Here in England we are having a heatwave, social media is full of people spending time with friends, and almost every night I can hear the sounds of BBQs! Usually this is a time when people get together, and because of this I think my loneliness is making itself known.
As you all know, I am working on myself very hard at the moment, meditating like mad and I am currently reading the bhagavad gita. I am trying my hardest to grow and learn and to come to be content in the moment and with the life I have instead of wanting and yearning for what others have. To be honest, I am changing a lot and I can feel how meditation and mindfulness is really helping my depression and anxiety. I am really proud of myself, but I know I still have a lot to learn but regular readers will know I love to learn new things.
However, I am mainly housebound, and with the heat I cannot take the dog out because I keep having dizzy spells. Just a few days ago my husband took me out for a drive in the car and a short walk and that was the first time I had left the house in nine days! This realisation really showed me that I am so very isolated in a lot of ways by society and that really makes me sad.
Last week, on the blog, I talked about how we all need to be kinder to one another and look out for people around us who need us. I wanted to try and encourage everyone to make sure the neighbours and family members around us are OK, but that is lacking in my life. I see people around me who don’t live far having fun and I need to be honest and say it makes me feel really left out and alone.
I have the most wonderful husband who is home as much as he can be, but he is out of the house 12 hours a day to travel to his job and work an 8 hour shift. This means most of my time is spent alone just me and the dog, who strangely enough keeps me sane. Now I would love it if my husband could be home all the time, but right now that is not really an option. So most of my waking life is spent alone, and I am sure that I am not the only one in the chronic illness community.
Now while doing research on loneliness I found that The Red Cross is running a Get Help with Loneliness Campaign because they have seen how being alone too much can affect a person’s mental health. I checked but there is nothing available in my area, but maybe there is where you live? If you are able to you can also volunteer just a few hours a week to spend with people like me who face loneliness and isolation from society. Let me know below if it is something you would use or if you would like to volunteer with them all the information is on the page above.
Feeling guilt with summer fatigue is so hard, it seems to take all the motivation out of me! I am trying so hard to keep up with things but all I want to do is sleep and it is not good at all!
Here in the UK we are having something of a summer heatwave, and though I am sure a lot of people are really enjoying the sunshine and heat that we are having for a change it is very different for me. I have chronic illnesses that cause fatigue anyway, but when the sun comes out it can make my illnesses unstable and it very hard for me to keep up with the day to day tasks that I need to do.
Strong sunshine that pours through my kitchen is lovely, but if I am in there for longer than a few minutes I find myself fighting back a migraine. In fact, at the moment I have a halo of pain all around my head just threatening to hit me with a migraine at a minutes notice! I am having to use sunglasses just to get a glass of water at the moment and forget washing up where the sink overlooks the window!
Now I have been working hard recently on my mental health, on working with a therapist and with my faith to find ways of being kinder to myself. Things like mindfulness and chanting have made a huge difference to my negative thoughts and I am incredibly proud of myself. However, today I have basically slept most of it away and I feel like I have wasted a precious day I could have done some gentle yoga, maybe dusted the living room, but I have done nothing but watch Great British Bake Off like a Zombie!
Guilt is something everyone with chronic illnesses deal with, either it is pressure we put on ourselves or it is family or friends making comments. The pressure in society to be productive and to work, work, work is why most people now are coping with mental health issues I know this logically but when I am alone I still hear that voice in my head saying I should be doing more. I do hate it and I am trying so hard to be kind to myself and look after myself but I really need a little help!
I am determined to cope though because it looks like this hot weather is here to stay, and though I would love to stay inside like a hermit I have doctors and hospital appointments to get to. So I have been thinking about how best to stay cool and here are some of my ideas:
- Drink more water – might seem obvious but as it is hot I need to up my fluids intake and make sure I don’t get dehydrated
- Listen to my body – I need to slow down everything I do, I am not the fastest anyway, but I need to sit down more and make sure to listen when I need to rest
- Wear sunglasses – Yes even if I need them indoors it shouldn’t matter, I have to protect myself from migraines and keeping my eyes from being blasted by this bright sunshine is a great start
- Make sure to wear suncream if going outside – Many medications can make us more sensitive to the sun, but also I am mainly housebound so I need to remember I am not used to the sun and will burn easily
- Be patient – even people who are well are struggling in this heat so why do I think I won’t? I need to remember that and be patient with my body.
So wish me luck in working on the guilt that comes with not being able to help around the house, and if you have any tips and tricks for coping with this heat let me know down below?
Well we have had quite the eventful week and I really thought it would leave me with a lacking in spoons and increased pain and overall feeling dreadful…I am still waiting for the bump! I guess a change is as good as a rest?
Not that my fatigue and pain are not increased, of course they are I still have the same illnesses. However, it is my mood that is different and my outlook, I find myself quite happy to rest instead of feeling like a useless lump and to be honest it is so shocking to me I have to talk about it!
Earlier this week we had a decorator come for three days to wallpaper and pain our hallway, it is now pink with birds all over it and I love it! It has made the hallway so welcoming and warm and it is so cheerful I just love looking up to see it. I will be honest though, having someone in the house did make my anxiety really high, but I managed to make small talk and felt really proud of myself.
I took the week off the computer, I rested and I even went to a Hindu meditation class where they introduced us the the different forms of yoga and it was really inspiring. I loved hearing about the Bhagavad Gita and how to apply it to my life it really helped me to feel grounded with my spiritual journey.
I am enjoying the journey and I am trying so hard to use the things I am learning, like chanting, meditation etc to battle my anxiety as well as feeling God around me much more. I am also really finding myself feeling more in control of my thoughts for the first time in a long time, and I feel actually happy…a strange feeling that I am really not used to and not quite sure how to deal with, which is kind of sad! I mean surely feeling happy should be how we feel most days, but since I was a teenager I have struggled to feel actually deep down contentment, but I have always longed for it.
I have always heard the saying ‘a change is as good as a rest’ but I guess with my anxiety disorder I always shied away from change and in fact usually it makes me lose control. But right now, I feel so much love and support from Lee who is on this spiritual journey with me, and from God who I feel is actually there walking beside me in a way I never felt before. It has been a difficult week I cannot lie about that, it is hard to be open to new things when most of the time the thought of going outside alone gives me a panic attack.
However, here we are, it is Monday and I am sat writing this to my friends and I am smiling! I know it is crazy to imagine because my upper back and neck are very painful and I feel tired but yeah I am smiling. I am incredibly proud of myself for facing these changes with faith and being as open to them as was safe for me. My husband was right by my side every day that the decorator was here, though he did not sit with me and left me alone so I could talk if I wanted to. He also went to the meditation class which I was so thankful for and I felt so supported and loved.
I hope if you all have change to face you can push passed the things that hold you back and keep moving forward so that you can make your dreams and passions a reality. Ill health does make it hard to be happy especially mental health issues, but finding faith, in God, a medication or a person then you can conquer the world!
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!
Last month was pretty hard for me, I lost my grandmother and I turned 40…yeah I did not appreciate that!
I got a little lost in everything, grief kind of took over and I stopped doing a lot of the things that I love. I stopped practising yoga, I stopped eating three meals a day, I stopped looking after myself and I was miserable! I was feeling overwhelmed with grief and I kind of shut down because I couldn’t process everything that happened in such a short space of time.
I was starting to think that would never clear away and that I would be stuck with my depression at a new higher level. I was considering going back to my doctor to get my antidepressants raised, but I am very disillusioned with doctors right now. I have been depressed since I was 14years old, and I have had fibromyalgia and ME since I was in my early twenties and nothing has changed doctors still just throw tablets at me instead of trying to find out why I hurt and how to treat that…but I digress!
So I was thinking of making an appointment and then April came along…
This month felt different, I started reading again, and I got hold of a copy of Medical Medium, I also finished the Heal Chronic Fatigue course I have been doing since January 1st and you can see my videos about that here. The course really started my interest in alternatives to western medicine and I am enjoying the journey that I have started on. I honestly think looking into nutrition and natural remedies might be the way forward to getting some relief.
So now my depression flare has lifted I feel like I can get back to things again, updating this blog weekly, and my You Tube channel twice a week. I did yoga this morning and managed to dust the living room, and though I am sore and tired I feel accomplished. It feels good to do the things that make me happy again and though I know this new way of looking at my illnesses will take time and research and I need to be patient with myself, but I am excited!
So let me know in the comments any tips and tricks or books I should read? I am going to be documenting this journey as I go both here and over on my You Tube so make sure you are subscribed to both so you don’t miss out when I update.
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 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 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!
So a couple of weeks ago I posted THIS post, in it I spoke of how I feel let down since my diagnosis was changed from Multiple Sclerosis to Fibromyalgia, Chronic Fatigue Syndrome, and neurological problems they did not look into. I felt strange doing it, but I sent the surgery a link to the article and soon was called to see the doctor to discuss it.
That appointment was yesterday and I really do not know how I feel about how it went!
They listened to me and referred me to people to try and help I have been referred to a rheumatologist to hopefully take over the care of my Fibromyalgia. I have also been referred to have ultrasounds on my shoulders to check what is going on and why I am getting so much pain and cracking with them.
I have also been referred to a therapist, I think because of my chronic depression which has flared, but I wonder if they are thinking some of my symptoms are in my head? She did say at one point that Fibromyalgia is a ‘dumping illness’ that is used when no other diagnosis can be found and that it cannot be cured.
I sometimes feel as if Doctors being scientists are only interested in illnesses that can be cured or measured. As my illnesses are mainly causing me extreme pain and fatigue neither of which can be cured or measured they really do not know what to do with me!
I sit here before you frustrated but slightly hopeful, maybe something will be found that they can latch onto and that will get me the help I want. Or maybe who I have been referred to will know the latest research and will know how to deal with my neck and shoulder pain which causes headaches and pain without just throwing medication at me???
I will keep you all informed as things progress, I am unsure what to do about the fact the doctor prescribed me Morphine for pain and feel a little disappointed that something else was not suggested…still I am willing to try anything at this point and cling to the hope that next year will bring me some good care.
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!