First of all sorry I needed to take a little break but it has to be expected when you run a blog with chronic illnesses! Also I had my PIP assessment which is to see if I qualify for a benefit here in the UK and the stress and worry from that has not helped!
However, here I am half asleep and frankly p***ed off!!! My fatigue has flared and I honestly feel like I am trapped inside my body! I try to keep up with my housework and to do things that make me feel human, like shower and wash my face and get dressed, but it is a constant battle! I wake up every morning after sleeping like the dead feeling just as tired as the night before and yet I have things I need to do on that day!
I find myself feeling so guilty when my husband is at work and I am just lying about doing nothing but staring into space. I wonder if he would be happier without me and if I am just a useless lump. Then I have to try and shake off the depression and try not to do an impression of Eeyore so I can hopefully pull myself out of this slump and get things done.
I wish I could say this will be a useful and positive post but honestly I am just fed up! I have things I want to get done, like my yoga practice and bible study and a little housework just like I could before and yet I feel so tired and my body feels so heavy I can barely think straight no matter get jobs done!
So instead of giving out tips and tricks of how I deal with things I am reaching out to the chronic illness community and asking for tips? Do you suffer with fatigue and if you do how do you make sure that jobs and goals do not just pile up while you nap? Leave me some comments here or on social media links are around let me know please? I need something to help before I go mad!
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!
I am feeling a little overwhelmed and tired, and it is all because I want to be able to be a person a normal person and I want to do things and get things done but my body feels so heavy and painful and tired! I sometimes feel like I am trapped in a body that does not want to do the things I do so it tries to hold me back and stop me from doing what I want to do!
For example, today has been a good day I have done a short yoga sequence, cleaned the bathrooms, had a shower and now I want to write and catch up on things…but now I am in pain in the back of my head, my shoulders and upper back. I also feel so tired I keep having to retype words because my hands will not do what I need them to!
Part of me thinks it would be easier to give up and live in a dump let myself get fat and my brain go numb watching daytime TV!!! However, I am not built that way, I need to learn and grow I need to keep on top of my body which is squishier than I’d like, but I can only do my best right?
So, I know this post is a little moany, but to be honest that is how I feel at the moment! My husband is struggling too I think it is the weather! In the UK right now it is cloudy, hot and the air feels heavy. This kind of weather gives me a lot of headaches and my pain is always worse when the weather is up and down like the typical British summer.
Now, if you read my blog regularly you might be wondering how I am going to get myself back to the positive again????
Well, I have thought long about this and I think I am going to tackle things in smaller chunks! I am going to spread my work out through the day so maybe 10-15 minutes three times a day instead of trying to do it all in one? Also, maybe break down my cleaning even more, so if there are a lot of ornaments in a room, maybe clean it over two days? Yes when pain and fatigue get’s overwhelming it can be easy to give up and yes I have a little weight to lose right now, but if I am patient and keep on fighting I can do this!
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!
Summer is here in England, and as we Brits know that means it is hot, humid, stormy and can be raining in the morning, blazing sun in the afternoon and that night have a storm! The problem for us fibromyalgia sufferers is that means our symptoms start to shout and make themselves known and mine certainly are!
I have been having a lot of sinusitis, headaches, pressure migraines, burning pain in my arms and legs, and increased pain in my shoulders, upper back and neck…basically I hurt everywhere and the medications I am on from the doctors are not really helping anymore! Usually I would make an appointment to see someone and get my meds reviewed, but at the moment that is not really an option as getting an appointment means waiting about a month or begging and pleading every day!
So being typical me I hit google for alternative therapies and the one thing I have not been trying is supplements. The problem is as you can see from THIS LIST is that there are so many recommended for fibromyalgia how do I know where to start? I am feeling very lost and overwhelmed and wishing I could win the lottery so I could maybe have all the latest treatments and get rid of the daily pain!
However, as that is not really an option I have ordered two books from Amazon one is From Fatigued to Fantastic and Pain Free 1-2-3 both by Jacob Teitelbaum. I got them used and they are coming from the USA, but by getting them second hand I am saving almost £25!! I am someone who does believe in Western medicine, afterall I was a nurse before I got sick, but honestly I feel like it is letting me down and I need to take control of my own health!
When I was wrongly diagnosed with Multiple Sclerosis I had a psychiatrist, a neurologist, physiotherapy, accupuncture, even people to cut my toe nails so that I wouldn’t hurt myself while unable to feel my feet. Now I have a different diagnosis all of that has gone away, and it is really hard for me to get in to see my GP. My symptoms however, have not changed and I sometimes feel like I have been kicked out and left to deal with it all by myself. Well if that is the case I am going to study and get my symptoms under control by myself I am not going to let it beat me!
So readers, what alternative therapies do you use? What have you tried has has or has not worked and are there any books that have helped you?
Phew what a week!!! Monday I travelled alone by train to London to stay with my best friend Louise, we both have chronic illnesses so we mainly rested, but we did go to see two plays! And then I came home, rested for one day and then went to a convention where I met some of the cast from IZombie!
London is overwhelming in itself because of me mostly being home alone and being in a small town, but add into that a convention and I feel dreadful! My pain level is about 11/10 and my fatigue saw me not get out of bed until 3pm today!!! I need a holiday to recover I think, instead I am at home and using everything in my arsenal to be able to get my body through it!
I love having these little adventures, but my body really struggles with it so I have to be careful and rest lots, which I did. Thankfully Louise understands and we only went to the plays with nothing else planned while I was there. We spent a lot of time in our PJs and resting which was a lifesaver when I went to the convention!
Now I have a pressure migraine, I am so tired and my upper back in painful, my arms and legs are burning and overall I just need time to recover. I do struggle with giving myself a break and understanding I need to rest more than most people. My father my whole life made jokes that I am lazy and he still does it now, I often feel like I let him down because I am not able to work or to keep up with things like he can.
However, I realise he just doesn’t get it and I have to quiet those voices that make me want to push myself to the point where I have a flare and end up needing more meds or referrals for more care! Instead, I need to rest, to use whatever medications, lotions, potions, heating pads or anything at all that can help my body recover. I wish I could ignore my body and push through but that would be stupid, I am not well and I need to give myself a break. So I will look through my photographs from my adventures and remember it was all worth it!!
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!
“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “
So today I get to talk about a topic close to my heart and that is because I was given the chance to read the book Whole Health Life and watch a film called The Connection. Both were passion projects written by a woman who was once crippled with pain from chronic illness.
When we meet Shannon Harvey in the book, we learn that she was trying to get ahead in her chosen profession of journalism when she first got sick. This really resonated with me because when I first got sick I had only been qualified as a nurse for 18months. Like Shannon I found the stress of the job and not looking after myself when I was not at work were really the crux of why I became so sick so fast and I think why the Drs were baffled at first.
Like the author, it took 5years for me to get a diagnosis of Multiple Sclerosis and when I heard that I basically gave up. In the book and the film Shannon and the specialists she interviews, really show that the way the doctor gives you your diagnosis can really go on to influence how you go on to survive from the illness. For ten years I basically gave into my symptoms and gave up, and I found a lot of what I read in the book reflected my own journey and because of this there were times when I found the book very emotional and difficult to read.
It is hard to look back and think “wow I wasted a decade…” but yeah I did! Then one doctor’s visit I was told they had made a mistake it was not Multiple Sclerosis but Fibromyalgia with some neurological issues. When I got home from that I made a decision, I started to eat better, reduced the amount of chemicals I used, took up daily yoga and meditation and started to work on my depression and anxiety.
I feel a lot better after making that decision and it is the main reason that I wanted to start my blog, chronic illness is on the rise and we need to change the way we live or things are going to be bad! The film and the book really reinforced my decision to face my illness and fight it, I found it to be incredibly inspiring and uplifting as well as pretty challenging.
This is not an easy fix, nor is it a how to get better if you follow these easy steps and to be honest I am thankful for that! So many times people prey on the sick and try to get us to sign up for all sorts of potions, lotions and contraptions…however this book and film are merely made to give the facts. Everything is scientifically backed up, and nowhere in here is there something to sell. But, if like me you read this book and watch this movie and come away inspired to research alternative therapies, look for meditations, read scientific journals and you are willing to put in the work every day then you can find your way back to being healthy.
The WEBSITE for the project also has a brilliant podcast, as well as incredible resources that help you put the things you have read into the context of your life. I found this to be so helpful and really helped me to apply the things I read, I would for sure recommend reading the book first like I did because it has a lot more information that the film and goes a lot more in depth into her life and the research she found. The film is easy to follow and understand which I was worried about because it is interviews with doctors and health professionals and scientists, but I found it to be eye opening and really cemented the conclusions I had come to by reading the book.
You can find the book available HERE
The film is HERE
Have you read the book? If so what changes did it inspire in you and what things do you hope others will take from it? Leave me a comment I would love to talk about it.