowerment are a huge, huge catalyst for healing.
The course itself covers three main topics in detail: cognitive, nutritional, and emotional health. We discuss the lifestyle patterns that create and promote fatigue-based illnesses and the corresponding patterns which heal those illnesses. We’ve had extraordinary positive reviews so far from our members and from health professionals. It’s a new model for treating chronic illness – one that focuses on healing the cause, not just the symptoms.
I’m really looking forward to partnering with Beverley and following her journey on the course. I wish her all the best and I know that she will be able to provide some truly valuable insight as well. So, watch this space!
For more information on the Heal Chronic Fatigue Course, please visit: healfatigue.teachable.com/p/heal-chronic-fatigue. You’ll find details about what the course includes, our community, my background, frequently asked questions, and our inclusivity scheme. We know that everyone deserves and has the potential to get better. So, do join us and be part of the movement!”
- Zoe B. C. Emma is a certified Complementary Medicine Practitioner, with qualifications in Nutrition, Neuro-Linguistic Programming, and Mindfulness-Based Stress Reduction.
Wish me luck!!
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!