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10 Things I Don't Do as Someone With a Chronic Illness

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When you live with chronic illness, it can feel wrong to put yourself first. It can feel uncomfortable or even make you feel guilty. There can be implicit pressure from friends, family or even yourself to do certain things that aren’t the best for your needs.

However, our health is one of the most important aspects of our lives, so prioritizing what we need is vital. Living with a chronic illness, I’ve come to realize that what I don’t do is often as important for my health as what I choose to do. Saying no to particular activities can actually be really beneficial — even if it’s not a complete no. Sometimes, you just need to adjust an activity a little so that it works better for you and your health. As I talk about below, I can still exercise, just at a different time of day, and of course I eat delicious food, just certain foods and not others.

It’s harder to say no when it has to be a “total no.” That takes some getting used to, and I sometimes still find it really difficult. My position on this now, though, is to always prioritize my health. That simply means I don’t do certain things. So, here are 10 things I don’t do with chronic illness:

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 has been my diet. Instead of eating whatever takes my fancy whenever I want to, 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, or even much recognition of the need for this kind of diet.

2. I don’t wear certain fabrics or materials.

Like many people who live with a chronic illness, the skin on certain areas of my body is super sensitive. My facial skin, cheeks and chin are the worst and 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. So I don’t wear whatever I like anymore, which does feel as though it has taken my identity away a little.

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

Having a chronic illness may mean you’re “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 has been used. My senses are heightened to any kind of potential trigger that could spell danger, and heat is one of my worst triggers.

4. I don’t keep quiet.

Expanding on my previous “I don’t,” I don’t keep quiet if there is a potential trigger. I will ask for a window to be opened, the air conditioner to be turned up or down, or 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 have been thanked by other patients. I find 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 conditioner. Keeping quiet can cause me problems. With politeness and a big smile, I ask for the changes I need to help me get through the day.

5. I don’t forget to take my medications and supplements, ever.

Medications are the most important treatment for many of my chronic illnesses, with lifestyle changes coming in at a close second. 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 my “pots to go” that help keep me organized.

6. I don’t exercise at any time of the day.

Exercise can be a challenge for people with chronic conditions for many reasons, and there are certain factors that make it tricky to workout with my conditions in particular. As someone with postural orthostatic tachycardia syndrome (POTS) 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, and do the same in the afternoon when it’s winter. If there is a heat-wave 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 9 a.m., so I’ve learned my lesson.

7. I don’t fail to listen to my body.

Listening to your body is one of the most important things you can do when you live with a chronic illness. Over time, I’ve learned to “read” my body for signs of increased fatigue, dizziness and pain. When I’m aware of how my body is doing, I’m more likely to know when 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 really help me. Ignoring my body can cause a flare-up of symptoms, so I try and listen to what it’s telling me.

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

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

9. I don’t avoid 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, etc. We all have a list of things we could be doing. Being on the go all the time was, in fact, doing me no favors at all. My fatigue got worse, which then made 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 I also prioritize 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. I know it makes me feel better to have some downtime, and my body thanks me for it too!

10. I don’t feel guilty for resting (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!

What’s something you don’t do because of your condition? Let us know in the comments below.

Follow this journey on Through the Fibro Fog.

Getty image via Anna Ismagilova

Originally published: February 26, 2019
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