How to manage having too much to do (with chronic pain)

The differences between chronic and acute illness

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.

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If we’re not happy, we have to change things

Meeting Ed Miliband

As some of you may know I met Ed Miliband last week. He came into my workplace (which was entirely unexpected) and I got the opportunity to ask him some questions about what the Labour party’s plans were for people with chronic illnesses.

He seems like a nice man, and he was engaging and polite, but the opportunity to talk to one of the UK’s top politicians got me thinking more broadly. I started to dwell on the individual responsbility that each of us have to encourage those in power to help us.

I’ve personally lost count of the number of people who want their healthcare increased, or want some improvement in how they see their GP or specialist, want shorter waiting times, or more regular support for their illness but also want someone else to sort this out for them.

I’ve talked in the past about how the main way I’ve managed my pain using self care and pain management, well I think we should use the same principles to change how we want our illnesses to be managed and perceived by wider society.

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The importance of keeping a pain diary

My endometriosis pain in December 2014.

The New Year is a great time to get into the habit of keeping a pain diary.

It’s sometimes very hard to talk about pain, and people don’t always want to listen. However pain diaries are great because they make your pain very visible to people that have no idea how much pain you’re in. Since we have invisible chronic illnesses any way you can make your pain more prominent to others is a good thing.

It’s not just an box ticking exercise for your doctor. Pain diaries are a huge part of the reason I am able to manage with pain. I log the pain, and then I can relax and move on.

Plus I’m convinced the only reason I got my third laparoscopy this year because I was able to show my (year long) pain diary to my consultant. He saw how progressed and extensive my pain was and agreed to operate on me. No ifs no buts.

Pain diaries don’t take ages to put together, and once you get into the habit you’ll realise the benefits. The biggest of which is your own self compiled evidence on your pain experience that is very hard for others to deny.

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How to learn a new language while you have a long term illness

I am now several several years into living with long term illness. I’ve come to accept it’s presence in my life, but this has come at the cost of losing a little bit of my independence and freedom. I tried not to be afraid of the pain, but it’s clear that it has affected my ability to live as normal a life as I once did.

My pain started to manifest itself in different ways, I grew more tired, and less able to concentrate and retain things in my short term memory.

As a result I became less sure of my ability to learn new things, I didn’t think I could do something new and complex, because the pain would get in the way, and tiredness would make it hard to focus, and how could I fit it around illness and inactivity and an already busy life.

An then I thought are those actually obstacles for my learning, or am I actually coming up with excuses for why I don’t get on with it? Haven’t I always had excuses for not trying something new? Was illness just a bigger, newer excuse?

So I started reading about learning Japanese, and before I knew it was I was starting to read and write Japanese, I surpassed my own expectations, because instead of wondering why I couldn’t do something, I looked harder at what I could still do.

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The importance of support groups for managing chronic illness

I have the immense pleasure of being a member of two support groups. One for chronic fatigue and the other is run by Endometriosis UK specifically for sufferers, family members and friends of people with endometriosis.

I look forward to my monthly meetings with both groups, as it’s one of the few places where I can drop the pretence about living with illness, pain and side effects, and just relax and be myself.

There is a real pleasure with being in the same room as people who understand you, and the very best support groups settings, don’t just provide you with a place to vent, but they are a source of valuable, personal knowledge that your doctor just won’t be able to cover. Of all the things I have used to help me manage endometriosis, support groups ,pain management, and the Expert Patient Programme have been the most useful tools.

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How to travel with a chronic illness

When you’re ill all the time, the prospect of taking a holiday seems like a ridiculous idea. It’s another example of how living with a chronic illness can make our lives seem like the polar opposite of most people. A holiday is a no brainer for most, but to us the idea of a holiday is a awful lot of work. We start the mental list of worries and questions before we can picture the nice time we’ll have. That’s only natural.

Healthy people will take a holiday to escape and unwind, there’s no escaping that something simple like taking a holiday isn’t so simple for us. Illness makes us afraid to try new things, because we’re scared of the repercussions. We start to worry about the likely pain while we’re there, what the payback will be, now we’ll manage in a foreign country. We push it back to next month, next year “when we’re feeling better” and before we know it several years have gone by.

During our worst pain, a holiday is on the long list of things that fall to the side, while we simply wrangle to manage our lives day to day. It’s all very counter productive as the very reasons most people go on holiday are of course great for us too.

When you are ready to travel, I’ve got some advice to share with you.

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Getting help with endometriosis through the Expert Patients Programme

I’ve come to find my own path when it comes to self-managing my chronic illness. However that’s not to say there’s not anymore to learn once you’ve started to accept and work with your illness. It’s also not easy for everyone to find acceptance alone, as this depends entirely on you and the severity of your endometriosis and your willingness to be open to ideas. It’s particularly hard if you’ve been newly diagnosed or you’ve struggled for many years and don’t see a way out.

I’m happy to say there’s always more you can do to improve your quality of life. So with that in mind I signed up for my local Expert Patients Programme.

If there’s one in your area, and you’ve not already tried it to help manage your endometriosis. I’d highly recommend that you do the same.

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How knitting helps me with my chronic pain and fatigue

Around the time I started cycling to help my endometriosis. I realised that in order for cycling to work I also needed a low energy activity to use for the days or moments where I couldn’t cycle, something to balance out the immense amount of energy I used in my first few months of cycling.

Something that would help me stay awake, but also keep pain away and fight off my disabling tiredness in the evenings.

So now I am a keen knitter. Knitting is perfect to help you manage with chronic pain and fatigue, and here’s why.

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Getting ready for the winter

I dislike the cold a great deal. For me the gradual decline into winter means more discomfort, more pain and less time spent outdoors. These are all things that make an already tricky life with chronic illness that much harder to manage with.

So rather than languishing in my upcoming winter blues, I thought I’d spend the end of the Summer and the beginning of Autumn by coming up with ways to combat what I really hate about the colder months.

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How I self manage my endometriosis pain

Sometime after my surgical treatment for endometriosis I could literally feel like some around me were were thinking:

Right that’s it now. That’s you sorted. Back to normal right?

Unsettled, I went back to the doctor for what seemed like the hundredth time that year and got their opinion, and got the same sort of feedback.

It felt like I’d gotten a bit of a brush off from my health professionals, despite asking for more help and asking what more I could do.

That’s fine for some I suppose, my quality of life was better, but I didn’t really feel like I’d improved enough to stand alone with chronic pain for the rest of my life. Not just yet anyway.

Little did I know at the time, but being forced to figure how how to live with chronic pain on my own would be the making of me.

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

Twitter

  • Someone gave me one of these today to help with pain. It's really helpful. https://t.co/Vm0TYLPhfx 7 hours ago
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  • RT @BBCWomansHour: 📻Now: Do you look healthy but have pain from a 'hidden' illness? A new badge to wear on public transport may help https:… 1 day ago