It’s Rare Disease Day, something we traditionally mark, with both Renata's and my own family being affected by rare conditions and all that it brings.
This year I want to talk about something that affects most people with rare diseases and/or chronic conditions - managing your energy levels.
Pacing is very hard for anyone, especially young people, with rare or chronic conditions to learn, but vital to help them live fulfilling lives. Although I’m no spring chickadee, I’m sharing my own experience as someone who lives with both a rare and chronic fatigue and pain condition, Ehlers Danlos syndrome.
EDS is an insidious condition. It’s sneaky and unpredictable. One moment you can be feeling okay. Then you get out of bed. Within moments, you can be feeling dizzy, nauseous, fatigued and wracked with pain. Sometimes you can feel those things while you’re still in bed, which as you can imagine, means you don't go very far. It's not the only condition that has these symptoms, so it affects thousands of people, young and old(er).
When you’re young, the last thing you want to think about is how to spread your energy so that you can get through the day and accomplish what you want to. Or anything, for that matter. It can be helpful to read about "Spoon Theory", basically, visualising energy in spoons. Say you start your day with 12 spoons, Showering? One spoon, Dressing? Another. Leaving the house? Two spoons. Only unlike perfectly well people, when you've spent your last spoon you can't replace it by sitting down for 10 minutes or so. And if you 'borrow' a spoon from the next day, you can't replace that either, so you're working with only nine spoons tomorrow, leaving you with less energy. And this is where the term "spoonies" for people with chronic fatigue-based conditions comes from. I am a spoonie and so are both my (adult) children.
Coming to terms with your spoons
It took me a good three years after EDS knocked me flat in 2012, to accept that this was my “new normal”. It forced to me take a long look at what, and who, was meaningful, important and beneficial to me. It was, frustratingly, at a time that SNJ was becoming more popular and lots of things I should have been doing to capitalise on it I just wasn't able to. I just had to accept it.
Frustration can become a way of life, if you let it. So can anger, sadness and bitterness. The key words here are “if you let it”. It’s hard NOT to let it at first, whatever age you are, when you realise that you can’t even walk the dog any more. Coming to terms with the handful of pain and other meds you have to swallow several times a day - and remembering to do so - is another frustration. Even now, I end up in agony because I forget a dose, which frequently happens, despite my phone alarm reminding me.
And that’s me, at my age. When you’re a child or young adult, at the very start of your life, it is undoubtedly even more daunting. I know from my youngest, who has EDS as well as ASD and ADD, that the things they want to do and the things that are possible can seem very far apart. Learning to drive would be very handy, but fatigue, memory issues and lack of coordination can make it almost impossible, even in an automatic car. We're both looking forward to self-driving cars to revolutionise our lives!
Getting to see friends who aren’t local or getting to an event such as ComicCon can be so exhausting for my youngest that they have to spend half the time sleeping to get over the travel. And as for education? Whether it's school, college or university, the cumulative effects of getting there, being there and getting back can make homework or after-hours activities feel like climbing Everest. So often, that just doesn’t happen. My youngest has been to uni for a year but is now on study leave exactly for these reasons. It sucks, big time.
The prospect of work can be just as daunting. It’s not just the work itself and the deadlines and demands, it’s the journey to and from the job that also have to be factored in. On top of that, doing it for one day means you pay for it the next - so the prospect of working a five-day week can be fairly remote. Disability benefits can in no way make up for what you miss out on.
I have had to confront my feelings of worthlessness, of being a burden and there being no point to me. These are common misconceptions for people with long-term illnesses and something that should be challenged. I have come to terms with it, more or less, through a mixture of counselling, meditation and metaphysical reading. The latter is not something you have to be my age to do - I started this path at 17, when I was lost and depressed. I continued it intermittently and my illness brought me back to it, in particular to the work of Jane Roberts and Seth and others such as Michael Newton and Robert Monroe and The Monroe Institute. If you or your young person has a fascination with the esoteric, you may want to pass these links on to them.
Managing the expectations of others
But there is a way to try to do as much as you can without suffering. It’s not easy and it can be just as frustrating, but pacing is the only way it’s possible, I have found. Ignoring my health limitations gets me into trouble, but not focusing on them really does help. As does managing the expectations of others of what you can and are unlikely to be able to do.
The first thing is disclosure. Let work or school/college/uni know that you’re living with a condition that impacts your energy levels. For example, if you have a deadline looming and something comes up health-wise that means you may not be able to meet it, be up-front. If your child is the one with the condition, speak to the school and email individual teachers with a short explanation of the condition (and a link to further info if they want to find out more), at the start of the year or after diagnosis. Explain that there will be times that your child or young person will be late with an assignment or not in at all because of their condition, but that you will liaise with school to ensure they don't miss too much, or you will support them to do it at home. Then explain about the Equalities Act 2010 and reasonable adjustments.
If your child doesn’t have an Education, Health and Care Plan, or social care support, consider the merits of securing one if it seems like the support they are getting is insufficient. Chronic health conditions DO impact a child’s ability to learn. Not just because they will need time off for appointments or through illness, but because fatigue can impact both memory and executive function. They are unlikely to be achieving their potential if they’re in pain. Some unenlightened people may say, well, that’s the best they can do as their condition isn’t going away… but that’s bollocks. With adjustments such as extra time, using a laptop or other support, it is perfectly possible for them to do well.
Making a pacing diary
This is something I learned while on the Royal National Orthopaedic Hospital hypermobility pain management course, a three-week in patient course. Start with a week’s calendar in front of you. In pencil, block out the things you have or want to do - appointments and work commitments, school days, extra-curricular things, seeing friends. See the image below as an example or download a word version here. You can edit it to suit yourself of course.
If it’s school or college, block out the specific subjects and include deadlines for any projects. If there are particular things that are going to be energy intensive, colour them in red. If there are things that are simply enjoyable and you feel better after, mark them in green. If there are things which are at neither end, mark them in orange. It's advisable of course to do with with your child if it's about them!
Then look at the week as a whole. How much is in red? If it’s a lot, it’s no wonder you/your child is exhausted by mid-week! You can and should update the chart as needed. It's also a great visual aid for helping your child understand their energy levels and you can use images instead of words. One idea is to laminate a blank version, then either use laminated visuals with blu-tak or similar on the back (or make it on magnetic paper), or draw on it with wipeable pen.
Take a closer look at the subjects if it’s school. Are there some days that they could come home early or go in late (say if there is PE that they can’t do at the end or start of the day) Or, is there somewhere that they can rest if it’s in the middle of the day? My youngest used to be able to go and lie down in the school surgery for a while, or just go and get a drink and biscuit if he felt he needed a break. The nurses (it was an independent specialist school) knew what he needed and he was comfortable going to them when needed. They would know if he needed to come home or just if a rest was enough. When in sixth form, there were days when work could be completed on the computer at home as part of their media course as long as we let the tutor know this is what was happening. The main thing is to keep people informed.
For myself, making a pacing calendar means I can see instantly if there are potentially too many energetic things close together and either move them, decline, or ensure that the following days are light. It’s now become second nature to check either side of any potential engagements to ensure there are rarely or never two heavy days in a row. If I’m over-ambitious and do book two things a day after each other, the second almost always ends up not happening because I still underestimate how exhausted I’m going to feel when I get home.
I have also learned that, although I work from home, a whole day on the computer is asking for trouble. If I work from my bed on my iPad in the morning, scheduling posts, checking stories and answering a few emails, then move downstairs to the laptop in the afternoon, I can manage my energy better. I can also schedule in half an hour late afternoon to rest or meditate before evening. I’m also lucky now to have a home help with the household chores a few days a week.
Getting support and learning to say no
As you can imagine, I get invited to quite a few events or asked to give talks. I do as much as possible but I have had to learn to say no. This can be hard when it’s something you really want to do, but for a child it can be even more so - they end up missing time with friends because of the demands of school. For myself, I rarely go out in the evenings.
There’s no doubt about it, it has severely restricted my life, at a time when my children are young adults and don’t need supervision or, as in the case of my eldest, is away at uni. I have had to make my own business from home with my social media consultancy (as SNJ doesn’t pay - because of my energy restrictions!) instead of getting a job where I travel to work.
For young people looking to start work, this can make things extremely difficult. This is where the Access To Work scheme can help with providing equipment or travel help. An employer should also be able to consider flexible working arrangements. And, of course, if a young disabled person is in training, education or an apprenticeship, they are entitled to the protection of an EHCP. Some employers are also specifically opening up traineeships or opportunities for disabled people.
Some other tips for managing energy can be as simple as taking a fleece blanket and travel pillow with you for travelling, as it's great for extra comfort in a car, train or plane. I do this for myself too. If you’re flying, always book assistance. Even if you can walk, the distance to gates can be very long and the queues through security noisy and busy. An airport wheelchair gets you and your family through faster knowing your rare or chronic disease member is saving energy for the journey ahead. We also have suitcases with four wheels that, as hubby pushes my wheelchair, I can hold the handle of the case and it wheels along happily by the side of the chair without extra strain.
So I hope this post has either helped you as an adult with a chronic illness, or helped give you some ideas as a parent, or some extra understanding if you’re school or work staff. Sometimes our children can't express exhaustion other than by sleeping or by being very cranky, so it can help to take a step back and look at how their week has been. I know for myself that by Friday, I am shattered, even with only one out-of-the-house event (even the dentist!). So happy Rare Disease Day and just don't ever book me on a Friday…
- Rare Disease Day
- Pacing Diary Word doc
- Your Rights to Equality at Work: Working Hours, Flexible Working and Time Off (pdf)
- 8 Reasons why Flexible Working for people with disabilities is good for the Employer as well as the Employee.
- Flexible working - gov.uk
- Disability discrimination & the qualities act
- access to work scheme
- What is Workplace Inclusion?
- Ten Top tips for when your child is diagnosed with a rare disease
- All our rare disease posts
- My posts about Ehlers Danlos syndrome on my Not As Advertised blog
- Add your own tips or resources in the blog comments below.
- Dear Boris, you must act now to help disabled children #LetUsLearnToo - September 8, 2021
- What schools need to know to support learners with hypermobility and Ehlers-Danlos syndrome - August 20, 2021
- Ofsted / CQC: SEND was bad before the pandemic, it’s worse now - June 17, 2021