Tired of your long-term health condition?
Fed up of waiting for your next appointment? Tired of feeling ill? Adapting to a long-term illness/ condition can be hellish.
Here are twelve simple things that you can do that can help you deal with the ‘every day’ of your long-term illness.
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1. Know yourself — This may sound kind of silly, but knowing your limits and what triggers your pain or fatigue can be a huge step in managing your day to day life with a long-term condition. You can plan your days better to avoid doing anything too strenuous or anything that might set your symptoms off.
2. That said. Find an effective way to track your symptoms that works for you. Whether this is an app where you can track your symptoms in digital or graphic form or a journal where you jot down your notes. Not only will this help you keep track of things but it will also be useful for your doctor when trying to work out the next steps that you might take. I am still trialling a few apps but ladies if you are looking for a good menstrual cycle tracking app, I could not recommend Clue more (https://www.helloclue.com/).
3. Don’t beat yourself up. When you are ill all the time it is only natural to get frustrated with not being able to do certain things that you might have not been able to do in the past. You feel like you are missing out on SO much and you may not even be able to see the friends you used to but the worst thing that you can is to give yourself a hard for it! You are dealing with so much right now you do not need that voice in your head telling you that you could do better, or that you are not good enough. In fact tell that voice to shut the hell up.
4. Practice some self- care and treat yourself. From my own experience, I have found that the world of a long-term illness is the world of small steps. But so often we forget to see how far we have come. Even small steps like making it out to the shops, or calling a friend when we are feeling awful, these are all triumphs so make sure you reward yourself with hot baths, chocolate and time set aside for doing things you enjoy!! Living with a long-term condition means that often you miss out on activities that you would have done to have fun such as social activities with friends or other activities such as exercise, which are good for de-stressing. You might have to find different ways of doing these things when you might be at home all the time, but make sure you do set aside that quality time.
5. Don’t forget the small things. When you are feeling like s**t it is easy to forget all the things you used to love doing. And I know that you might be thinking right now “But I physically can’t !” and there will be things that you can’t do right now due to how you are feeling. But what I also realised is that as well as the bigger things like not going out as much and not being able to see my friends I was also cutting out the smaller things I found enjoyable too. Little by little I stopped cooking, I stopped listening to music (something that would shock my past housemates) and I stopped spending quality time with my family- all things that brought me so much happiness. Even though we may not be able to do all the things we used to, don’t forget all the small things too! They really can make a much bigger difference than you realise.
6. Pain management is a pain. All my medic friends are always banging on about managing my pain and after months of their nagging I have finally have to admit that (of course) they are right. Staying on top of your pain/fatigue is essential. I take pain medications to manage the pain but also I now make sure I take them in advance when I know the pain is going to get worse. Making sure I am taking the right dosage that will help me the most and discussing my pain management with my GP have all been key for me. This might sound ultra simple, but for someone who is not keen to take tablets, and wants to try and power on through, this has been somewhat of a learning curve. This also links with learning to stop myself doing too much so that my pain doesn’t get worse and so I can manage the rest of the week!
7. Alternative strategies. Until I got into this cycle of chronic pain and illness I had never really tried many alternative therapies. But I cannot tell you how much some different approaches have helped me manage my conditions. Acupuncture has helped me massively with migraines, back, neck and joint pain. In the past I also started to take up Pilates, which had a dramatic effect on some of the back and head pain I had been suffering from. Pilates is designed to improve physical strength and works on specific muscles using gentle stretching. I have tried meditation really useful for calming myself down on days where my illness seems overwhelming. I have used the headspace app (and really enjoy their blog too) but you can easily do this yourself without an app and there are some good youtube videos out there!
8. Learn to be honest with your friends. The ones that really love you will always be there for you. Quite honestly being ill has been one of the loneliest experiences of my life but I have been incredibly lucky to have some really great friends that have been at the end of the phone for me and have checked up on me. When you are feeling ill, the last thing that you may feel like doing is ringing up a friend. After all, what can you tell them…. you are in pain, you are feeling awful and quite frankly you don’t know what to do next. You may not be able to work and you may not feel like you have much to tell them. But don’t forget these are your friends, and if they are good ones they do care and will be there for you. Sometimes until you tell them exactly what you are going through they may have no idea of how the illness is affecting your life.
And no matter what you will always have other things to talk about. With some of my friends I have started writing again, for some reason receiving and letters still seems so exciting. If your friends live near you, they will often be more than happy to come visit you so you don’t have to make the trip out of your house. Or meet for coffee instead of evening drinks. Although it may often be hard to explain how you feel ( especially if you ‘look well’ on the outside) … which brings me to…
9. Learn the best way to explain how you are feeling. Some of the most dreaded questions I get asked is ‘How are you?” or “But you don’t look sick?” I have found the spoon theory an amazing way to explain how I felt to some friends and family.
And coming up with a stock phrase to respond to the “how are you” question” is always a winner… you don’t necessarily have to go into the ins and outs of your illness or definitely you don’t have to explain or justify yourself but you might just want to let someone know that things aren’t the best right now.
10. Don’t feel bad if you have to cancel plans and don’t be afraid of saying no to things you can’t do. But don’t stop your whole life either. One of the hardest things I have found about dealing with a long-term illness is that I cannot plan very many things for the future. Whether professionally, socially or just day to day stuff. When a friend invites me to something I almost get a sinking feeling in my stomach because I have no idea how to respond. How will I be feeling that day? Is it most likely that I won’t be feeling well? Or sometimes I feel like because I will most likely be feeling well that I will be a burden on everyone else there. But now I have reached a point of focusing on small achievements, small goals and reminding myself that these are important too.
11. Don’t obsess about what all your friends are doing. Living in an instantaneous social media world can be the worst especially when you are suffering from a long-term illness. It can feel like everyone is getting on with their lives, everyone is achieving so much and everyone is having so much fun. Remember that this is a false view of the world and that social media only shows the good happy side to people’s lives. From my social media accounts no one would have a clue that I was ill. We only let people see what they want them to see. You will get there, in the end. The good times will come again. This too will pass.
12. Remember you are not alone. Unfortunately, there are so many people out there suffering from an invisible illness. It is likely that someone near us actually is likely to be suffering from one. A friend of a friend .. a friend of the family…. One of the best things that helped me to cope was meeting someone who understand how I felt, someone who had been through the same things and understands the frustrations of the whole situation. Look for support groups, look for Internet forums. Often in your local area there will be a support service to help people manage their health conditions that may or may not be linked to the NHS. Blurt is an amazing website looking at depression, but I have also found it useful and relevant for some of my other health issues, but there are tonnes of others out there. Speak to your closest friends. Don’t give up hope.
Wishing you all the love and support wherever you are. Keep going xxx
