Chronically build your future

 The Energy Game 

I’m a few years into this life game, let's just say more than a couple of decades in, thankfully and my energy levels aren’t what they used to be. I’m what some people call a neck breather, or repository challenged, chronically breathing challenged, a trachsmith-  take your pick. When I was younger I never used to think I had a chronic illness. I always described myself as a disabled person and have been lifelong disabled, I think I have more than a few neurological and neurodiverse issues as well although, I have no official diagnosis of neurodiversity. I have ongoing mental health issues but I’ve never really seen my selfie as chronically ill or as some in the chronic illness community would define themselves as spoonies (see an explanation here https://www.thebraincharity.org.uk/whats-spoon-theory/). Young Phlegm Master used to not really get the idea but older me certainly does and my advice to any other chronics and/or disabled people who struggle with this I would say prioritise your energy, rest and relaxation, if you can. I add the last bit because some people due to work and other life pressures and responsibilities can’t. And for others, especially those with MH and other related issues, or neurodiversity family can’t. I have to force myself to relax, well I tell a lie, I work long hours and then overtime on top and I have energy crashes. And I promise myself on days off I will a, b, c, and d and then my body says, “permission denied”, “not today!, “not in my house” and other such statements. 

My Solution 

To go back to basics and take things one day at a time. I have days off when I get a lot done but I do things in chucks and bursts and I work in breaks. Non chronically ill disabled people with broken fitted energy metres inside them would call this procrastination but we have to reframe this as efficiency. I don’t quite apply spoon theory myself but it’s pretty similar thinking. 

 See my graph before - disclaimer I never said I was an award winning artist so forgive me

  

 

So for my non-work days I try to fit in periods of rest, and this doesn’t mean naps or anything, it can just be doing something relaxing such as listening to music, reading, watching a programme on a streaming app. As I said previously I’m working on the mind gremlins telling me I’m lazy but it is slowly working and is more beneficial. Otherwise burnout is real. And speaking for myself as a chronically disabled person with lifelong respiratory illness it can lead to making an already serious and potentially life threatening condition worse on a day to day level, being run down make you more prone to chest infections, which means loss of productivity and also it can affect your mental health, low moods and anxiety. Again the latter part of that statement is my own experiences. The Phelgm Master unfortunately knows a thing or two about MH problems and I do think it is an underexplored issue i.e. the potential link between respiratory illness and mental health. I tru;y believe there is a link and I don’t just think it’s the whole “feeling depressed about being disabled” label that mental health professionals have tried to explain it way several times. I personally have never felt depressed about being disabled, I wouldn;t say I’ve felt pride, I get that many others have, I just don’t feel depressed. My experiences of disability in relation to how I’ve been treated by others or issues I’ve had accessing services (on paper and in theory at least) have made me depressed.  Regardless of causation, managing mental health issues is part of the journey for many disabled people and this is something we must factor into managing or day to day lives and how we use our energy.  

It’s ok to rest

Yes you have permission to rest or at least try to. Again for myself it’s a work in progress, like relaxation. I don;t really relax unless I’m asleep and sleeping is a struggle a lot of the times. But if you get the chance to rest you must take it. Give yourself permission. Say no to guilt. That’s right, not just to drugs to guilt as well. In fact a lot of us can’t say no to drugs or we’d be dead, but I guess they’re not the drugs we’re meant to be saying no to. I digress. When I work I’m non-stop and always on the go, so it’s weird to do nothing when I;m not at paid work. But I do think for a lot of disabled people with chronic illness you have to learn to, especially as you get into your 30, 40’s and beyond because as I said earlier your body will say it for you. And that’s the thing that young Phlegm Master didn’t understand, I battled against colds and even chest infections unless they completely flawed me and went to work and partied till I dropped. But Old Phlegm Master has no such luxuries, I tell a lie I still work silly hours but the extra curricular fun is few a far between. Now my body seems to crash and when I push my body you best believe it pushes back. So my advice to anyone reading would be to listen if yours does the same.   Energy crashes are real and they’re not your friend.

Try to sleep and be a nap king

I used the word try because this is also something I struggle with. I’m a born night owl and sometimes even when I know I should go to bed I don’t. I was never really a morning person but I have turned into one out of necessity as my job requires me to be up really early and I start work before 8 am most day and days are a lot longer than a 8-4 or a 9-5. On work days I tend to have less than 5 or six hours sleep as a regular occurrence. I make it work but it’s not the ideal recipe for someone with chronic health issues but I recognise that many others with such health issues can’t work and sleeping very often isn’t a discussion because they’re body crashes. And when I’m all worked out I sleep crash, exhaustion is very often the only reason I have a lie in that and a severe chest infection or flu. But even if these aren’t the extreme circumstances than us chronics need to realise sleep is our friend. Naps are our friend. Snacks are our friend.

Snacks are our friend

Yes healthy snacks, unhealthy snacks in moderation, yes for chronic ill heathers doing things in moderation is the dream we chase. Occasionally if we have the energy reserves excess is also a dream but be kind to the body and mind and snack out if you can.     

Hobbies are your friend

Yes, hobbies are your friend too, whether that’s streaming your favourite film or tv show, listening to music, drawing, writing, painting or doing an outdoor activity, if you can get a hobby or more. Give yourself permission to enjoy something, when you can. Again I recognize for many ill health, poverty, other responsibilities, work, family may render this point flippant; but if possible do something you enjoy. It can be a solo hobby other with friends but a little bit of joy goes a long way. And we all deserve some happiness but this journey of life can be a hard slog for anyone let alone someone with a broken down body that seems constantly battling its owner. 

Friends are your Friends

I know you think this is a hashtag without the hashtag that’s gone too far. But let me explain. Having friends in your life is important but having the right friends is crucial. Especially as someone who is chronically ill, who may not make it to the night out, or the concert, the cinema or for dinner. The one who is also cancelling because of illness and/or an energy crash. It is your right to expect your friends to understand because if they are true friends and have known you any length of time then an awareness of what part your illness or disability plays in your life is not too much to expect. They don’t have to understand the ins and outs of the medical side of things but,  “I’m unwell sorry I can’t make it” really isn’t too hard to understand”. And no one chooses to miss out on all the fun. And no one consistently makes plans to cancel them. That certainly isn’t a hobby     

If you feel like your friends aren’t understanding or worse still are deliberately behaving badly towards you because they feel you are deliberately cancelling plans then perhaps you need to think about whether they are right for you. Or at the very least you need to have a conversation to discuss any misunderstandings. But if you are made to feel bad that is a red flag also good friends should try and meet you half-way i.e. maybe organise nights in or a visit to you if that is possible. It is ok to have expectations on friends to meet your needs as well after all personal relationships should be give and take. .