Words and multimedia by Lucinda Parfett, edited by Caitlin Quinn
Like many disabled people, fatigue management has always been a part of my life. However, over the past few months it has got significantly worse after the diagnosis of a brain tumour. I found myself relying more and more on the self help techniques for fatigue management while I await support from the Brain Injury rehabilitation program. One of the many things I had to do in order to manage my fatigue was step back from Accessible Artistry last October (2020). It was a really difficult decision to make as disability advocacy is something I am very passionate about, and improving accessibility and inclusion of creative industries as well; but I knew that by taking some things off of my plate, I would be able to pick them up again when I was further along in my recovery.
The video at the top of the page explains my experience of having a brain tumour so far, from diagnosis, surgery to recovery.
Based on my own experiences of managing fatigue I wanted to create a guide of sorts for anyone who's feeling a bit stuck on what to do about their fatigue.
Pacing.
Pacing and spoon theory are two important things for the self management of fatigue. In the spoon theory (created by Christine Miserandino), you start each day with a certain number of spoons. Each task that you do costs a spoon, with high energy tasks costing more than one. If you wake up feeling fatigued or in pain you may start the day with fewer spoons. This can help us visualise the amount of energy we spend on tasks so that they can be broken down into smaller more manageable chunks.
Pacing is something that comes into spoon theory - if you are able to visualise how much 'energy' you have each day, then you are able to pace yourself to prevent your fatigue getting worse.
The hashtag #SpoonieTwitter is a good one to follow to get more tips on following spoon theory and fatigue management within the disability community.
Time to call your GP?
Pacing and the spoon theory are incredibly useful tools, but sometimes we try everything we possible can to manage our fatigue by ourselves, and it just doesn't improve. This is where speaking to a medical professional could be beneficial.
If possible try and keep in contact with your doctor or point of contact, whether that be a clinical nurse or your GP. Keeping them updated on your fatigue allows them to track it, and rule out potential causes of it to help manage fatigue.
However, I do understand that medical professionals are not always understanding when it comes to chronic long term health problems. Leaving many patients forced to advocate for themselves to receive care. Many of my disabilities are complex which often leaves GPs unsure of how to best support me - my advice in this instance is to ask your GP for a referral to a specialist who can advise on a care/support plan that local services such as occupational therapy and physio therapy, can put in place.
Another route to take is that if a medical professional says "there is nothing they can do" and they want to discharge you, ask for it in writing. Having a letter from a medical professional saying that they were unable to provide support, but that you are still in need of support/treatment is incredibly useful! It can be used in a referral to see a different medical professional, or give the next person you see a clearer picture of they type of support you've received so far.
Voice Ability can help advocate for you if you need to put in a complaint about the treatment or care you are receiving. Another service called PALS of which is based within local NHS services can help with some aspects of advocacy.
Mobility Aid
Prior to brain surgery I used a walking stick sparingly, on a 'as needed' basis. After surgery it was a very swift and shocking change. I struggled to walk, stay balanced, and had fatigue that got worse the longer I walked. Using a mobility aid every time I am walking as opposed to only when I am at my worst, helps prevent me from over exerting myself. I purchased my walking stick online as I was struggling with mobility due to my cEDS (classical Ehlers-Danlos Syndrome) and I'm currently on waiting lists to be able to get a mobility aid that's more supportive for me.
An occupational therapist or physiotherapist can assess you to see if they think a mobility aid would help you. This assessment would mean that if one is necessary, then the mobility aid will be provided free of charge and it will be the right height and support type for you.
Although, the waiting lists for these services can be very long. It is possible to purchase a mobility aid online or locally, but it is important to keep in mind that the mobility aids provided may be less specific to you and your needs if you haven't had a mobility aids assessment yet - you can also pay for these assessments through some private mobility aid providers.
Using a mobility aid isn't an answer for everyone, but if you have chronic pain or a physical disability as well as fatigue, then it is definitely something to speak to your medical team about to see if it would be right for you!
Have a look at the #BabeWithAMobilityAid hashtag to get some ideas on how the disabled community has been making their mobility aids look fashionable.
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