First of all I apologise for not writing a post last week! There was supposed to be someone to come and assess me for PIP the new disability benefit in the UK. I was so stressed it made my pain worse, and so I was struggling with so much…and then on top of that they just did not show up and did not call to explain! I have another appointment but I am not looking forward to all the stress it will bring. Anyway, yes that is why I did not post anything last week, I apologise.
So, I have been practising yoga now for about six years and for most of that time I have done it daily using the teacher Yoga with Adriene I have spoken about her many times. She is an amazing teacher and I love her style, however her videos are not aimed at the Spoonie community and so it can be difficult to keep up.
I often found that I had to choose whether to do yoga or some housework and practising daily was impossible. I love yoga and I want to do it daily it is my main form of exercise, it keeps my body supple and helps me to be in the moment. I use it as part of my religion as I am Christian Buddist and so I really wanted to find a gentle practice that I could do every day and it would not make me too tired.
Then Adriene uploaded a ‘Yin yoga’ routine which is a form of yoga I had not heard of before:
“Yin yoga is a slow-paced style of yoga with postures, or asanas, that are held for longer periods of time—for beginners, it may range from 45 seconds to two minutes; more advanced practitioners may stay in one asana for five minutes or more.”
I really enjoyed it and though it is not what people picture when they think of yoga I really got so much out of it because it moved my body but was gentle and did not tire me out….so I started hunting for different yoga teachers on You Tube who practiced more gentle routines that could help me to listen to my body more and not make my illnesses worse.
I found a couple of teachers so far, Sleepy Santosha is a woman who is a Spoonie and because of that her routines are designed for people with illnesses. She has a very soothing style, the routines are awesome and she has some specifically for Chronic Fatigue Syndrome and Fibromyalgia. Chakrapod is the another teacher who has routines for specific illnesses but also some that are a little tougher and more traditional, I love her style she is really chill and I would recommend her. I have some others as well and you can find the exercise routines I do in a playlist HERE
Overall, this change has bought me closer to what yoga is really about, it is not about getting abs and doing crazy poses that you can show off! Yoga is anything where you are concentrated on breath and movement, and there are lots of yoga routines you can actually do in bed. This change in my attitude to yoga means I can now do yoga every day and I can still manage a little housework, my symptoms are more level and do not fluctuate as much as they were when I was trying to push myself.
Do you have any yoga teachers like this that you would recommend? If you try any of the yoga routines in my list let me know I would love to know what you think of them.
So this morning I woke up crying, I had slept passed my alarm and my pain was to a point where I was crying. It was so painful literally everywhere that I couldn’t move and I felt sick, I knew I needed my tablets and I knew I had to force myself to eat…not easy to do when you feel like this.
More and more I am finding my pain is breaking through my pain meds, and yes I have tried CBD oil but it makes me drowsy so it would still stop me doing things! When my pain is this bad it is almost impossible to contemplate yoga, and housework or anything other than laying still and trying not to cry.
A couple of weeks ago I had an appointment with a pharmacist to go over my meds and see where I can change things to make the pain relief better. Unfortunately, he said I was on the maximum medications and should not be having much break through pain so if I do to take paracetamol and if that does not help to get a referral to a pain clinic!
I have been to a pain clinic before and they were not very helpful, they said there was not much they could do for me which to be honest was a blow to me. I hate pain, it is so hard to want to do anything when you are in pain all the time. In fact, it makes me want to scream and cry, though I tend to hold it inside because I hate worrying people! Right now I am also having trouble with my ears which is affecting my balance and giving me pressure migraines and both of these things along with my chronic pain make me want to curl up in a ball in bed and never leave!
Now I have had chronic depression since I was 14 years old, and I can tell when my mood is dipping, tearfulness and wanting to hibernate are my biggest tellers and the things I look out for. So right now as I am avoiding talking to my online friends and wanting to be left alone to try to cope with this extreme pain I am trying to look forward, make plans to achieve my goals.
My goal is to be where I was two years ago, back then I was doing yoga, managing to do a little housework, take a shower, walk the dog on a short walk and then rest. This is all I want, so that is where I want to see myself again so I can contribute to keep up with the house, I can look after my doggy, and keep up my exercise.
To get there I am going to see if I can speak to my Dr tomorrow about:
- seeing someone about my migraines
- get referred to the pain clinic
- maybe get myself a referral so I have a specialist overseeing me regularly for my fibromyalgia like I did when my diagnosis was Multiple Sclerosis
Hopefully if these things happen I can start to get myself back to being the person I was and build up my strength, and get myself out of the depression hole I am starting to fall into!
Have you experienced this? Did you get anything out of seeing a pain clinic? What are your goals? I hope to get some advice and tips so leave me a comment.
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!
So as the year sweeps by me I find myself struggling more with my fatigue, in fact I am not sure it has ever been this bad which worries me to no end! I am someone who has always liked to be active, I have always tried to exercise, I love to read and to learn new hobbies and yet at the moment I can more often than not be found curled up on the sofa doing a zombie stare into space!
At the start of this year, I made a promise to myself to start daily yoga and to get more into crafting especially learning to knit and crochet. However, as fatigue has upped it’s game I have found myself struggling to keep up with my housework no matter daily yoga and new skills!
But I am not a woman to be easily dissuaded once I have made a decision I will keep going for it no matter what and those goals are still things that I would love to achieve. So though my body is heavy and my eyes sore and gritty I am going to get with the programme and make things happen…but how I make them happen might have to change a little.
I was trying to power through a yoga challenge on you tube, I have completed it before and was determined to again. However, I just kept on failing and in fact by pushing my body too much I was in more pain as well as more fatigue. So Instead I have concentrated on more restorative yoga routines, my body needs help to keep the strength I have worked hard to get not pushed beyond it’s limit! The fact that I am now able to do daily yoga again is lovely, I am now doing shorter routines that concentrate on relieving pain and helping my body to relax before bed. I am enjoying my favourite hobby again and finding my body feeling so much better!
As for hobbies, well I have kind of stalled, my pain, headaches and fatigue are ganging up on me so for now I am going to concentrate on housework and yoga. I am not one to give up or surrender though and this is a ‘paused for now’ not a ‘I give up’.
I am also working hard to make sure I am fully rested at night by getting settled in bed, taking my CBD oil at the right times and not waking too early in the mornings. Trying to feel fully rested when you have fatigue is almost impossible, but I am doing everything I can and at the end of the day when I am tucked up in bed is there really more that I can ask of myself?
So since the beginning of the year I have had the same goal, daily yoga and housework…and every week I fall short!
I feel sometimes like my goals are far off in the distance and I am stood in molasses trying to pull and struggle towards them. I am stubborn, though I set myself goals that I think are manageable I can feel overwhelming frustration and anger at my body and the illnesses that stop me being able to achieve them!
I can at times get snappy with my husband, though I know he is only trying to help me I can feel that frustration bubble to the surface and I can say things in a way that will inevitably lead to an argument and me feeling dreadful.
I have found that learning mindfulness, which is a big part of Buddhism, has really helped me to deal with this faster than I used to. There was a time when I would snap and we would end up not even talking and me feeling like a victim. However, when you have your attention in the present moment, not in the past going over what has happened in past relationships or what was said months ago, but in this moment everything is different. I have realised that I am being snappy and exactly why so much faster, and I stop, I take a breath and I apologise!
Being in this moment takes you from the depressed mind of the past, or the anxious mind of the future and helps you to be in this moment. When I started learning and putting it into practice I started to wonder how much of my life I had missed it is a sobering thought…but I am off topic…
Learning to meditate along with mindfulness has helped me so much this year, I have started every week with the goal of housework and yoga daily. Now, if you do not have chronic illness, this might seem a small goal but to me it is dedicating a lot of my precious spoons, or energy to 2 tasks! However, I used to be able to do this and I felt good in myself, I felt like I was looking after myself and the house and it felt good and I want that again.
Now I remember years ago hearing a saying, ‘if the racing driver sets his sights on the wall he will hit the wall’, to me this means if I set my sights on the goal I want to achieve I will eventually get there. So right now I might be up to three days, but you can bet there will come a time when I will be able to do daily yoga and housework again!
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 last post I spoke about my recent realisation that depression has crept back into my life and how I have been inspired by a book I read and film I watched to fight it. I think this is something a lot of people get wrong, depression is a mental illness that is incredibly sneaky! You can go for councelling and read books and do the steps but it is, for people who suffer which chronic depression, a daily fight. I wake in the morning to a noisy brain, anxiety and negative thoughts that make it hard to even want to get out of bed. Every single day I have to fight through all of that to get up, get showered, to work out and just to not hide in bed!
I have had a breakdown and been on suicide watch, I have hoarded medications ‘just in case’, and through it all I have wanted more! If I had ended things there I would have not met my husband, I wouldn’t have my dog, I would have missed out on time with my friends and family, and I would have not heard they got my diagnosis wrong!
Now I am learning about alternative therapies, and I have a very different attitude to life and to me daily yoga is a big part of my mental health being good. Over the last year I had slipped to maybe once a week and that to me was a big wake up call when I realised. I knew I needed to change things, so I went to my online Yoga teacher on You Tube ‘Yoga with Adriene‘ and I chose her 30 day challenge to get me going!
This is 30days of yoga and it is a playlist of 30 videos, one a day that I am committed to finishing, however the way I look at this is a bit different to how she meant…
I have chronic illnesses and though I want to do yoga every day, if I am going out one a day, or I am going to yoga class that night there is no way I can do yoga in the morning it would kill me! So I look at it as 30 videos and I am going to finish them all in as little time as possible, so far I have done 4 videos and that has taken me 5 days because yesterday I could barely think straight enough to get out of bed! I have to be smart and look after myself, however that does not mean I am not going to do my best to do a video a day and I am really hopeful that I can complete it!
So far however what means more is how I feel, I am much more positive, I have started doing housework and eating better again, I am sleeping better and overall my pain has improved. Yoga and meditation go hand in hand for me, they are part of my beliefs as a Buddhist and I know from reading Whole Health Life, and the Connection (review HERE) that these are important to lower stress levels. I will keep you updated how I get on but please send me encouragement on twitter, Instagram, here all the places!
I was a qualified nurse before I got sick, but even I have to admit modern medicine has kind of let me down! I am constantly told I am on so much pain relief they do not know what to give me if it gets worse. On top of that I was not diagnosed with anything for five years, and then ten years after that I was told I didn’t have Multiple Sclerosis and it was Fibromyalgia instead!
So I have been looking into alternative therapies this year and to be honest it is…well overwhelming! It is almost impossible to know where to start and there is so much information out there it is almost impossible to know where to begin and what is genuine!
Thankfully I have yoga, that has been my exercise for years now and though I still use it as my exercise I also use it for symptom management. I found bedtime yoga can help my muscles relax and my head to calm ready for bed. I have found routines for headaches, for muscle cramps, and it opened up a world of treating my body my moving it instead of resting all the time to try and treat myself.
On top of this I have meditation, I am still learning how to do it alone, but Yoga Nidra and guided meditation on you tube are brilliant. They are just lying and listening while focusing on breath and it helps my mind to let go and my body to relax. If you have not tried meditating you are really missing out on something that can really help.
However, then I got a little lost and for a few months I did not know where to turn, the internet is a great resource but also a little overwhelming! So I went on Etsy and looked up Fibromyalgia wondering if there was anything people were selling could help and I found THIS
It is a massage oil that has lots of herbs and essential oils in it and you just rub it in where it hurts…it is amazing! I used it on my arms and the pain and cramping just melted away! I really felt relaxed and it smelt so wonderful I just cannot say enough about it. On top of that I got the balm which helps with joint pain which I get a lot in my hands and it is so soothing and really nice to use. If you have fibro I would certainly recommend them!
Lastly CBD oil it is cannibis without the illegal drug bit! I thought it was illegal here, but it turns out that it was made legal in January here in the UK and so when I saw a sign for it in my local health food shop I rushed in there! I chose the lowest dose and I just use it under my tongue at night to help with my pain and insomnia. I am spending much less time napping since I started it and I also found my anxiety has lessened by using it!
The question I pose now though is where do I go from here? I know I want to save for a diffuser, but what alternative therapies do you use? Are there any must have oils or books that would help me? Please comment me links to books, purchases and articles as well as any advice you might have?
So on the 16th of this month it is my birthday, and as I thought about the things I wanted out of the year ahead the main one was to look after myself better and to be kinder to myself. These are both things that I struggle with, I think most people do but I want to talk about how we all need to change this!
So when I was at school I had problems with eating, I often skipped meals or did not eat at all, this continued into my university years and I got very thin…the thinner I got the more compliments I got and so the cycle begins!
Now I am older of course and I can look back and see how society is constantly telling us that we are not enough. Even models and actresses get teased by magazines if they have a bit of cellulite and they have personal trainers and their perfectly calculated meals delivered to them! So it is no wonder that we struggle with dieting and wanting to fit into that dress or look good naked, but I am taking a stand!
It is incredibly hard when you have chronic pain and fatigue to work out, to get out, to do the things society says is normal. It is impossible to look like society wants when you have a wheelchair, or a walking stick, or you need incontinence pads, or you have bandages etc! I often find it hard to feel like myself because I walk with a limp, and I use walking aids, and it is impossible to feel sexy when you have a flare and cannot work out at all so you put some weight on!
I am currently a size 12, I was this size when I met Lee and it seems to be the size that my body is the happiest at. I would like to tone my body more, which will happen with my yoga and by just being patient and working on keeping up with exercise. I think practising yoga has taught me a lot mainly that I need to be patient, it is not about being perfect or getting the pose now. It is about appreciating the journey and loving yourself and your body enough to work within it’s limits to learn and to grow.
This month I want to focus on my mental health, last year I lost my Grandad and it spiralled me out of yoga daily and going out with the dog and eating right into a very bad depression. Starting this blog was a way for me to get out of myself and to become a better person by not sitting stewing in my thoughts all the time. I want to love myself, I never have and I desperately want to look in the mirror and not see a thousand flaws, to be with people and be fun and not someone who puts them self down! I want to feel sexy, and think people are checking me out not just staring at my walking stick or wheelchair wondering what is wrong with me!
I found recently I have been struggling to eat right to plan yummy meals that will keep me and my husband healthy and I want to get back to that. I also want to bake again I miss that, and I want to be the best person I can be Buddhism and yoga have set me on this path and I want to continue down it.
So instead of worrying what you look like, or putting people down, or skipping meals or dieting let’s enjoy life again! The press and TV and film have changed the way we see ourselves and not for the better. I am going to be posting daily on my instagram something I love about myself…maybe you could join me? Let’s start a revolution!