on-going mostly unedited stream of thoughts

the isolating experience of my migraines

Migraines are a strange illness. People who have not had it before think it is “just a headache”. If you can move around and accomplish more than half of your usual activities, that is probably not a migraine. My migraines incapacitate me: I get extremely nauseous, any slight movement will trigger cascading waves of pain, so I am likely to be bedridden until it decides to be over. On average, my migraine lasts 3 days, and thereafter it takes me more days if not weeks to recover. It is common to have post-migraine depression, not just because of the despondency that is caused by suffering through an episode, but the brain is physically depressed. There are significant changes in the brains of people who suffer from chronic migraines, such as lesions

I have written a few times here that sometimes out of a month I get one good week. I don’t know if it sounds like a joke because it really isn’t. Migraines are a leading cause of disability, second in both genders, first in young women. I was so relieved when I learnt about this statistic, because I can finally stop thinking of myself as useless. I am simply disabled, and I am not the only one. 

I plan my entire life around my migraines. I live a monastic-like existence with strict sleeping hours, strict-ish diet (as much as I can manage), careful planning of activities so I don’t accidentally exhaust myself, strict exercise routines, strict supplementation of vitamins and minerals. There is almost no room for negotiation because any slip-up may mean an unwanted relapse. I am almost resigned to the migraines that come with my monthly menstrual cycle, but I don’t wish to have more. 

When one suffers a chronic illness like this and has to live like that, we start being unable to relate to most people with normal, typical lives. I was constantly asked to loosen up with my sleep or diet requirements when I used to hang out more with people. People think I am being too militant, but they don’t know I have already spent years being in denial refusing to submit to such a lifestyle and have paid the consequences for it. 

Migraines are like such an invisible disease: there are no obvious bio-markers for it – we can’t go and get any test to prove we have migraines, so people tend to assume they are psychosomatic or we’re making a bigger deal then necessary out of it. It is not like diabetes where you can whip out a test result and tell people: hey stop asking me to eat more sugar because it may cause my legs to be amputated. I tell people I have migraines and hope they believe me, and not assume I am a hypochondriac. 

Since I can’t lead a normal life, I don’t feel like I can have normal relationships with people, or even with myself. I can lead a fairly okay life with quite a bit of function if I adhere to my strict regime. It takes a lot of work for me to have “normal” days. Something as innocuous as eating and being able to digest food is precious to me. 

It is a fairly isolating experience, or at least it has led me to feel isolated. I have to become a recluse when my attacks happen because I am mostly bedridden or getting over a post-migraine fatigue, so when I am able to interact with people I am already in a relatively healthy state. What they experience is a fairly healthy, normal me. But the reality is for long periods over the past few years, the fairly healthy me is only 25% of my existence, if I am being generous. 75% of the time I am just trying to survive. The person who is trying to survive is almost a different version of me. So to me, people interact with a version of me who hardly exists, which is not their fault of course. It is just what it is. People are busy with their own challenges in their own lives, so I get that it is unfair of me to ask of them to relate to my 75% invisible self, so I don’t. A few years ago I started to interact less with people overall because I got tired of explaining myself when I cannot be available, also there is a widening gap between the topics we can relate to, since I am all about optimising my health and simply trying to live, whereas most other people still have dreams and ambitions to pursue, because they can.

Of course I have to admit I like the dreamless, ambitionless version of me now. Yet to be honest I can really never know if this is because I have to. I don’t have access to a version of me where I never got ill. My present self believes I am a lot happier now, because I am no longer addicted to work or validation. But who knows? Maybe the healthy version of me would have figured out a way to find a harmonious balance. See that’s the thing. I cannot know, there is no choice for me to know. 

Very few people would understand what it is like to lose so much of yourself, to have so much of your life cut off. I am still grateful of what I have gained in return, I can also say if not for my migraines I would still be rushing headlessly into busyness without questioning if that is what I had wanted, but maybe it would be nice to have an actual, realisable choice. 

I am a very different person from whom I used to be. It has been difficult for most relationships because they are searching for someone who is no no longer there. There are some rare ones who have made the transition with me, though not without conflict and difficulty as they have to accept the loss of my old self like I had. I too, search for my old self still sometimes. I wonder if my insistence on working on this website is my only way of hanging on to a piece of my past self.

It has been almost 7 years of trial and error, of denial, bargaining, grief and acceptance. I am doing a lot better now than I used to. Maybe during good months I am 75% healthy. But I am irrevocably changed, and I know I can never return to whom I was. A friend innocuously commented that they wished I could be the designer I was, and it triggered so much anger in me. I know it is not their fault and they mean well, but it is also not my fault to feel this anger. Apart from feeling like salt is rubbed into my wound, I also feel that people tend to impose their values on me all the time. They want me to fulfil a certain image of me they have in their head. I guess I used to do the same to other people too. 

I keep my social interactions to the minimum now. I am not at a place where I want to deal with people’s conscious or unconscious expectations of me. Since I expend so much energy caring for myself just to remain sane, I don’t have much emotional bandwidth left for other people, other than my partner and my family. I know they say on average people live longer with an active social life, but I feel better with less.

I have been reading “Writing down the bones“, and it encourages us to write about the very details of our lives:

Our lives are at once ordinary and mythical. We live and die, age beautifully or full of wrinkles. We wake in the morning, buy yellow cheese, and hope we have enough money to pay for it. At the same instant we have these magnificent hearts that pump through all sorrow and all winters we are alive on the earth. We are important and our lives are important, magnificent really, and their details are worthy to be recorded. This is how writers must think, this is how we must sit down with pen in hand. We were here; we are human beings; this is how we lived. Let it be known, the earth passed before us. Our details are important.

So here they are – my details. Maybe I am projecting, maybe everything written on this page is biased, but this is my true internal experience, even if heavily coloured by my illness. I can only be as honest as the awareness I am capable of cultivating. 

I know of people who are in worse situations than me with no hope of improvement or recovery, but I guess this is not a suffering competition. I want to feel free documenting my own experience on my own website. 

This is also why I remain extra sympathetic towards sufferers of long covid, and why I remain extra careful in avoiding getting infected. I come across stories of people killing themselves because they can’t deal with their symptoms anymore, and I can relate to that because once upon a time when my symptoms were relentless, I too wondered what is the point of living with so much pain and no quality of life.

I feel extra sensitive when people are callous with their health, just like how I used to be. If I knew what I know now I would not have abused my body the way I did, sleeping strange hours, drinking copious amounts of coffee everyday, eating everything in my sight. Maybe if my younger self met my current self she would think I’m being a hypochondriac too. We can only know what we know.

I am emotionally healthier now, compared to the person who was physically healthy. I think having to prioritise my health cuts out the unnecessary, and forces me to enforce boundaries. I am much better at letting go, because there is one thing I wish to hold on to. But it all comes at a price – a price I am willing to pay, but still thoroughly felt and grieved upon.

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