I feel like I want to scream.
I'm doubting myself, doubting the diagnosis I've been given of CFS – even though every time I look at the symptoms or read about someone else's struggle with it I think yeah that's me.
I am tired pretty much all of the time – though tired isn't really an adequate word. Exhaustion is nearer, but still not adequate. I can sleep 8-10 hours in a night and not feel refreshed in the morning.
When I'm feeling really 'tired' I get night sweats, I feel achy and my limbs feel heavy, I get sensitive to the light and to sounds around me. My brain slows down and I struggle to understand what people are saying to me, it's hard to concentrate. I struggle to think what to say if I'm around people and I can lose words part way through a sentence or forget what I'm saying altogether. I can also get very ratty as it can feel like my senses are being assaulted from all sides. I don't know what to do with myself at these times. What do you do when everything around you feels like it's needling your brain? Well I try and find a quiet corner and sit and concentrate on my breathing. And if I can't do that then I struggle through the thick, sludgy fog that seems to have taken over my brain until I can. When I do find a quiet corner I can be there for some time (sometimes hours) until I feel that I can again cope with a little input (maybe listen to a podcast or watch TV).
It's not always like that though, I do have better days. Not complete overwhelming exhaustion – just bog standard everyday tiredness (at least for me).
A 'normal' day for me at the moment consists of trying to conserve some energy so I don't 'crash' and end up like the above for hours or days. So I'll spend a lot of time resting during the day. And by resting I mean meditating as everything else takes energy. Though sometimes I'll get away with watching something light on TV or listening to a light-hearted podcast as 'rest'.
A year and a bit on from the diagnosis being confirmed by a CFS specialist I'm still feeling a bit like I won the booby prize. I do at least have some people taking me seriously and that's progress from being told by doctor's so many times that 'everyone is tired'. But it would be so much easier if it was something else. Something that didn't feel like an easy out for the doctors – cheaper than more tests. Something that had a definitive test. Something that the medical profession knows anything about would be good. Something that gets more than £1 of funding per person diagnosed with it. If it was a condition the doctors or CFS 'experts' could actually give me good advice for. If someone could tell me how to get better, or at least advise me on how not to get worse.
I'd also love for people to be able to understand what I go through. Though I'm not surprised that people don't.
Firstly; Chronic Fatigue Syndrome is such a misleading and inadequate name.
Secondly; Chronic Fatigue Syndrome or ME covers so many symptoms and there's such a wide range of people that have it. According to the ME Association there are degrees of 'disability' you get with CFS/ME and this ranges from being able to work but struggling to keep up with hobbies and socialising, to being bed ridden.
Thirdly; I've become an expert at hiding any issues I've had over my life whether it's to do with energy or anxiety – my default is to pretend to be 'normal'. I want to fit in and I don't want to bore people with my issues constantly.
Fourth (and finally); even I don't understand a lot of the time. It's a varying condition and sometimes I'm able to do a lot more than I think I can. It can surprise me at times how well I do cope with some things. I am also surprised by times when I think I'll cope ok and it leads to a crash and feeling absolutely awful. It's confusing to try and figure out what I have the energy for and what I don't.
The only advice that they can give me is to pace myself. Pacing involves trying to make sure that you rest before you've used all your energy up. It's trying to figure out what you can do – and then reducing it a little so you don't wear yourself out. It's counter-intuitive to everything I've been taught growing up and it's frustrating as hell to me right now. I want to just throw myself into all the things that I'm excited to do. I have so many interests and projects I want to do that I just want to dive into them head first. But I've found out that if I do that then I end up paying for it. And at the moment I feel I may be being too cautious at times. But at least I'm not crashing. It's a hard balance to get. And no one can advise me on exactly how to do it as it's different for everyone.
Basically the advice from medical professionals right now is 'we don't know how this is going to go for you, how long it will last or what will make you better, you have to figure this out yourself by trial and error'
Pacing also involves trying to balance using different energy types and is split into mental, physical and social. If I do too much that uses mental energy (i.e. watching TV, reading, listening to podcasts, using the computer, thinking or planning) then I do get exhausted. Planning in some physical activity and rest does seem to help a little. Though I often start to get tired after just 15 minutes of a physical activity like washing up, chopping veg etc. Social activity is also important but this is hard at the moment. I am at home with my parents for most of the week and it's a bit isolating. I am also finding it hard to see many people as by the time I've travelled to see them I have already used some of my energy and often have limited reserves left to socialise.
I have had some limited times recently where I've felt energised and stayed out longer and really been able to enjoy being around people. It's been glorious, but I have the constant worry that I will pay for it later. This doesn't always happen. Sometimes I'm lucky and I don't get the payback. It's always in the back of my head though. And when I do manage to have a good time and not end up paying for it I feel guilty and the self-doubt starts to creep in again. 'Is this real?' 'Why am I not feeling worse than this?' 'Why was I allowed to do it this time?' 'Am I better now?' 'Am I getting better?' 'Was I ever ill?' 'Is it just delayed payback?'
And I think back to all the times I did crash. And wonder if there are new parameters now and if so what the hell they are...
It could be that nothing has changed and I just had a bit more energy that particular day or week and if I tried it again I would crash. I'm living in hope that I can try and do a little more, but if I get it wrong and push just a little too far I could end up worse again or even back at step one. Here's hoping I'm actually one step closer to recovery, and that the next step I take doesn't end up with me slip sliding two steps back.
If you'd like to learn more about ME/ CFS the following organisations could help:
ME Association - https://www.meassociation.org.uk
Action for ME - https://www.actionforme.org.uk/
So I've been vegan since January now (I know still a noob!). Well, maybe it was a bit after January as we were using up things like Quorn mince (has eggs in it) and egg noodles etc as it seemed rather silly to throw good food away!
My transition was made easier by the fact I'd been (mostly) pescatarian for a few months first, and was already using plant based milks. Though it was still a bit of a challenge/ learning curve to start off with as with any change in life. Mainly because when I was eating pescatarian I'd started to eat a lot more eggs and cheese! However, it is a lot easier to be vegan now than it used to be. I've learned there are so many products out there as well as the fruit, veggies and beans. You can get supermarket own brand soy mince to do your bolognese or chilli, no bull burgers from Iceland are really meat like (which is great if that's what you want), some Quorn products are being made vegan and a lot of vegetarian sausages are vegan. There are even some really good vegan 'cheeses' (Gary) out there. Violife do some lovely ones, and the Tesco Jalapeño cheddar is lovely!
There's also plenty ready meals, crisps, chocolate, ice cream, sweets and all sorts of other goodies too at the main supermarkets – many of which are 'accidentally vegan'. Oh, and tofu is amazing once you know what to do with it! (Marinade it!!) Most supermarkets are extending their vegan ranges as more people are cutting down on meat and veganism is on the rise. Restaurants and cafes are also introducing more vegan items onto their menus with some of them having whole vegan menus. The choice is growing and growing!!
I've had some amazing meals and found new food items I would have never tried before – as well as having a ton of houmous and falafel, which thankfully I love! One of my favs is the ginger-sesame marinaded tofu (kebabs below) from the Thug Kitchen book. It's sooooo good! I've also had vegan brownies in Manchester that were the best brownies I've ever had! As with any diet there are some delicious foods and some that are just average. It's all down to what you choose to eat from the many choices.
I have had some 'slip-ups' – sometimes accidentally - like only just realising a lot of naan bread has milk in it! Sometimes because I was exhausted and it would have taken more energy to find a vegan alternative, so I had the veggie one. Sometimes just because I felt I needed to lighten up, because if I didn't I might 'fall off the wagon' altogether. Drunk me is also much more likely to cave in and have that biscuit!! (Mainly because a lot of places don't have an alternative!) I've often felt guilty for these 'slip-ups'. Though I've tried to be kind to myself at these times. I try to remember the mindful self-compassion training I've had. To try and talk to myself as I would a friend. I have CFS and the fatigue can make it difficult to make decisions, and to make sure I'm eating well at times. I'm doing the best I can but sometimes it's difficult and that's ok.
I've been struggling. And despite everything I still find that hard to admit. Maybe it's the perfectionist in me wanting everything to be 'just so' – even my recovery. I want so much for my narrative to be 'strived to get over Anxiety Disorder and won' that admitting that I'm struggling with my health again seems like a failure. Even though 'recovery' is rarely straightforward. And it's an entirely different health problem.
I want so much for my life to be 'normal', to be able to do everything that other people can do. To be able to do everything that I want to do. I want it so much that it feels like I've been pretending that I can do it. Pushing through and ignoring the warning signals from my body. Continuing despite increasing amounts of headaches, IBS flare-ups, achiness throughout my body, dizziness, light sensitivity, nausea, brain fog and just sheer exhaustion.
Until my body had enough.
I got a virus about a month and a half ago and I've been a different level of exhausted since then. I think it was 'just' a cold, but it seems to be painfully slow getting my energy reserves back.
The doctor diagnosed a Chronic Fatigue Syndrome flare up caused by a viral infection and I've been signed off work.
In the first few weeks there were days when I couldn't concentrate on anything much. I managed to feed myself (thank god for tinned food and freezer food), but getting showered and dressed took too much energy. There were a few days where I just sat and concentrated on my breathing for large chunks of the day so I would have enough energy to watch TV for a bit. That wasn't every day as I did watch reruns on Netflix for large chunks of some days – as reruns are easy viewing and take less mental energy. I even wrote a couple of blog posts during that time. But they took about half an hour to do, and I had to rest afterwards. I could shower and dress some days, but it took a lot out of me and I had to rest afterwards. I remember one day I tried doing some crochet and after about 10-15 minutes I felt so exhausted I could barely keep my eyes open.
I felt isolated. I was stuck in the house, mainly on my own as my parents have been away a lot. I started to feel like a complete failure. As if the progress that I'd made in recovering from my anxiety issues meant nothing because here I was stuck in the house again. I was so frustrated I wanted to scream out. It didn't feel fair. I just want to live a normal life – why me?
I was so thankful for my friends during this time. A few kept in touch daily, or a few times a week and they kept me sane! I had to keep reminding myself that I wasn't in the same position I have been in the past. I am not isolated as I have friends (and family) that care about me. But it's hard to keep yourself positive sometimes when you feel exhausted and can't concentrate on doing a great deal.
To keep myself sane (and try to recover) I've been concentrating more on my mindfulness practice and especially self-compassion practices. I've also been using heat packs on my poor achy shoulders and neck and doing the physio exercises I've been given more regularly. The random aching in my legs seems to be linked to the fatigue – so not much I can do about that apart from rest! And I've been trying to get as much nutrition as I can.
Self-care and compassion are so important and we often don't do these essential things until our body and/or mind demand them.
This has all felt like such a shock to the system. But looking back now I can see that it's been coming for while.
I was struggling to keep up with my self-care because I was so exhausted from work. Every day at work took it out of me. There were a lot of weeks where I was so exhausted from working 3 days that I couldn't do much on the other 4 days of the week. I had to cancel a lot of my social activities due to exhaustion. There were some months where I did more social things – and I really enjoyed them – but they took it out of me. I was generally so tired the next month I was cancelling everything again.
And every time I cancel something I feel like I'm letting someone down. I feel like if I keep going this way people will stop inviting me out!
I have been struggling since before my GP diagnosed me with CFS around a year ago. I've just been trying to carry on because I couldn't admit that working 3 days a week was killing me. I felt like a failure.
But one thing that this flare up has given me is a lot of time to reflect. I wouldn't think of anyone else as a failure for not being well enough to work. So why do I think that of myself?
Why do we always blame ourselves and berate ourselves for things out of our control?...
Is it because our society is so focused on achievements and competition? We should always be moving forwards, achieving more, doing more... And when we're not it feels like there's something wrong with us.
I personally feel like that's part of it. I worry what others think of me. I don't want to be seen as lazy, unsociable, unmotivated, work shy, a hypochondriac or whatever other stereotypes there are in society for those who are struggling. I would hope no-one would think that little of me. But ultimately I can't control what others think.
Having time to reflect and meditate on self-compassion I have come to realise I have a lot to be proud of.
I have come a long way since I first realised I had an anxiety disorder.
I've overcome social anxieties, gained a lot of confidence in myself and my abilities & overcome fears of travelling on public transport. I've gone from someone who had no friends, was fearful of leaving the house, had panic attacks getting the bus to the local town, thought no one would like me, had massive anxiety going out in social situations, had panic attacks making meals or going to a supermarket and never thought I would be able to work again. To someone who is comfortable on public transport, can travel across the country (or to other countries), feels comfortable socialising with all sorts of different people and loves meeting new people, loves taking on new challenges, has not only gained confidence in various voluntary positions but has been in paid work for over a year and a half.
I now feel like I am faced with a different challenge. And I will face this too. It turns out a lot of the coping strategies I learned with my anxiety are transferable and the meditation and mindfulness is also an important part of my recovery for this. It feels like my lifeline. And I'm grabbing onto it with both hands!
I want to recover. I want to be independent. I have ambitions I want to achieve. I have so much I want to do in life.
I am going to start by taking care of myself. I am slowly recovering already. I had an afternoon out the other day (I was out of the house for about 6 hours!) and although I was tired out the day after it felt like a massive thing for me as I couldn't have done that two weeks ago. The most I'd managed before this was a few hours out of the house for a meal with friends or a theatre outing. And a couple of these outings took a lot out of me and led to exhaustion. I can see things slowly getting better so I must be doing something right!
For now I will continue to try and pace myself. To have a daily mix of mental activity, low impact physical activity and rest (meditation). It's been a massive eye opener to me that everything I was doing to rest previously involved some element of mental activity (watch TV, crochet, colouring in, reading) and that I almost never had 'full' rest. Full rest meaning either doing nothing at all or meditating/ focusing on breathing (not sleeping as this can affect the quality of sleep during the night).
Hopefully I'll continue to slowly improve and be able to do a little more each day or each week. I'll certainly be making sure I look after myself as I don't want to be in the position where I can't do anything again!!
A couple of months ago I was introduced to the delights of Blipfoto. For those who don't know it's a website & app on which you can keep a daily journal including one photo per day (unless you subscribe then you can add some extra images).
I initially found it really amazing – and addictive! The idea of taking a photo a day to share on the online journal really did help me to become more aware of my surroundings! I was exploring my local area at work during lunch times. I noticed little things – like a leaf on the train station steps that had a pretty pattern, tiny caterpillars on some plants in the garden, statues I'd never noticed before (in areas of Manchester I've frequently been to).
It helped me to become more mindful of my surroundings, aided me in connecting more with my mindfulness practice. I also felt my love of photography returning as I fished out my macro lens attachment for my phone and started experimenting with that!
There is also such a lovely little community on there – some really friendly blippers who follow your journey (and whose you can follow too). It feels like a much healthier form of social media than the much more demanding Facebook or Twitter, especially as you can only have one entry a day. It's a calmer, more serene atmosphere. Not as hectic at all.
In the last couple of weeks, unfortunately I have been struggling more with my Chronic Fatigue Syndrome so I've not been able to contribute as much. It's a shame as I'd got over 50 blips (days) in a row!
But I need to make sure I look after myself and - for me - it seemed to get more time-intensive over the weeks. I found that as I created connections with other blippers, commenting on posts/ replying to comments means using the app became a little more time-consuming (and for me energy-consuming!). I am missing it though – so I think I'll be back on there more regularly when I'm feeling I've got more energy in reserves!
Maybe I just need to limit my time per day (and not feel guilty when I don't respond to people quickly!)
I'm so thankful for the connection back to my photography. And I have found that in the couple of months I've been on there I'm getting less fussy about which photographs I share with others. Perfection isn't necessary!
I've added a few of my favourite shots on here but for anyone who is interested in seeing them all with the journal entries here is my Blipfoto account: https://www.blipfoto.com/AMK81
in the garden.
the sun warms
my aching body.
ruffles my hair,
caresses my skin
I can't comprehend.
I close my eyes.
the golden sunlight
with light and love.
I feel at peace
if only for a second.
Everyone has it, but some people's shouts louder and more persistently. That voice that's constantly judging you and criticising you. My inner voice demands perfection from me – anything less and I'm a failure. If I'm tired and I eat unhealthily then “I've failed”, “I'm fat”, “I'm stupid”, “Why have I got no will power”, “I'm never going to lose weight”, “what's the point in trying”, “no one will ever love me”. It goes from bad to worse and within a matter of minutes it's gone from I've eaten a cake to no one will ever love me – extreme! But in those seconds I believe it. And sometimes I believe it for longer than a few seconds or minutes. In fact my mind loves to tell me these stories, and if I'm not careful they can take over my life and it's exhausting!
“no one likes me”
“I'm worthless, a failure”
“I'll never get my own place”
“WHAT IS WRONG WITH ME”
I've found that the only thing that keeps this voice at bay is a consistent mindfulness practice. If this practice lapses I really notice – it's the difference between having some control and being run ragged by this voice that just shouts abuse at me and has me running round in circles believing all sorts of nonsense.
I'm now training to become a mindfulness teacher. I thought this would mean I would become 'better' at my practice. Though it turns out it's given the voice a new target “how can you teach others when you can't even keep it up yourself”. It seems that the inner critic now wants perfection in my mindfulness practice and I'm not good enough if that's not achieved.
Now I know that perfection is not an achievable goal. It's setting yourself up for failure. I am good at many things – but perfect? No one is perfect.
I also know that when I do practice regularly my mind seems different – I see everything from a different perspective. Things seem calmer and more in balance. And I know that even the most experienced practitioner has lapses in their practice. Life happens. We all get tired, or have things that get in the way. It's how we deal with the challenges and with the lapses that matters.
I am only human, I make mistakes – we all do. But when I realise all I can do is admit to it, understand it and move forward with my life. I can start again. I can schedule my meditation practice. I can go back to basics and re-teach myself. And I may need to do this many times. Ultimately this teaches me a valuable lesson every time – if only that this is essential to my being. That it's not a lifestyle choice or a fad, that it's part of me. That it frees me – and makes me able to live my life without the voice shouting quite so much. And that means so much!
Hi, I'm Sleepy Knights - the exhausted creative. Thanks for visiting my blog! I'll be sharing my creative output - poetry, photography and crafts projects - insights into mindfulness training, coping strategies to deal with life and my own struggles and successes - Read the about section for more info!