On any given day I always have too much to do. There are more things to accomplish than I have hours of the day.
This was a problem for me before I got sick, but well people aren’t always forgiving about illness, but doubly so when they want work from you or expect you to meet certain commitments. People get stressed themselves and their expectations and demands grow. Basically people forget you’re ill and expect you to do as much as everyone else.
Being busy with a chronic illness is a nightmare. You have half (or less than) the energy of other people. You’re in pain all the time and you have to manage everything that life requires.
There’s no perfect solution to being busy and stressed, but the being busy while ill part? I might be able to help a little.
Case in point: This update. I’ve been trying to write it for about a month. It’s not a lack of desire more I haven’t had the time to have the clear hour or so it would take me to finish it. When we’re stressed and busy other peoples needs seem to come before our own strangely enough. I’ve been fighting to write this but other people’s less-important crap has had to come before my website. 😦
For me when I’m short on time work creeps into my free time, or it tries to. The first thing piece of advice I want to give you is making sure you have a good work/life balance. Taking the time you finish work as an example. When I leave and cycle home, work is dead to me. I don’t check my emails, I don’t do any extra hours that I haven’t agreed to previously. It’s harder if you work for yourself but it’s key that you try and switch your mind off to what else you should have finished during your working hours.
Which brings me to my next piece of advice.
Write things down and discard from your memory
If I find myself thinking about work or other difficult tasks when I am on my free time. To avoid spiralling into worry I create reminders for myself for the next day. I write down the thought that’s bothering me when I think of it, set a time and date for it and forget about it.
Strangely being proactive with pain actually means re-finding your inner procrastinator. You’ll see the happiest people with chronic pain are the people that have developed their own strategies for managing their emotions and workload day to day in a way that suits their personality and their circumstances, and this is how I manage mine.
Procrastinating a little is crucial for managing work with chronic pain. You’ll also have heard this described as pacing, an extremely important tool for managing pain. You try to do big tasks in smaller stages rather than all at once.
Of course that means at some point in the week you’ll need to get around to doing the work you listed for yourself previously. we’ll come to that later.
I’ve talked about how I manage the pain that endometriosis causes previously, so I’d like spend a bit of time talking about how I manage the difficult days, when it’s really hard to stay positive, motivated and happy.
How I manage
When I feel sad and stressed, it’s so much harder to manage with pain, so most of my advice involves preventing myself from returning to negative thoughts, by staying focused and motivated.
Largely it’s pretty simple, but it boils down to:
- Keeping busy
- Taking things a day at a time so I don’t overwhelm myself with things to do
- Talking about my problems
- Keeping a pain diary
- Keeping a wellbeing diary (full of nice things that you’ve enjoyed doing)
- Making sure I pace my days and use pain management techniques
- Not comparing my experience to others – realising it’s okay for me to find things difficult that other people may not do
- Finding things that keep me motivated in my free time such as cycling, knitting and learning Japanese
- Sharing my difficult experiences to help change things for others
- Properly organising your time and energy
It’s a good idea to pace your days so that you don’t do too much. This is pretty subjective for most people but on the whole I try not to do too much on any given day. Only one high energy difficult task per day. If an average day is a scale. I’m always taking off weight from one side of the scale to keep it more balanced. A little procrastination can be a good thing when you’re in pain. Sometimes things really can be left until tomorrow.
I have a pretty rigorous to do list for each day which limits how much I do. When I start to feel worse I pass these things onto the next day or the next week. This removes some of the pressure to cram everything into one day. Cramming activities is something you really need to limit doing when you’re in pain all the time.
When you overdo things, you tend to put more stress on yourself and it won’t take long for things to become difficult and overwhelming.
When the time goes to do a huge task I break it up into smaller pieces, I delegate bits to others, I delegate some stuff to myself for other days or other hours. I fit my work around how I am feeling and how much I can realistically manage. Once I’ve done this the pain becomes more manageable, and you’ll create a virtuous circle where your productivity manages your pain instead of stress causing it.
Learn how to say no
The day I felt better with managing my pain better was the day I learnt to push back and say no to people more often. Before I got ill I was the sort of person that tried to everything, but now I push back on things that I’m not up to doing or don’t want to do. Use your (precious) well time wisely and don’t feel pressured into doing too much for others.
Most people will understand that you can’t do something when you give a reason, a long term illness is a pretty good reason. If you’re worried about people challenging your decision, most people will back down when you say it’s because of long term pain. If they don’t, they’re pretty inconsiderate and probably a bit sheltered.
That’s one of the few positives about chronic illness that I am grateful for, that it’s made me selfish – in a good way – I put myself first far more than I used to. I feel able to express myself more confidently and not sweat the small stuff. Well time is so precious to me now, and I no longer have to put up with doing things I don’t want or don’t enjoy.
I’ve got some tips here for how to ask for help from others while maintaining your independence.
As mental health awareness has grown in the past few years I’ve noticed that there seems to be a sentiment from some people that think that people with physical illnesses have an advantage over those with mental health issues (because of access to care). This isn’t really the case, we actually share a lot of the same problems as people with mental health issues.
Here’s a table from one of my chronic illness books to explain what I mean.
In my experience there’s also a high crossover with people with long term physical health problems developing mental health problems. They really go hand in hand, both are chronic, invisible illnesses that have a lot of the same side effects, including feelings of low self worth, paranoia, guilt and anger.
We all know there’s a real difficulty with getting the long term care we need for illnesses that are with us for the rest of our lives.
For us with physical illnesses, sometimes our mental health needs are hidden because we’re working so hard on our physical health we neglect our minds as it’s such an effort to manage the pain. Maintaining your mental health may actually help with the pain symptoms though, sometimes all you need is the smallest foothold on the pain to manage it more expertly.
Acceptance makes things easier
This is the most difficult part of feeling better about yourself. Coming to terms with a long term illness makes things a whole lot easier. It’s the first step advised in the toolkit of self managing pain and it’s also the most difficult.
When you understand that pain is a new part of your normal, and it’s something you have to learn to adapt to rather than rally against then your reduce the amount of pressure on yourself to keep things as they were before you got ill. You can start to reevaluate your life into what’s important (and keeps your happy) and what and who you don’t like in your life (and what can go).
You don’t have to like your illness, you certainly don’t have to agree with it’s presence, but if you accept that it will continue to be there (and do this on your terms and in your own time) then your present and future will be a lot easier. This can take years, and some of you may not be there yet, or you may never get there. In which case what’s most important is that you are doing your best, and no one can argue with that.
Find something to look forward to each day
It sounds really simple, but this is the most powerful tool that I use to manage when times are trying and difficult. If I’m struggling on a particular day, or finding things hard I try to give myself a reason to keep going. This is particularly useful for non-negotiable tasks like going to work.
I enjoy my job, but there are days where I am exhausted and would rather rest than work. So I normally think about what I am going to do with my free time when I get home.
Sometimes the thing that’s keeping you going is really easy to think about and takes no time at all. Sometimes it’s real struggle to think of anything – especially when you feel really bad or in a lot of pain. In my experience there’s always somewhere you’d rather be than in the moment of pain, so visualise it and actually do it when you get your chance. It should be something tangible and doable rather than something out of reach (like dreaming about being pain-free).
When this happens, I try to focus on something that’s worth fighting the pain for. It can be whatever you want, something really trivial or stupid. Something that’s months away or something that will happen that evening. What’s important is that it’s a thought powerful enough to keep you going.
Be honest with this focus. If it’s going to bed or resting at home, that’s fine. It’s okay to think of something that gives you comfort, what’s important is that the thought of it gives you the energy to get through the day ahead.
Asking for more support at work
If you have a long term illness you may have the right to ask your employer four some reasonable adjustments to help you with pain and other symptoms. I’ve successfully received adjustments at my workplace and if you’re struggling to come with with ideas I’ll share some of my ideas in another post.
When things become really, really difficult
I do have really bad days. They tend to creep up on me suddenly, like an unwanted guest. I’ll feel relatively upbeat about how my week is going then something will happen to introduce self-doubt and before I know it I’m in the vicious circle of feeling isolated and worthless. I withdraw inside myself and give my pain free reign in my head.
With long term illness it feels like our bodies are in fight or flight mode. We expend so much energy just on living normally and thinking twice as much as other people. We’re processing pain alongside everything else we do, mitigating pain, avoiding it, deciding what to do and what not to do.
It’s exhausting and as a result it’s perfectly reasonable to feel like you can’t manage from time to time. I wouldn’t beat yourself up if bad times last longer than you want them to, this is why it’s easier to avoid negative thinking than it is to stop it.
The number one thing I remind myself when I feel like this is that I’ve felt like this hundreds of times before, and I’ve always found a way through it. This thought calms me, as difficult emotions have a habit of making things seem faster, stronger and much more painful than they might be.
I’ve made a list of my most common negative thoughts here and how I try to counteract them.
Seek our free, local sources of help
The best thing you can do right away is seek out a professional service that can give you some customised advice on your circumstances. I really rate the Expert Patient Programme which has courses worldwide. It’s the UK it’s a free six-week course available on the NHS that teaches you how to manage not just your long term physical illness, but all the difficult emotions that come from that too.
Surround yourself with good people
Sometimes the hardest enemy to overcome with our pain is ourselves. It’s really hard to stay focused and positive when you feel completely alone with your pain. That’s why it’s really important to surround yourself with the right people. People that understand you and your pain, that understand your limitations and know how to help you before you need to ask.
These are the people that I rarely feel guilty about being sick around. My parents, my partner. my best friend and my other friends with endometriosis and other illnesses. People like this are tremendously rare, so it’s okay if you haven’t found anyone to help you with this yet. I’d suggest that chronic illness support groups and social media is a good place to start trying to find someone to help you with your pain experience and the best bit is you’ll help them in turn.
You’ll also come to know the people that are extremely negative about nearly everything (even though pain is horrible). I try to limit my time with people like this because you cannot always persuade them to change their minds. You’ll want to help but truthfully there is only so long you can listen to this approach before it will start to effect you physically and emotionally. Other people can be exhausting and it’s okay to not be around others sometimes.
Talk to people, or share thoughts somewhere
Sharing what you’re going through is really important. It’s going to stop you from burying your emotion and “volcanoing” later.
If you don’t feel able to share your thoughts with anyone, I recommend trying an online diary such as a seperate, private twitter account, private blog or app (I use day one if you’re looking for specific examples).
Jotting your experiences down somewhere, if you can’t talk to someone will really help with the sensation of feeling isolated and overwhelmed. When I write things down they can often give me a new perspective on the trouble I am having in that moment. It might help me think of a solution to a problem that I haven’t considered yet.
This is why talking to other people is so helpful as well because others can help you spot something really obvious that you can’t see and it can often be done more quickly by another. It’s harder to do on your own but it’s not impossible. The important thing is to make a start on sharing your difficult thoughts somewhere or with someone.
Talking to others can take confidence to do, so it’s okay if you don’t feel ready to do this. It’s completely up to you and your comfort level.
I finally made it
I’ve used the advice above to manage through some of the most stressful weeks of my professional career. I’m not through the worst of it yet but – yes – I finally found the time to finish this post. 🙂