I wanted to write a detailed post about how I deal with the everyday struggles of having chronic illness. Chronic simply means long term, so it is not written in stone that you will have it “forever”. Which is good news. But to somehow cure yourself from it, is another story. And to be understood by others, is also sometimes difficult. I wanted to write about that, too.
First some background story:
When the body first started to show symptoms of serious illness, I was 18. Crippling headaches, infections, eye problems and stomach problems. At the autumn of 2010, I got mononucleosis and, in hindsight, I don’t think I completely recovered from it. Mono is caused by the Epstein-Barr virus (EBV), which I probably still have in my body, causing all sorts of problems. Then in 2011, it got much worse and I ended up in the hospital for one week – doing tests (i.e lumbar puncture) and being examined by a neurologist. My main symptoms was my poor concentration/brain fog, headache and blurry vision. He saw “nothing” wrong with me, except for the headache, so I got the migraine diagnosis and very strong migraine medication – which did not work!
I lost some weight in that one week, and being a skinny person already, I did not look very good. And I felt worse. I pushed on for another year, before the body said completely stop. There was nothing left, no energy. I had to quit my job and other strenuous activities. I was in the doctor’s office so many times, I think I saw him more often than my friends, and finally he referred me to a specialized team at the hospital who gave me the much stigmatized ME diagnosis. In the following months I could not physically do anything else than rest, go to the toilet and eat. The stomach was not working, my head felt like one big ball of cotton, all my joints hurt, my arms and legs was too heavy to move and the fatigue…oh lord 😛 Not to mention being very scared and frustrated on top of it all.
This went on for many years, with very small improvements. Some periods better than others where I could go to café or out on small walks, but overall still very limited. Today, when I look back, there is a really big difference, though. But it has happened so slowly that it’s hard to notice unless I look back and compare. I feel like I have done most of the work myself – as all ill people need to no matter what illness they have – but I have met good helpers along the way as well. A good private doctor in Trondheim, my amazing physiotherapist who I see every week and also in 2016 I met my yoga teacher and the Open Heart dharma sangha, and the yogic practice is of big help.
Last autumn I was able to go for a mountain hike and I have also been trying out work (6 hours a week in a second-hand shop). This turned out to be too much right now, but it was great to try and to get out some! Now I currently am unemployed and am just focusing on my health, art and practice.
Left: On the bad days I feel like the illness shows somewhat, both in the eyes and the skin in terms of fatigue and paleness. Right: While on the good, or ‘less bad’, days I look better, and it also shows in the eyes. It does bother me that this illness is so crippling, yet so invisible, and so there can be a lot of stigma and misunderstanding when it comes to both family, friends and health carers. The feeling of not being believed or told that “it’s all in your head” despite many studies showing otherwise is like a kick in the face every time. Imagine not being able to walk too far without getting dizzy, faitgued, nauseous, fever-ish and pain, and then someone says: just push trought it or think positive. It’s also hard for people to understand that you can do much one day, but that you will have to “pay” for it later (in the following days – or weeks depending on the severity of the illness). It is a difficult illness to understand, so I don’t blame people, but be careful what you say or suggest, it could sound more harmful than you intended 🙂
Here is a list over things I continually do throughout the day to manage the symptoms:
1. Eat enough, at least 3 meals a day. I stick to a low sugar, dairy -and gluten free diet. I also supplement with smoothies (see picture).
2. Drink enough water. “Enough” meaning whenever I am thirsty (when the body wants it)
3. Take supplements (in cooperation with a doctor) based on blood samples. The brand I use is called Solaray.
4. Yoga. More specifically meditation (tantric). I used to do more physical yoga, but now it’s more sitting and chanting.
5. Compassion practice – as I call it. Working with prayers and intentions for everyone who experience illness with the help of Bhaisajyaguru (aka the medicine buddha).
6. Pace! The most important thing. Do things (i.e housework) in small portions, and not push myself to do more than the body can handle. Sometimes this ‘rule’ has to be broken because some things needs to be done, but I try as best as I can to pace.
7. Sleep when/if I have the opportunity in the afternoon.
8. Listen to some audio book to get some mental stimulation if there is not too much brain fog, when reading is too strenuous.
9. Drink 1-2 cups of green tea mixed with orange juice (which is a super energy drink) 70% green tea, 30% juice.
10. Paint, if I am in a creative mode. This gives me so much joy and it’s very important to have some hobby like this, I think.
11. Talk to people and not be afraid to ask for help (do grocery shopping etc.)
12. Listen to guided relaxation (yoga nidra) when I feel wired and tired.
Here is a list of things I do during a week in order to make life easier:
1. Make big portions of dinner one day that I put in boxes and freeze so that I have meals for several days to come. Making and preparing food can be very draining. And not to mention the dishes 😛
2. Write a diary over things I need to do, and make sure not to put too much things on one day. Pacing on a big scale!
3. See friends – this is something I like to spend energy on, so I try to fit it in often. I felt very isolated when the illness was at its worst, and I realized how important it is to get up and out, so now that I have the opportunity to do so, I do it gladly.
4. Sleep, relax and pace a lot if I know I have a big event coming up (i.e vacation, wedding, birthday party etc.)
Thanks for reading. If you have some good tips on how to pace better or other energy saving hacks, please let me know!