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!
The last year has been incredibly hard for me, I lost my Granddad, I had a flare of my fibromyalgia and my depression crashed down on me. I stopped really caring about how my house looked, how clean and tidy it was, I stopped looking after myself and just got lost in symptoms, and depression.
After recently seeing a psychic (HERE is a video about that) I found my depression and grief lifted and I started to realise that I wanted my life back. I might have constant pain, anxiety, fatigue and neurological problems, but I like my life and I am happy. I don’t expect a lot from life and all I want is to get back to daily yoga, meditation, and housework and to have enough energy to cook a healthy meal in the evening.
So how am I going to manage this when my flare has left me with more pain and fatigue though the worst of it has eased along with the depression. Well, if you have been following my blog for a while you will know that I am a planner, and this is how I am going to get my routines back.
I have my week ahead planned, I know what I am going to do and how, and that has left me feeling far less worried and overwhelmed. I have remade up my natural cleaning products and I am back to my determination to lessen the amount of chemicals in my home. I am hoping that with my new plans, my determined nature and lots of breaks I will be able to keep up with the daily routine I started today.
I woke up and took my medications at the usual time and then hit the yoga mat for a gentle 30minute practice, I then lay down and followed a 15minute guided meditation and then a short bible study. I then ate a yummy smoothie bowl and rested for a while before cleaning my living room. By the time I had done these things it was after 1pm and I was amazed at how long these few things took me, however I felt incredibly proud of myself for taking my time and listening to my body. After a shower, I came here and wrote this blog, I am hopeful that by breaking things into shorter tasks and being organised I can do this routine every day.
What I want to say is, life is hard with chronic illness, they grind you down and can become so hard to live with, but if you keep pushing and keep motivated you can still achieve your goals!
At the moment I feel a little like someone just tossed everything that feels safe in my world up in the air and I am running around trying to catch everything!
My husband is a police officer, but he has epilepsy and if he has a seizure he will be put on restricted duty. Also, because of his work he gets very stressed, it is high pressure and he gets a lot of hate from the public etc. So when the headquarters set up a job for officers that are on restricted duties for whatever reason my hubby went for it and got it.
It has longer travel times because he is further away and it is in the city centre so he takes public transport rather than driving. This is of course cheaper and gives him time to read and relax on the train which is great, and the job itself is office based and much less stress so I am really thankful for that.
However, I have an illness called Generalised Anxiety Disorder, which basically means I have panic attacks and fear over things that most people have no issue with. My anxiety is always there and I have had it all my life so I am used to it and day to day meditation helps me to cope with it. However, this new job means that Lee is not at home much more than he was before.
On an early shift he used to be home around 4pm and I would cook and get sorted while he had a shower and it worked really well he was always more tired but we had a system. Now he is home about 6-6:30 and by then I am in pain, extremely tired and unable to stand long enough to cook. By the time he has showered it is time to me to get into bed and it would be impossible to cook for me and I do not want Lee to have to cook after being at work.
Cooking is really important to me, I worked hard for occupational therapy to say I could cook and I have researched a lot so we have food that is not processed or junk food. I have found twice in his first week at work that we have ordered in food because I was not up to cooking so we for sure need a new way! I am frantically trying to find good vegetarian slow cooker recipes which is not easy because there are not a lot of imaginative recipes out there for non-meat eaters!
On a late shift he is home now at least 2 hours earlier which is such a blessing, but he leaves now at about 10am and not 1pm like he used to! Mornings feel like a scramble as he rushes to get ready in time and I struggle to wake up and get my body moving! I am not good in the mornings because my body is stiff, and my fatigue is awful first thing it takes me a good hour or so to wake up enough to get out of bed.
All this change is hard for me to deal with, I am so thankful for this new job and so proud of my guy I could burst, but inside my tummy is like a washing machine and my nausea is pretty bad as well. I am going to take the next few days Lee is off to find some slow cooker recipes I can make on his early shifts so I am not standing for a long time, and finding a way to get our mornings running more smoothly.
I think it is important when anxiety is taking over to breath, it is so easy to forget and let those shallow, fast breaths take over which is part of fight or flight. However, that breathe is extremely unhealthy and unnatural to have all the time, I use the things I have learned about breathing through yoga to slow and even out my breathing so my body can relax and I am not struggling so much with that side of it.
I also step up mindfulness and meditation, both things that stop my mind wandering to imagining terrible things and letting those negative thoughts that tell me I am letting myself and Lee down etc from taking over. I have learned through these things that I am in control of my thoughts they are not in control of me and that was a big lightbulb moment for me with my anxiety and depression.
Humans hate change, we fear it and with my anxiety unnaturally strong anyway it is important for me to thing logically and to remember that by talking with Lee and by organising myself better these things will soon fall into place.
So I stopped working about 15years ago, the decision to stop was not an easy one for me to make. When I had to leave nursing I had several jobs in shops and as office assistants, but in the end I had to step away from it all because I just could not cope. My pain and fatigue made it difficult, as well as my brain fog which if anyone suffers with it, makes it impossible to learn new things and retain them well enough to do at a job when you throw in social anxiety!
At first I just kind of fell into a life online, I had just started using the internet at home and I would spend all day on myspace with my friends roleplaying. This is writing as TV and film characters, yes it is as geeky and as fun as it sounds and I still do it on another site.
However, after I married Lee I started to get out of my general depression which had me living a nocturnal life and speaking to hardly anyone. I started to open my eyes and realise that I needed more in my life than that and I wanted to be a better person.
I started to do yoga, and studying about Buddhism and it opened my eyes to learning for fun. Instead of the pressure that came from a school environment and knowing about exams and assignments, instead of a work environment where I was being watched by supervisors etc, I found it so much fun! I started to open my eyes and realise there is more out there than I thought.
I taught myself very simple HTML and started running a few fansites for actors I love and I still have one for Olivia Colman and one for Michael Rosenbaum. The skills I learnt doing this, led me to starting this blog, which was again I wanted a way to improve myself and to give back to a community of people who are often pushed aside or ignored by society because I think people do not like to face illness or how it could change their lives. And now I have started my own You Tube channel and I am starting to learn how to edit, this is probably my biggest challenge but I am excited to see how I can grow and challenge myself.
I have heard so many healthy people say to me “Wow you are so lucky you don’t have to work I would love to be at home everyday” and yes they probably would for a day or two, but after a while they would be so bored! I think it can be easy to forget that just because someone is sick they are still a person with dreams and goals. I would love to say that being home alone all day while my husband works is great, but I am here not chilling, I am trying to do the housework and exercise and stay sane while battling pain, fatigue and mental fog that makes my memory so very bad!
I will say this though, if you have a dream, or something you want to learn go for it! Where there is a will there is a way!
So I think I mentioned this in previous posts, but I was an only child and because I had no siblings I was kind of spoilt. If I wanted something either my parents or my grandparents would make it happen. I was always grateful for this, as a child you have no idea about money or it’s worth and getting presents make you feel happy.
However, as an adult suffering with depression I found myself turning to shops to make me happy. Because of this I have accumulated a lot of things that I do not need, I have spoken before about my DVD collection! There was a time that I loved seeing my things all around me, but over the last year I have come to realise that I do not ‘need’ most of it.
I think it was discovering about tiny homes on You Tube that helped me realise that materialism meant I was outgrowing my home and it was more than enough room for me and my husband. The decision to ‘spring clean’ my life was one that came surprisingly easily and I am thankful for going through with it, though it gave me anxiety.
Over the last couple of years I have been studying Buddhism, and it is important in that philosophy not to hold onto material goods. This can be difficult to put into practice, however I realised that buying new things did not ever help my depression. in fact there were times when it was made worse because I spent too much or regretted what I had bought.
Depression often makes us feel like we are not worth much, and TV ads, movies and celebrities often like to sell us the idea that buying things will make us worth more. However, I have found since starting to move away from this sort of thinking that it feels good to not buy things because of what others tell us we need. I know those shiny new shoes, or purse that celebrities have look good, but do you really need more than one?
It can be tempting to jump into cleaning your house out, I would love to sweep through my house and get rid of the things that no longer serve me, however I suffer with fatigue and I have to be careful. Because of this I chose to concentrate on one room at a time, I started with the room that has all my books, DVDs and collectables.
I decided to go through my things over a few weeks a little at a time, it is important to know your limits and not push yourself too far. I actually took the whole day to sort the room, and I took a nap half way through the day and I made sure I drank a lot of water. I also used my slow cooker to make sure that I ate well and not give in because I was tired and order take out!
I also would stay away from window shopping, I accumulated quite a long wish list on Amazon, but it was just temptation I did not need. Always remember, material goods might feel good in the moment, but they do not measure up to self-worth, you need to be your own best friend and treat yourself to more than just the latest gadget!
So I am English and I feel as if we are as a society taught that feeling good about yourself and having pride in the things you do is a bad thing. English people love to moan and be negative about everything it is just in our nature and something that I always bought into! Negative thinking was how I communicated with myself and I had a very low opinion of myself because of it.
When I started to study Buddhism and started to realise that I cannot have good energy if I am always negative, I started to work hard to change my thinking. Counselling helped, but it really came from me to do the work of learning to think differently. It took a few years to achieve it, and yes I sometimes fall into old patterns, but now instead of looking back on my day and thinking of all the bad and wrong things I did, I try to think of the good things.
Now yesterday me and my husband along with my dad and his girlfriend went for the day to a large shopping center about an hour from where I live. We tend to go every 6 months or so and I have to be honest in the past I would let Lee talk for me, and I would spend a fortune on junk!
However, this year I am working hard on not being materialistic and on cutting down on the things in my home that do not serve me. So I did not come home with a million bags of stuff and feel good for half an hour, instead I bought a couple of make up products, a t shirt and some Lush bath products because baths really help my pain. I avoided shops like Primark where I tend to buy a lot of clothes I do not need and instead just enjoyed a lovely day out!
The first shop we went into was Debenhams because I heard they now stock Kat Von D products…but they are not getting them there for another couple of months! Instead I went to the Urban Decay stand to have a look because I love their pallets and though they are out of my price range I wanted a dream! However, I soon got chatting to the woman there who told me one of the pallets was on offer if I bought it and a lipstick I saved money and got a free gift.
Now the fact that I bought the offer, and tried on some lipstick there is not the point…the point is that 2years ago I could not even speak to someone I did not know! I would ignore people if they spoke to me or I would have a major panic attack, it was not until I had bought these things and come away did I realise how far I had come! I did all the talking, Lee just pushed me in the wheelchair, I did not panic and I chatted to her without even thinking about it.
I also managed to go into the shop Claire’s accessories, which for wheelchair users is impossible to navigate because all the stands are so close together. Lee stood outside with my chair and I went into the shop on my own, picked out what I wanted and paid all by myself! I was beaming when I came out and even now I feel so proud of myself for being able to do this.
Anxiety is overwhelming and I have it all the time about everything, the world to me is a big overwhelming and terrifying place! However, I am starting to learn to break the surface and do things like this for myself. Never give up, set goals that you can achieve that are small and work up to the big stuff and above all remember every small step is a big achievement if you suffer with chronic illness!