10 Things I Don't Do as a Person with Chronic Illness

When you live with chronic illness it can feel wrong to put yourself first, or to go against the ‘status quo’ in terms of activities that you do or, more often, choose not to do. Putting yourself first can feel uncomfortable, or even make you feel guilty to begin with.

However, your health is one of the most important aspects of your life, so prioritising what you need can be vital to the management of your chronic illness and feeling the best that you can.

As I have learnt to live with chronic illness I have come to realise that what I don’t do is often as important to my health as the things I choose to do. Saying no to particular activities can actually be really beneficial and aid the management of your condition(s). Many times, you may not even have to say a complete NO, you just need to adjust an activity a little so that it works better for you and your health.

The harder part of saying no is when it has to be a total no. That takes some getting used to, and you may find it really difficult. My position on this now is to prioritise my health. I want the management of my health conditions to be the best it can, and to feel the best I can, and that simply means that I don’t do certain things that may compromise this.

So here are 10 things I don’t do with chronic illness that help my conditions and improve my symptoms and broader lifestyle. Let me know what you don’t do in the comments below!

Jump to:

• 1: I don’t eat whatever I like
• 2: I don’t exercise outside my limits or at any time of the day
• 3: I don’t keep quiet if I need something
• 4: I don’t wear whatever I like
• 5: I don’t walk into a room without noticing how hot or cold it is
• 6: I don’t forget to take my medications and supplements, ever
• 7: I don’t fail to listen to my body
• 8: I don’t let myself stay in stressful situations
• 9: I don’t prevent myself from doing activities that are relaxing and restful
• 10: I don’t feel guilty about having a lie-in, or taking rest (most of the time!)
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1: I don’t eat whatever I like

One of the major changes to my lifestyle since being diagnosed with migraine, and mast cell activation syndrome is the change to my diet. Instead of eating whatever takes my fancy, I now have to follow a low histamine diet. This means that many common foods such as tomatoes, spinach, beans, hard cheeses and more, cannot be part of my diet anymore.

Eating a low histamine diet is tough, especially when eating out. There aren’t many recipe books with low histamine recipes, although the SIGHI 'Mast cell-friendly and low histamine cooking' book is an exception, or even much recognition of the need for this kind of diet.

It is for that reason that I have tried to include information on the low histamine lifestyle and low histamine recipes on my blog. Hopefully one day there will be more understanding that some people can’t eat high histamine foods and more provision will be made in cafes and restaurants.

2: I don’t exercise outside my limits or at any time of the day

Exercise can be a challenge for people with chronic conditions, and there are certain factors that make it tricky to workout. When I was virtually house-bound due to vestibular migraine, POTS and fibromyalgia the idea of exercise was a distant pipe-dream.

Over time though, I saw a specialist physiotherapist who highly recommended that I begin by using a pedal exerciser at home. It was such a great idea, and it was so good to get my legs moving in a safe way while at home. It's low impact and you can just sit on your sofa or chair and listen to a podcast or watch TV while pedalling - perfect!

Then I gradually started to walk more, and add in resistance workouts as well. But I have to do this within my limits. You will never find me at a high-intensity class for example . . .

As someone with postural orthostatic tachycardia syndrome and mast cell activation syndrome, I have been advised not to exercise when it is too hot or too cold. To get around this I walk / run as early in the morning as my body will allow in the summer to avoid the heat, and in the afternoon when it is at its warmest in the winter.

If it is a heatwave or particularly cold spell then I stick to indoor yoga or resistance work instead. Last summer I got a bit faint a few times when it was really hot, even at 9am, and so I’ve learned my lesson not to exercise when the temperature means it isn’t a good idea.

3: I don’t keep quiet if I need something

Following on from the previous ‘I don’t’, I don’t keep quiet if there is a potential trigger that may cause me an issue. So I will ask for a window to be opened, the air-con to be turned up or down or a perfume not to be sprayed. A number of times I have slyly switched off a radiator in a boiling hot waiting room at a hospital. I have also opened windows in the same setting and been thanked by other patients who don’t wish to do it themselves.

I find that as long as you ask politely, most people are accommodating. Some even make comments that it is indeed hot and they are happy to put on the air-con, and they wish they had already done it.

Keeping quiet may cause me problems, pain at the least, potentially more at its worst. With politeness and a big smile then, I will ask for changes to be made to help me get through the day.

4: I don’t wear whatever I like

As with many people who live with chronic illness, my skin on certain areas of my body is super sensitive. My facial skin, cheeks and chin are the worst and they flush and burn when my mast cells are angry about something or other. My upper chest can also be problematic, and for some reason my knees as well. Goodness knows why those places!

So clothes are picked as much for comfort as style, perhaps even more so. I can’t tolerate any rough fabrics or anything that traps air in a particular way, namely fleece-type fabrics. I can get a rash pretty instantly with those. Soft cotton is usually my best option.

5: I don’t walk into a room without noticing how hot or cold it is

Having chronic illness may mean that you are ‘on guard’ for potential triggers. I hadn’t really thought about this until my GP (general practitioner) commented that I always ask for the window to be opened if it is too hot, or notice the smell of certain drugs if he has been using them.

Well, I have also been called a ‘bloodhound’ by my sister who says I instantly know if perfume has been sprayed or any kind of chemical used. My senses are heightened to any kind of potential trigger that could spell danger, and heat is one of my worst triggers.

6: I don’t forget to take my medications and supplements, ever

Medications are the forefront of my treatment for many of my chronic illnesses, with lifestyle changes coming a close second. Currently I take anti-histamines and mast cell stabilisers, as well as the supplement quercetin.

Typically I ‘count out’ my tablets on a Sunday night and put them in a small pot for each day of the next week. That way I don’t have to worry about forgetting whether I have taken a tablet or not. They are all there in the Sistema pots to go that I find very useful for keeping my medications organised - yes, they are salad dressing pots - but they work great as pill boxes and can be easily carried around in a handbag!

I also make sure I take my supplements. Personally, I find quercetin very helpful for my mast cell issues, as well as gentle iron for fatigue, magnesium to help with migraine, as well as vitamin C and a really excellent vitamin D spray that has finally got my levels back to normal.

Plus, as someone who needs to keep their salt intake up due to having postural orthostatic tachycardia syndrome, I make sure to liberally sprinkle my favourite pink Himalayan salt on my food. This is a great option as it doesn't taste as 'salty' as regular table salt. I even put it on my porridge in the morning!

7: I don’t fail to listen to my body

Listening to your body is one of the mainstays of looking after your body and health if you have chronic illness in my opinion. Over time I have learnt to ‘read’ my body for signs of increased fatigue, dizziness and pain.

When that happens I know that it is more likely that a migraine is on its way, so I can begin my migraine action plan. I try and get more rest, and do activities that are more relaxing and will calm my body down.

Personally I find reading novels, watching a good TV show or film and doing gentle stretches to be really beneficial. Ignoring my body tends to end up in a flare-up of symptoms, so I try and listen to what it is telling me to head one of these off before it begins.

I have also learnt to listen to my body in terms of adapting my lifestyle to ease or, hopefully, lessen my symptoms. As well as physiotherapy, exercising when I can and taking supplements, I have found it really useful to arm myself with as much information as I can on lifestyle adaptations.

Unfortunately, doctors aren't always great at giving this kind of advice, so I look at various websites and books, which are full of helpful tips and tricks for managing chronic illness through avoiding triggers and implementing dietary and other changes.

8: I don’t let myself stay in stressful situations

Stress is definitely a trigger for me for many of my chronic conditions. Research has shown that prolonged stress is problematic for our health, and it is a trigger for many conditions such as migraine and fibromyalgia.

So avoiding unnecessary stress is really important for anyone with a chronic illness or health condition. Of course, this is easier said than done, and health issues are stressful themselves.

What I have done is to remove myself from stressful situations, and lessen my contact with people (even friends) that cause me to feel negative or stressed. This might sound harsh, but it just means that I have more time to spend with friends and family that are supportive and make me laugh – which is great for my health!

9: I don’t prevent myself from doing activities that are relaxing and restful

Rest used to make me feel stressed! Not the desired outcome I know . . . I used to feel guilty if I watched a TV show in the middle of the day, or curled up on the couch and read a novel. My mind was thinking about work, chores that needed to be done, personal admin etc. We all have a list of things that we could be doing.

Being on the go all the time was, in fact, doing me no favours at all. My fatigue got worse, which then had a knock-on effect of making my other symptoms worse. It was a vicious cycle that I needed to break.

So while I’m still a fidget and love to be busy, I try to make sure that I also prioritise restful activities. It can be as simple as sitting in the garden in the summer, or having a cup of coffee while flicking through a magazine.

10: I don’t feel guilty about having a lie-in, or taking rest (most of the time!)

Truth be told I am not a lie-in kind of person. I just don’t stay asleep, mostly because my irritated bladder won’t let me – the joys of having interstitial cystitis! But if I do sleep in, then I let myself do so (within limits). I don’t set an alarm unless I have to be somewhere at a particular time, so if my body needs it, then I can sleep.

More and more research shows the benefits of sleep on our health and yet we often feel guilty about doing it. It’s a silly thing really. After all, it makes us feel better the next day and I know that lack of sleep can be a trigger for my migraines. So I don’t feel guilty about having a lie-in, I only wish my body would do it a bit more often!

Please follow the advice of your doctor as to all medical treatments, supplements, and dietary choices, as set out in my disclaimer. I am not a medical professional, and this is simply my story and the resources that are helpful to me.