Lessons I’ve learned from chronic illness

I have been thinking for a while now about how long it’s been since I last blogged, and how I really should make the time to write something. So I log on to my blog and it tells me it’s been two months since I last posted. Streuth! This blogging business is high maintenance I tell you.

As way of a brief update: I went to Washington DC in May and am currently 6 weeks into treatment. It’s been a bumpy road so far, but I’ve been warned that this is a long treatment plan and to expect a marathon rather than a sprint (hurray, because I had so much fun that time I ran a half-marathon…). My physical health has been very variable, but I must confess that my mental health has been consistently struggling. There you go. I’ve broken the British we-don’t-talk-about-how-we-feel tradition and am laying my cards on the table. Although to be fair, I work in mental health research so if us folk can’t be honest about mental health, we’re all doomed.

I’m not sure why my mental health has taken a turn, but I’m trying not to fixate on it too much. Embracing my inner buddhist, I am reminding myself that a) life involves suffering, and b) our expectations, desires and aversions create a second layer of suffering over and above the initial suffering. In other words, shit happens. But, we add a heap-pile of shit on top of the initial little turd by the way we relate to, and think about, the turd. Sorry for the shit analogy, I didn’t mean for that to happen. The Buddha expresses it much more eloquently:

“When an untaught wordling is touched by a painful (bodily) feeling, he worries and grieves, he laments, beats his breast, weeps and is distraught. He thus experiences two kinds of feelings, a bodily and a mental feeling. It is as if a man were pierced by an arrow and, following the first piercing, he is hit by a second arrow. So that person will experience feelings caused by two arrows.”

So with that in mind, I’ve upped my meditation practice and am focusing simply on trying not to exacerbate the suffering. Along this theme, I’ve found myself thinking a lot lately about all the things I have learned from chronic illness. So here are just a few…

1. Cherish the small things

When life is going well, I feel like we get a bit greedy. We take health, happiness, love etc, for granted. When it’s gone, your baseline level of expectation changes. And so, for example, when you’ve spent the last week in bed, stepping out of the front door and feeling a gentle breeze against your skin, makes you feel so alive. But isn’t it kind of sad that we don’t notice those things until we’re in a bad place? Over the last couple of years I’ve really started paying more attention to the little pleasures, and somehow even the darkest of days can feel a little brighter when you notice the sun shining or the sounds of birds or the kind person who held the door open for you. Cherish the small things, because when the big things aren’t going very well, they can be a surprising source of joy.

2. Keep hold of your real friends and let go of the rest

That old cliché is true, you really do find out who your real friends are in times of adversity. I have to admit that over the years, I have often been surprised by the level of support offered by people I would consider more acquaintances than friends, and the lack of support sometimes offered by those I thought were close friends. Of course, everyone has their own stuff going on and it’s unreasonable to expect any friend to be there for you 24/7, and I also recognise that being chronically ill can tip the balance of friendship somewhat. I, for example, cannot reliably offer any of my friends regular catch-ups over tea, because my ability to meet and do friend stuff relies on it being at least a sort-of-alright health day, and that is difficult to predict from one day to the next. But, my good friends, although I’m sure inconvenienced and perhaps a bit miffed that I can’t always be there, never make me feel guilty for that. They understand, they accept, and they are kind. My university friends, despite only managing to see them once or twice a year, will often send me a “how are you?” text or offer me a real listening ear on the rare occasions we get to meet up. Chronic illness is truly lonely and isolating at times, but having even a small handful of good friends makes everything feel a little less miserable.

3. You are the expert of you

I’m sure there are many medical professionals that would cringe reading this, but frankly I don’t care because it is one of the biggest lessons I have learned in my years of ill health. I don’t care what anyone says, you know when something is really not right in your body. Maybe it doesn’t make sense, maybe medicine has no explanation for it, maybe when you say it out loud you sound totally off your trolley. I don’t care, if it’s happening in your body then only you know what it feels like. There have been so many times over the years when I have tried to explain to a doctor a set of symptoms, or a feeling, or a pattern, and I have been told that what I’m describing is simply not possible, only to later discover through my own reading of the (scientific) literature, that it is, in fact, entirely possible. Doctors don’t know everything. Science doesn’t know everything. That’s what makes science so exciting, there are new things to learn all the time! I was told for years that it was impossible to have severe flu symptoms with every menstrual cycle. For about two years I had the exact same symptoms, at the exact same time, every single month. I knew, 100% without any question whatsoever, that this was linked to my periods one way or another. And the same GP told me month after month, “it is not possible”. Many years later I saw a gynaecologist who agreed it’s unusual but acknowledged, nonetheless, that there was no doubt it was happening. And I now know that menstrual flares are reported anecdotally by thousands of women with Lyme disease. Maybe you haven’t been to medical school, but you have lived with your body every day since you were born, and you know what is normal for you.

4. Be your own advocate

Related to number 3. This has been a hard lesson for me and one I am still working on, because being assertive does not come easily to me. I don’t want confrontation, I don’t want to have to argue my case, I just want to sit quietly in the corner and mind my own business. Working in academia has helped me massively with this, because you always have to justify yourself in science, and sadly, no-one will do the speaking for you. Only you can say what you need. If you’re not getting what you need, there’s no point sitting around being polite about it. The onus is on you, and only you, to create change.

5. Life isn’t a race

When I was younger I used to put so much pressure on myself to achieve, achieve, achieve. I, like many young people I’m sure, was convinced I’d be married with kids and a successful career by the time I was 30. Well I can tell you, 30 is creeping around the corner and I’m not married, am currently unable to have children and am going to be a full-time student until 2019. And I’m chronically ill; the limitations of which I could never have imagined as a child. But I am an infinitely better person now than I was then. I am more patient, more chilled out, more confident, more thankful, less pessimistic, less judgemental. I still have a way to go on all those things and more but that’s exactly the point – life is a journey, not a race to the end. There is no deadline for growth, for change, for learning. You haven’t suddenly made it the day you get married or have a kid or get a promotion or own a house. As soon as you reach one goal you will be thinking about the next in the hope that it will suddenly make things better; make you better. So what’s the point of racing so fast to the next goal that you don’t even stop to enjoy the scenery? Of all the things I have been forced to take note of in recent years, the thing that has changed me the most is simply learning to take it down a notch. As much as it pains me to admit it, I know that when I push too hard, my health suffers. That might be doing too much exercise, not getting enough sleep, having an argument, over-working, or just letting myself get stressed by day-to-day life. Chronic illness has forced me to pay more attention to the warning signs my body provides, and although the limitations of that can be very frustrating, it is also a relief to feel like I have permission not to constantly worry about expectations and achievements.

There are many more things that I have learned from chronic illness. Perhaps I will write a part 2 to this post at some point. When everything feels a bit overwhelming, it can be really helpful to take a step back and look at the bigger picture. For anyone looking in from the outside, my life is far more flawed now than it was 10 years ago, but yet, on the inside, it is so much more fulfilling.

Chronic Illness & Fear of Judgement

I’ve always been a socially anxious person. At the root of social anxiety is a fear of being humiliated, scrutinised or judged. When I was younger, I think I was quite a judgemental person. I was quick to criticise and see the worst in people; other people, as well as myself. As I’m getting older, I am learning how unacceptable and unnecessary it is to judge anybody for anything. We are all just trying to do our best on our individual journeys. Yoga has helped me immensely with this. It teaches me and reminds me, every day, to accept where I am in my own journey, both on and off my yoga mat. And I think that by learning not to judge yourself, you inevitably learn not to judge anyone else.

That said, I am definitely not perfect in this regard and I still sometimes catch myself making an unfair judgement about another person or, more often, about myself. I also still have an incredible fear of being judged by others, and this creeps into almost every element of living a life with chronic illness.

As an example, I have quite a serious phobia of doctors. This stems, I know, from countless appointments with GPs where I have not been treated with the respect or dignity that all patients deserve. Like the time I was told that there was “no way” I could be experiencing the symptoms I described because they were “medically impossible”. The time I was told that I couldn’t be that ill, because I had a boyfriend (apparently really sick people can’t meet members of the opposite sex). Or the time, and this is no word of a lie, I was told to “go to Africa and see starving children if you really want to know what sick is”. These comments are rude, insensitive, unkind and extremely damaging. They are judgemental. Anyone who knows me will know that, like many people with chronic illness, I really don’t exaggerate my symptoms. In fact, I am so afraid of people thinking that I am exaggerating my symptoms, that I massively under-report them. So when I go to the doctor to discuss my illness, I am not being a hypochondriac or a drama queen, I am simply seeking help for symptoms that are having a significant impact on my quality of life.

Despite this, I have been made to feel so stupid, over-the-top and unworthy of a doctor’s time, that I have a serious and significant fear of going to the doctor. As someone with chronic illness, this is a problem. It means that I am not properly monitored. It means that there is no one person who oversees my medical care or knows what treatment I’m having. It means I avoid telling my doctor how I’m really doing. It means that, 8 months after being diagnosed with Lyme disease, and 4 months into treatment, I still haven’t had a single conversation with my GP about it. If something serious happened to me, my medical notes are so out of date that no-one would know how best to treat me. My Lyme disease specialist requires me to have regular blood tests throughout treatment to monitor my liver & kidneys, and I am so afraid of speaking to my GP about it that the thought of even making the appointment is keeping me up at night.

The fear of judgement doesn’t stop at the doctor’s office. I am very private about my health issues and there are very few people who know a lot about it. I am trying to get better at this, because keeping it a secret is very isolating and makes me feel lonely and disconnected a lot of the time. I think it is essential for humans to have connection. Even as a socially anxious person, it is important to have meaningful relationships and to not feel like you have to hide what your life is like. But yet, the thought of sharing the details of my illness and treatment with other people fills me with fear because I have no idea what people will think or say. Sometimes I get snippets of opinions or advice that give a little hint that someone is making a judgement. The sad thing is that I know these people most likely have no intention of judging me and probably don’t even realise they are doing it. They are good people; people I like and respect, but still, the subtle signs of judgement are there.

Like, for example, the person who tells me that they think people with chronic illness should learn to live with their symptoms and not let the search for a diagnosis take over their lives. Or the person who told me how they had learned to live with their own condition (a condition very different, by its nature, to mine), and that I should do the same. Or the person who told me they thought the treatment I was having was very risky and that I should find a different doctor. These may all be valid arguments, and they may be well-meaning. But they have one thing in common: they all contain a “should”.

The word “should” suggests that you are making a judgement. It suggests that you think the person at the receiving end of the “should” needs to be doing things differently, or making different choices. That, if you were in their shoes, you would be doing a better job. I frequently catch myself using the word “should” in my head, and I like to challenge it because it typically means I am judging myself (you should be better than this, you should have done xyz by now, you shouldn’t be getting so upset…). Not only is judging someone unneccessary and potentially harmful, but it is also unfair. How can we possibly say what someone else should or shouldn’t be doing, when we have not lived a single second in their shoes? How can we decide what choices someone should or shouldn’t be making, when we have no idea what life is really like for them, or the struggles they experience each day?

I know that my fear of judgement is something I still need to work on. I know that it stems from social anxiety and a few bad experiences, and I know that there is value in learning how to let go of what other people think. But I also think that we all have a responsibility to catch ourselves when we are being judgemental. To question whether we are really in a position to make that judgement, and to consider what it might be like to walk in someone else’s shoes.

The balancing act of good days & bad days

The last few months have been a strange time for me. After a relatively good January, February-March was one of the longest bad spells I have had for a while. The bad days far outnumbered the ‘good’ days. My health always goes in waves; bad patch, good patch, bad patch, good patch. But the length and severity of the bad patches, and the length and ‘goodness’ of the good patches, varies massively. I guess this means I have good and bad patches of good and bad patches?! That’s a head-scratcher.

A longer-term good patch might be 2-3 fairly bad days, followed by 4-5 pretty good days, then back to a few bad days, etc etc. February/March was a longer-term bad patch. This means several weeks at a time of bad days, followed by perhaps 1 or 2 days of feeling a little better, of hoping that the bad patch was over and I was on my way to a better place, only to be met by another few weeks of bad days. It is at these times that my mental health suffers most and I find it hard to cope. Having several weeks of bad days with only the odd good day or two in between, makes it feel very relentless. Somehow, having at least a few good days in a row makes me feel like I’ve had a bit of a break from it all. I get to do some nice things, meet some friends, hopefully do some yoga and tidy up the house a bit; before it all comes crashing down again. But the trouble with the longer-term bad patches, is that the good days are so massively outweighed by the bad days, that there is nowhere near enough time to fit in all the things that I want or need to do; the chores, the responsibilities, the workload, the relationships, and, most importantly, the fun.

And the strange thing is that those one or two slightly better days in between, can actually be worse than no good days. When it’s bad day after bad day, I somehow come to accept that I feel shit, and that there’s not much I can do about it. I know that nothing much is going to get done and instead, each day just becomes a quest for survival; the aim is simply to make it to the end of the day, no greater expectations. But when I have a glimpse of a better day, it gives me hope. Maybe a better time is up ahead. Maybe this is IT; maybe I am actually recovering and from now on it will just get better and better and I will never be as sick again as I was yesterday. Maybe tomorrow I will be able to clean the house. Maybe tomorrow I will be able to go to yoga class. Maybe this weekend I will be able to catch up with some friends.

I have written before about how important hope is in chronic illness. How, when all hope for a better future is lost, chronic illness becomes unmanageable. And in the bigger picture, I still think this is true. But day-to-day, hope can also be crushing. Because when I wake up tomorrow and it is, in fact, not a better day, there is a sense of loss. Grief, even, for the good day I thought was mine for the taking. Disappointment that I won’t be able to fulfil my hopes of getting the housework done or having a productive day at work. Guilt that I will have to let my friends down, for the millionth time, because those plans I had scheduled on a good day, are no longer manageable when today is a bad day.

On the good days, my awareness is suddenly brought back to all the things I want and need to be doing. I feel like I have been left behind from my own life. Like I have to catch up on all the things I missed out on on the bad days. And I have to suddenly catch up on it all right this second, before the opportunity is taken away again.

Chronic illness is the most enormous juggling act. I have the to-do list of a healthy person, with only a fraction of the days in which to complete it. The first good day after a bad spell brings so much pressure. What do I prioritise today? My instinct is to prioritise work. My PhD is important to me; it matters. And after several days or even weeks of feeling like I have only been touching the surface of what I want to be achieving, the sense of suddenly being able to work at full-pelt feels liberating. But then….what about the housework that needs doing? Those jobs that I simply have not been well enough to worry about, like scrubbing the shower or changing the bedsheets or emptying the bins. Wouldn’t it be great to get those jobs done so I don’t have to worry about them if tomorrow is another bad day? But then, what about yoga? Oh how nice it would be to roll out my mat and stretch my body and feel my breath and focus on how good I feel after being curled up on the sofa for so long. Or better yet, I could go to a yoga class and combine the joys of yoga with a change of scenery and some social contact. But, what about those friends I’ve been cancelling on recently? Wouldn’t it be great to give someone a call and catch up over a cup of tea? To be able to talk to someone about what a tough time it’s been recently and how grateful I am that today is a brighter day. To ask how they are and what has been happening for them. To chat, to laugh, to moan. To be a friend. And what about my relationship? Wouldn’t it be amazing to head out for dinner or go to the theatre or out for an evening walk? Wouldn’t it make me feel so happy, so alive, to be able to be a girlfriend and focus on his needs, on our needs?

How on earth does anyone make such choices? We all lead busy, stressful lives, and we all have to decide what we want to prioritise. But when the number of days available to you are cut so significantly, and when you have absolutely no idea when the next available day will be, how do you decide? And then there is the risk of trying to squeeze in too much; of tiring myself out and bringing myself crashing back down into another bad patch. Every tiny decision of how to spend my time feels like life or death because the consequences are enormous. There is a constant pressure to make the right choices. To not fuck it up, for myself or anyone else.

And yet, having to make these choices forces you to think about what is really important in life. I don’t want to live in a pigsty, but does housework really matter? When I’m on my deathbed will I look back and say “I wish I had changed the bedsheets more often”? My PhD is important to me and I want to do well, but as PhD students we are always taught to let go of perfection; to learn how to just be ‘good enough’. Perhaps I am lucky that chronic illness doesn’t even give me the option of perfection, that I have already had to learn how to be ok with being ‘just good enough’. So what really matters to me? Relationships. Nature. Yoga. Being present in the here and now. Making the most of all the things I am fortunate enough to have in my life because, as chronic illness has taught me, there is no guarantee that those things will still be here tomorrow.

Published on The Mighty

Wellness Wednesdays, and making time for me

You should sit in meditation for twenty minutes every day. Unless you are too busy; then you should sit for an hour.

Zen proverb

A friend shared this proverb with me a long time ago, and I often think of it when I am struggling with my own meditation practice, dietary habits, and all the other things that I try and prioritise because I believe they make a difference to my wellbeing.

There is no denying that we live in an incredibly fast-paced world. The level of expectation on all of us to achieve and to ‘do’, is crazy, and finding the space to slow down and take time out for ourselves is becoming increasingly difficult. However, I do also think that it is our own responsibility to choose what we prioritise. The phrase “I don’t have time for that” is one of my biggest bug-bears, even though I catch myself saying it often, if not out loud then at least in my head. Because what we really mean when we say “I don’t have time for that”, is “that’s not a priority for me”. How can I tell myself I don’t have the time for meditation today while watching dog videos on facebook or googling some shit that I really have no need to google? And when I write it on my blog it sounds totally ridiculous and stupid, but it is a genuine struggle to make time for the things that really matter when technology provides us with constant distractions.

There are lots of things I try to prioritise in order to help my health. This includes eating a paleo diet, which means cooking pretty much everything from scratch and very few shortcut meals like pizza or sandwiches or pasta. It includes regular meditation which I know has a positive effect on my stress levels and therefore on my health. I have found that the key to a successful regular meditation practice is setting aside the same time every day in which to do it. But this brings its own challenges, especially since the only time I reliably have free every day is first thing in the morning. And getting up half an hour earlier is all well and good when I’m feeling well, but when I am sick and literally feel like I have the flu, it’s not so easy. Stress is a huge trigger for my health and so I try really hard to not overdo it, to keep at least a couple of evenings every week free in my diary for rest and recuperation, and to allow myself plenty of downtime. But this becomes increasingly difficult the better I feel. If I’m having a good day or a good week then I want to do absolutely everything right now – I want to embrace the good and make the most of it, because I know there is a good chance tomorrow won’t be so good.

I am grateful that chronic illness has shown me the importance of looking after myself. I am grateful that I know how to take care of myself and that I have the resources to do so. But, I am still human after all. I still have a job, a house to look after, a relationship to nurture, friendships to cherish, rabbits to take care of… as well as all the stresses of chronic illness.

So this week I have introduced ‘Wellness Wednesdays’ into my life! This is one day of the week where I promise to myself – no social media, no excessive scrolling through google, no rushing around like a headless chicken. Today I have meditated, I have eaten well, I have rested, and I have chosen to prioritise the things that nourish me. That’s not to say I won’t try to do all of those things again tomorrow. I try to do them every day, but I also accept that it is not always easy. Wellness Wednesdays is an opportunity for me to remind myself of what really matters. To prioritise me. I would love to have some company in my quest for Wellness Wednesdays, so if you fancy joining in, message me! 

The art of self-acceptance

When you are living in hope of a different life, you are wasting the one you already have.

The last couple of months have been quite bad for me health-wise. I’ve cut right back on my hobbies and social activities because getting through a day at work is, most of the time, all I can manage. This has meant a huge cut in the amount of time I’ve spent with my friends.

For some reason, socialising is particularly exhausting when I’m unwell. All activities are exhausting to some extent, and pacing is a concept I am finally trying to increasingly bring into my life. I have always been very resistant to the idea of pacing – I don’t WANT to rest, I shouldn’t HAVE to rest, it’s not fair blah blah blah woe is me. But recently I have begun to accept that this is my life. Whether or not it’ll be my life forever, I really don’t know. I sure hope not, but right now this is what I’m dealing with and being able to pace, knowing when to stop and learning where my boundary lies on a particular day, is something I believe will be really important if I want to maintain a reasonable quality of life.

But for reasons I’m not quite sure of, social contact is one of the activities I have to be extra careful with. As a fairly introverted person I think part of it is just that it’s in my nature to find social situations quite tiring. But there definitely seems to be some relationship to chronic illness, and I’ve interestingly read some other blogs that have said similar things. Social interaction is just exhausting when you’re battling poor health.

An extra challenge arises when your health is unpredictable, because social events require plans, and sticking to plans can prove to be very tricky if you don’t know how you’re going to be feeling on any given day. There is nothing much that makes me feel worse than having to cancel on a friend because I’m too sick. Not only do I have the usual disappointment for myself not being able to do something I was looking forward to, but there’s the added guilt of having let your friend down last-minute.

So, much to my sadness, meeting up with friends has taken a bit of a back seat recently. Today I drove past a restaurant where me and one of my close friends like to go, and it made me think of her. She had a very important interview recently and I wasn’t able to offer her help in preparing for it as I had hoped, as I wasn’t very well. I was suddenly hit with a huge wave of guilt that I have really not been much of a friend to her recently. So I sent her a message to say I’m sorry I’ve not been much fun lately. And this was her reply:

“You don’t have to be fun….ever”

Those few small words meant so much to me that I can’t even begin to express it in words. Because, those words imply one thing – acceptance. My friend is accepting me exactly as I am right now. Not as the version of me I wish I could be more often. Not as the healthy me. Not as the fun me, the drunk me, the let’s-go-on-an-adventure me, the I-can-help-you-with-your-interview me. Just me.

I am very fortunate to have a handful of people who show me complete acceptance. My family are wonderful, never expecting anything from me, but giving me infinite love and support. Likewise, my boyfriend has shown me that it’s ok to rest, to take care of myself, even if that means sacrificing fun plans we have made together. And I have several friends who, despite all the times I’ve had to cancel my arrangements with them, have never responded with anything other than “get well soon”.

Self-acceptance is hard for us all at times, but it is especially hard when you crave a life that you cannot live. I long for good health, for my illness to be taken away and to be able to live a life without it. But I think it’s fair to say that for the forseeable future that probably isn’t going to happen. Life is now more about managing it than curing it, and with that comes a longing for all the things I feel I am losing or have already lost. It is a fine balance between acceptance and giving up. I don’t want to give up on the notion that I may achieve good health again one day. But I also don’t want to spend much more of my life wishing for things to be different, because when you are living in hope of a different life, you are wasting the one you already have.

Accepting a situation that you are unhappy with is not easy. Accepting a version of yourself that you wouldn’t choose to be, is not easy. But having total acceptance from the people you care about is one giant step towards self-acceptance.

Lonely companionship

Loneliness is a funny old thing. I’m 28 years old and I have a more active social life than I’ve ever had. I have so many wonderful people I can call friends, friends of all ages from all walks of life who each offer me something different but equally rewarding, and who I can hopefully offer something to in return. I have a big and very supportive family who all live nearby. And I have a boyfriend.

And yet, chronic illness leaves an inevitable trail of loneliness. The unpredictability of good days and bad days means that you can go from a social life in full swing to intense isolation at the drop of a hat. Days and evenings where your fun plans are cancelled in exchange for pyjamas and the television.

Even when I’m not physically isolated, when I manage to make it into work, to yoga class, or even to meet up with friends, I often do these things feeling a long way off 100%. There is a constant trade off between not pushing myself too hard but doing as much as I can for the sake of my mental health. And therefore, sometimes I do things when I know in my heart that my body wants me to rest. I think this is probably something I need to get better at; listening more to my body. But these are hard decisions to make on a daily basis, knowing that going out might make you sicker, but staying home might push you over the boundary into an emotional low.

And so, sometimes, I will be out and about, doing my daily routine while feeling unwell. And it is in these moments, when I am physically still connected to people, that I feel the most isolated. Because in those moments I look around and see my friends, family, colleagues, living the life I long to live. I am filled with envy for everyone who is able to get on with their day to day life without the constant worries of chronic illness. It is a stark reminder of how hard it is for anyone else to understand my situation, to understand how it feels both physically and mentally to be living my world. I guess, ultimately, we are all alone in our bodies; no one else will ever know what it is like to be us. But on those days when I am functioning on the outside as a ‘normal’ human being, while feeling sick and tired as though the life has been sucked out of me on the inside, I feel a sense of deep loneliness and isolation, no matter how physically connected I am to others.

With my usual positive hat on I am trying to find a nice, cheerful way to wrap up this post. But I promised myself this blog would be my place to write my true feelings; not a show for anyone else, but a diary for me. So, here it is. I’m 28 years old. I have friends, family and a boyfriend. And sometimes, I feel lonely.

Relationships, love and infertility

This feels like an oddly personal topic to be writing about on a public blog, especially for me; a private, reserved, keep-myself-to-myself kind of person. But as I’m getting older, infertility is creeping up my list of things I need to be worried about. For me, fertility is a multi-faceted source of conern.

A little under a year ago I was diagnosed with Polycystic Ovarian Syndrome, or PCOS. Women with PCOS either don’t ovulate at all, or ovulate irregularly and infrequently. Without ovulation, there can be no conception. And so a common symptom of PCOS is infertility. In fact, many women aren’t diagnosed with PCOS until they attempt to conceive and find that they can’t. Luckily for most women with PCOS, there is a drug called Clomid or clomiphene, which can be used to stimulate ovulation and has a pretty good success rate. When Clomid is unsuccessful, IVF is usually the next option.

For me, however, those options are pretty much void. Because my EBV symptoms are so closely tied to my hormones, I currently take bioidentical oestrogen. My own oestrogen levels are excessively low due to PCOS, and when my oestrogen levels are lower, I get sicker. So I supplement with oestrogen and I feel somewhat better. I’m still trying to get my head around this relationship. It seems like friggin’ sod’s law that I would have chronic EBV which is activated when my oestrogen is low, AND PCOS which means my oestrogen is chronically low. I often think about this. I believe that a healthy body is a healthy body, and an unhealthy body is an unhealthy body. I just don’t think that diseases can be independent of each other, and I wonder if my hormones and therefore my PCOS, would improve or even resolve if my body could effectively deal with the EBV. Whether or not I will ever find out the answer to that question, I don’t know.

The catch-22 is that fertility drugs, including Clomid and those used for IVF, would require me to stop taking oestrogen. And that would mean being horrendously sick. It would mean giving up work, giving up my social life and hobbies, and spending the vast majority of my time in bed, horribly sick. This isn’t just a glass half-empty moment; I’ve been there before, with my own super-low levels of oestrogen and the EBV in pretty much a permanent state of activation, and it wasn’t pretty.

So, if at some point in the future I wish to have children, there’s a good chance I’d need to stop the oestrogen in order to do so, and I have to seriously question whether I want children that much or not. The other factor of course, is that raising children whilst chronically sick would be quite a challenge. I already struggle to keep up with the demands of life. A full-time job is extremely difficult at times, and if it weren’t for my current employer’s flexibility with working patterns and allowing me to work from home, I probably wouldn’t have a job at all. Household chores are also difficult at times, and I’m lucky to have a boyfriend who shows me endless amounts of patience, understanding that sometimes I can do more, and sometimes less. But add looking after children to that mix, and I honestly don’t think  I would manage.

So ultimately, I think my ability to have children rests entirely on finding some answers to EBV, and finding a way to improve my quality of life. I gave up on any realistic chances of finding a complete cure some time ago, but I do hope that I may be able to achieve a level of health that will allow me to conceive and raise children.

I’m 28 years old and, for the first time in my life, I have a man by my side who I think I’d quite like to be the father of my children. That is a wonderful thing, but it brings with it many emotions. Sadness and grief that I may never be able to fulfil that dream, disappointment that it might never be the happily ever after I dreamed of as a child, and worst of all, guilt that not only may I not be able to realise my own dreams, but that I may kill someone else’s dreams too.

For now, I am trying to live by the rules I always made for myself. Live for today, not tomorrow. Focus on what you can do, not on what you can’t do. And think about what you have got, not on what you haven’t.

 

Where I’m at now

Read My story Part 1 and My story Part 2

8 months after receiving a diagnosis, I am doing much better. I have many days where I feel well, I have energy, and I can spend time doing the things I love, with the people I love.

But I am nowhere near a level of health that I am happy with. I still have many days of sickness. The last month has been particularly bad, for reasons I’m not entirely sure of – stress I’m sure is a factor, having just moved house and having some emotional stresses recently too.

My latest bloodwork showed that my oestrogen levels are within the normal range, although still on the low side. All my other hormones are now normal, presumably thanks to the medications I am on and the lifestyle/diet changes I have made.

My attention recently has moved towards other factors besides hormones. Ultimately I have a burning desire to understand WHY this has happened to me. Sure, my hormones have been all over the place and I know that this makes me very sick. But WHY does it make me sick? There are millions of women all over the world with PCOS, but most of them don’t have CAEBV. I believe that something has gone fundamentally wrong with my immune system. I believe that being on the contraceptive pill at such a young age may have had something to do with that; the undeniable link between my symptoms and contraceptive pill use in my teenage years points me in that direction. But I’m not on the pill now, and my hormones are (relatively) normal. So why do I still get sick?

In creating the ‘About ebv’ page for this blog, I have found some new research about CAEBV. I have yet to read them in full (academic publications about the immune system don’t exactly make for light reading…), but I am hoping to get a better understanding of what scientists DO know about CAEBV, and what treatments are being investigated. I know that my chances of receiving any of those treatments anytime soon are very slim, since most of them are only in the experimental stages. But knowing that there are people out there trying to make sense of this illness, and trying to find novel treatments to improve the quality of life of people like me, fills me with so much hope. I am so unbelievably grateful that I have a diagnosis, that I have the ability to follow and understand the science, that there are people out there trying to find answers, and, most importantly, that I have wonderful loved ones who are on this journey with me.

The blogging effect

A little over 24 hours since I became ‘ebvwarrior’. A half-hearted, unconsidered decision. Turns out it may just be the best decision I’ve made for a long time.

I honestly didn’t think anyone would be interested in reading my blog. I don’t mean that in a self-pity kind of way, just that your own life always seems so mundane and average that you can’t really imagine other people being interested enough to sit down and read about it. I confess, this blog is a selfish blog. A way for me to track my progress, write down how I’m feeling, and keep a diary without it feeling like a naff polly-pocket affair reminiscent of my teenage years.

But since posting my first blog I have been inundated with messages from people all over: friends, friends of friends, friends of friends of friends. The last few weeks have been difficult and frustrating for me health-wise, and I was feeling a little worn down. But today, I feel uplifted and inspired by all you wonderful people who have taken the time not only to read my blog, but to actually take the time out of your day to write me a message of support.

Thank you readers, I feel infinitely less alone than I did 24 hours ago x