When I was a child I loved Sesame Street, and at the moment I cannot stop thinking that F is for Fatigue would definitely be one of my words of the day. It feels so overwhelming and I am struggling to think straight but I am trying not to let it steal my joy.
Fatigue is so much more than just feeling tired, its a heavy, overwhelming feeling that makes everything, including your thoughts feel like you are swimming in molases. The thick, dense liquid means that moving your limbs feels impossible and your thoughts appear to move slowly through your mind. I am forgetting things, dropping things, losing track of my thoughts and conversations, all I want to do is nap and yet the thought of missing out on my life because I am asleep is infuriating.
I keep getting caught lost in a transe, my brain struggling to process where I am and what is happening outside of the buzzing of my head and pain of my limbs. I recently spoke about how this last flare has been the worst in a long time, the problem is I have nobody to go to for help and I feel like the medical profession has again let me down.
We don’t have specialists who keep us on the books, or anyone we can call on when our illnesses get worse, and at the moment seeing a GP is almost impossible. You cannot go in to speak to a receptionist anymore, even if I can go out for food or to the shops, and days spent trying to get through on the phone is so frustrating.
My shoulder keeps popping out of joint, so right now I am wearing a shoulder brace and a hand brace to try and help the nerve pain I am experiencing from it. My husband called to try and get me in with my GP but they said all they can offer is a phone call with the physiotherapist on the 10th! I don’t know how a phone call will help my arm, but right now I am just hoping having it like this for so long won’t leave long term damage as it’s my dominant arm!
To be honest, as F is for Fatigue, I don’t have the brainpower to deal with my arm, or worry about physios, or worrying about GPs…so it is all left to my husband. He is a wonderful carer and I am so lucky to have him in my life, I honestly don’t know what I would do without him. I am looking after mom the best I can but there isn’t really anyone else I can ask to help even if I couldn’t…I am sure I am not the only carer in this situation.
So I am going to be typically British and try my best to not think about it all, sit down have a nice cup of tea and wait for it all to blow over. So, instead I will tell you how I am doing my best to keep my chin up while my fatigue is trying to steal my joy.
Staying happy when F is for Fatigue
- Cosy clothing – I love this time of year but the thing I love most is getting cosy in big jumper and cardigans, it makes everything so lovely feeling. Staying warm is really important with chronic illness, so why not make it fashion?
- Furry cuddles – I have two dogs, Dexter and Gizmo, one you can snuggle and love on the other is a rescue who doesn’t like to be held due to PTSD. However, both of them love to have a fuss and have been spoiling me with cuddles because somehow they always know when I am struggling. Having a pet can help with pain so if you have a furry pal why not try giving them a cuddle it will at least make you smile!
- Have faith – It doesn’t matter what you believe in but having faith is so important to getting through hardships in life, so pray, meditate, bang a gong whatever you do keep doing it. My faith is so central to my life and something that definitely helps me navigate my illnesses when they flare.
- Pace yourself – Slow down, yes you have a list of a million things to do, and yes you want to get them out the way but slowing down is what you need right now. So do a job, but break it up into smaller chunks, and rest between each this will allow you to get the list done without making your fatigue worse!
- Yoga Nidra – Now before you roll your eyes, this is not physical exercise! Yoga nidra is a type of meditation you do lying down, say in bed and they can be for anything from sleeping to chronic fatigue. I did a lovely one today for fatigue that helped me to relax and oh goodness it was lovely!
- Watch some TV – I often use these high fatigue times to binge watch TV shows, at the moment it is Criminal Minds and Once upon a time two of my favourites. The best thing is to go to shows you have seen before, that way if you fall asleep you will know what’s going on when you wake up again!
I really hope F is for Fatigue is not high in your life right now, but if it is, I hope these tips help you to navigate it with a smile.