Today marks one year since my diagnosis

Today is a weird day. One one hand today there is only 3 months until I marry my partner. A partner who is my rock and support and who, for some reason, doesn’t seem scared off by the fact that I am batteling all these physical and psychological issues.

But the other thing today marks is the one year anniversary since I was officially diagnosed with Hypermobility Spectrum Disorder (HSD), which has since then been changed to hEDS (hypermobile Ehlers-Danlos Syndrome), which is pretty much the same thing only it has the criteria that there should be others in the family also meeting the criteria. They are trying to make the criteria tighter in order to find a gene/gene group so diagnosis will be easier, but as of now getting diagnosed is just a matter of actually finding a doctor who knows about the disorder.

But yeah, one year. One year since I was told that the pain, aches, dislocations, inflammations, weakness and fatigue I felt constantly was not just because I was going through a bad time, but that it was something I have to battle and deal with for the rest of my life. And since then my body decided to have a complete meltdown with more subluxations, inflammations and generalised pain in the past year than I have ever had before. I have had to make changes in my career (I am now part-time in my PhD), my living arrangements (I now live in my home country) and in my social life (pretty much a hermit by now). I have had to deal with the fact that if I don’t get to a point where I can keep my muscles strong I could end up in a wheel chair. It has been the worst year of my life.

I have already described my progress of being both relieved and extremely scared by finally getting my diagnosis in another post, so there is no need to describe that again. But the state of my life right now is: off sick from uni, in constant pain, saw 5 different doctors yesterday to follow up on my shoulder, leg, womb, and general pregnancy planning things. Got another appointment today.

My depression is back. Again I don’t know when it started, but there has been a lot of huge changes in my life recently and I simply haven’t been able to manage. Everyone else says that I shouldn’t feel bad, just doing one of those things (move country, plan a wedding, etc) is enough to make most people struggle and then adding a chronic pain disorder on top of it, well, that is just a bad combination.

When I saw my pain doctor yesterday, the first thing he did was to hug me. Look at my meds, tell me to start taking my meds for depression again and tell me to relax and just get my nervous system back to normal before we even start any rehabilitation. My physio said the same. My exercises consist of breathing. Or, you know. Conscious breathing. Anything else would set me off.

I am not sure that it is just all the big changes in my life that has caused this downward spiral. I think the fact that this day, the one year anniversary, has been on my mind for the past month at least. I think that has affected me. I have been aware of it, prepared posts about it and I have started being more… vocal… about it. I want to be more vocal. I want people to know about the disease. I want people to know that there are so many psychological aspects that go along with it, that quality of life is just so much lower than the unaffected. Living in chronic pain and fatigue… just isn’t.. ideal. No, it sucks balls.

I worry about how it is affecting the people around my. I know my partner is worried. And I know he is struggling. And I want to be there for him, but most days I just don’t have the energy. Which makes me feel worse and then makes him feel worse because he gets more worried and anxious. Kinda a vicious spiral. And I need it to be broken. And so does he.

I know this post reads different from my other posts, it doesn’t feel as open and honest, but I think it is because I am distancing myself a little bit. I’m not describing my feelings as much as some of my previous posts, not because I don’t want to, but right now, I’m just kinda numb. I feel clinical. Like my brain (when it isn’t fogged up by meds) just kinda goes ‘okay, so you feel this pain, this pain, this fatigue, this limitation, this makes you sad, etc. But to be honest, I’ve pretty much spent the last month crying. And the last few days sobbing uncontrollably. At least until I started taking the antidepressants again. I know they aren’t actually working yet, it takes a couple of weeks, but the decision to take them and to cut down on everything has helped me. Made me feel like I have a little bit of control. And then seeing a bunch of doctors, getting some steroid injections and stuff like that, knowing that one of my main pain areas will get better with the injection. Well, that helps as well.

Another thing that has helped is finding a way to tackle one of my main fears about my disease (disorder, whatever – chronic shitty body). I am so scared about motherhood. I know the pregnancy will be tough (though actually hearing from a specialist yesterday that all of my medications can be taken during pregnancy, only I may feel more pain in the areas I usually feel pain due to all the hormones that their effect on my hypermobility was such a relief). I will probably be sick (my whole family are so affected by morning sickness that they are unable to do much the first part of pregnancy, my mum was even hospitalised) and I will probably be put on bedrest if the ligaments in my hips and pelvis goes lose (very common in hEDS) and having a normal delivery was suggested to be avoided as I will probably end up pushing past the limits of my body, so a C-section was recommended. I am not actually pregnant, but it is good to be prepared before anything happens.

I am worried about being a mother though. I know I would be a wonderful mother and my partner would be such a devoted dad. But how do I explain my disease to a child. How do I explain that I am in pain, or tired or.. yeah.. like, I can barely explain to adults everything that’s going on with my body. And I am already angry at my body that I won’t be able to be the kind of mother I want to be. But I am determined to become better. Stronger. Healthier. It is a good motivator.

My biggest fear, however, is that I will pass it on to my child (if I get to have one). It’s genetic so there is a pretty big chance, especially if it is a girl. I don’t think I would be able to bear seeing my child in the kind of pain I am in. It would literally break my heart with guilt.

But these are the kinds of thoughts and worries I should try and avoid. Easier said than done, they are literally on my mind every second of every day. But they aren’t helping, there is nothing I can do, other than decide not to have a child that is genetically mine, which I genuinely consider as well. And there is a chance that my child won’t get it. That it won’t be symptomatic if it does get it. I was (mostly) fine until I hit puberty, so why shouldn’t they be. I don’t know.

Man, this became quite a mess of a post. But year. Thank you for reading. Stay strong. You are not alone.

– N

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Yet another hospital visit

As I am writing this I am in the hospital… I know right, dramatic start. But yeah, I am currently in the hospital. I was put here because I had surgery a week ago for endometriosis and had a coil put up to try and prevent more. And obviously that was a bad idea. I had that one rare reaction that my gynaecology consultant at a big private hospital in London focusing only on women and children has only seen once before in his career. Yup, 1 in more than 500.. or I suppose now it’s 2 in more than 500.

For the past week I have literally not been able to think or do stuff that required any sort of precise actions. Yesterday when I was admitted I couldn’t read out a string of 8 numbers, I couldn’t walk unaided and I couldn’t write my name.. not being able to write your own name.. that was rough.

But what is more is that of course this would happen to me. If there is a chance of having a weird reaction to a drug or a treatment then obviously it’ll be happen. Why not?

I think one thing that has become quite clear is that this academic year has been the worst year I have ever experienced. Since starting the PhD I have been more unwell than I have ever been before. It is like it kicked off everything. Maybe it was just a bit of stress and depression that got things started, an increase in pain meds because of finally getting a diagnosis at the same time as feeling utterly useless and like a huge disappointment academically. My medical leave helped on the mood side of things, but my pain system got kicked off by that injury in my shoulder and for most of April and May I have been unable to work because of day-long migraines with sensitivity to light. Now it is June and every day that passes I get more and more happy at the decision to quit my PhD. Starting it was probably the worst decision I have ever made. Despite a bad start with my supervisors (well, not really start as they have been my supervisors for years, but start to the PhD at least) they really are very supportive. They are quite worried about my health, thought obviously with a focus on my ability to work/my ability to at least get something out of this PhD. They are constantly trying to limit what I am taking on so I will get a finished product of a little analysis rather than just the frame of something bigger. But it is also coming to the point where almost every time I email them I am emailing for them with some new health issue which means I can’t work for a bit.

It has been a few weeks now, I am heeling and recovering and my doctors have offered me notes to have more time off. I have refused though. I don’t want any more time off, I just want my life to get back to normal, to try and feel less like an invalid and more like I actually get something done each day.

There are of course new things to stress me out, but so far the change is for the better. I seem to be coping and every day I am told how proud my partner is of me. It’s nice to see him proud rather than sad because he can see how much pain I am in.

I’m back.. sorry for the long time between posts.

Hi everyone.

So again, it’s been a while. While I was on leave there really wasn’t much update on the PhD, so I haven’t really had anything to write about, this post will be about what has happened during the leave and the last month or so while being back to work. This post is gonna be quite medical-heavy, but as this is pretty much part of my daily life, it would be hard to ignore.

The leave was good, I went to the gym, I felt stronger and up until March everything was actually going really well and I was ready to return to work 1st of April.

Unfortunately the pain in my back came back, and it set off my leg, so for after 2 weeks of debilitating backpain I started getting nerve-pain going from my hip down the leg, through the knee and continue to underneath my foot. As you might imagine, that was pretty horrible. I kept thinking it was going to go away and since I had an appointment with my pain doctor next week, I would just wait until then.

Unfortunately it just got worse and worse. I couldn’t fall asleep and I woke up a couple of times a night from the pain. When I finally saw my doctor he reprimanded me for not having seen him quicker and he quickly located the problem and arranged an ultrasound a few hours later. I got the results the next day and apparently the bursa in my shoulder was super inflamed, which was causing the pain in my back, because the muscles were being weird and that then set off my leg, because my body automatically things that when anything is wrong, it is the leg and that is where pain goes, so I got a steroid injection the next day.

As some of you might know, a steroid injection is great at helping with inflammation, but it is also pretty painful for the first week or so before it actually kicks in, so I had another week of not feeling great.

But knowing exactly where the problem was and where to put ice, helped me relax my hip enough to be able to click it back in place (HSD/ehlers-danlos, basically the same stuff anyway just a matter of heritability), which finally took away the pressure on the nerve that had been locked in place for what felt like forever and I finally had a good nights sleep.

As I am me and my body pretty much sucks, this of course didn’t last forever. 2 weeks after the injection my back and shoulder started acting up again. I went to see my pain doctor the next day, because I had learned my lesson (even my therapists told me off and we set up a plan for how many days I am allowed to be in pain before I take action and see one of my many, many doctors). He was pretty perplexed, and told me that it is not supposed to react like that. So I got an MRI of the shoulder to make sure there wasn’t a tear or something and it came back clean.

So basically what had happened was that my shoulder went ‘wait, you fixed the inflammation, that’s weird. I’m just gonna let this muscle spasm out, so out don’t forget what pain feels like now that you’ve had a few weeks off). So yeah, one of the muscles in my back had started spasming. So up with the pregablin, on with a lidocaine patch and up with the diazepam. I must admit, I was pretty stoned for the days to follow, but things were settling down, even if it made me completely unable to do any work, as stoned and academic articles just doesn’t really work together.

As you can imagine after this go, my physical level of strength is pretty much.. well, non-existent. The exercises my physio has prescribed me include standing up against a wall and doing 3 sets of 5 shrugs.. yes, shrugs. No weight added, it is as low-level as it sounds. But the thing is, that makes my muscles tired. I have literally nothing left and I have to start from absolute scratch.

And now you guys might think, ‘oh well, at least that is all sorted and things will get better with physio’. I know I did. But alas, my body doesn’t like not being messed up in some way for too long. So six days after the MRI of my shoulder, my foot started messing up. When I tried to put weight on it, it felt like it was going to shatter. So out with the good old crutches and hobble onto the doctor. It was something about a tendon being too tight (seriously, every tendon and ligament in my body are loose and now one of them decides to be too tight!) and putting on some bones making them sit on top of each other of rubbing against each other or something. He showed me pictures and gave me names, I think you get the general gist.

I got booked in with my favourite orthopaedic surgeon the following week and where ever she touched in my foot it was just a mess. Or, as she said it, everything is just quite angry in there. So I got sent for an MRI of the foot and ankle to see if I needed surgery (i.e. if it was something that could be fixed).

I got the results yesterday. There is nothing seriously wrong. A bunch of little injuries that we already knew about. The CRPS (chronic regional pain syndrome) is gone. The reason why I am in so much pain is because of the weakness of the muscles in my foot, my calf on the bad leg is half the size of the other one and because of my medical history. Any tiny change in my foot, such as a tightening of a tendon, will feel like a fracture or a torn ligament (which is interesting because when I fractured my ankle, when I got run down by a toddler on a bicycle a few years ago, I felt pain, but I kept walking on it for a week or so).

There is nothing they can do other than manage the pain. I have to do the rehabilitation and try and avoid new injuries. And if everything goes to plan I should be ‘back to normal’ in a years time… so.. yeah.. that was.. hard to hear. Harder to accept. A year is a long time.. and with my luck it will keep being delayed because of new injuries.

 

Anyway, on the PhD front. I have been back to work for a month now. Done pretty much nothing because I didn’t even know where to start, what to read or what to do. Meetings with my supervisors kept being postponed because of my medical stuff, being stuck in bed and so on, but last week I finally saw them.

And I told them that after the first year of the PhD (so when the MPhil changes to PhD) I don’t want to continue. That brings me up to December, by which time I definitely want to have relocated to my home country anyway. MY changing it from a 3 year project to a 1 year one (or 7 months really) made things easier. It means that I can continue working on the dataset I have worked on for the last 4 years and actually get it finished, maybe even ready for publication. We agreed on meeting every week to make sure I can manage the workload and I don’t take on too much and to ensure that I keep the coding as simple as possible. But already I have to miss the first two of these meetings as I have been put on sick leave for another 10 days.

So yeah, pretty long update, but I hope to be able to write a bit more frequently in the future.

Oh also, I have started looking for jobs in my home country and have had a few interviews, but don’t know the outcomes yet, so keep your fingers crossed for me!

So I haven’t posted in a while..

I haven’t posted since I was told to change the topic of my PhD, so I think it is time for a quick update explaining why.

After being told that I didn’t have the skillset required to do the topic that we had spent a year discussing as well as having a supervisor who kept trying to steer me towards doing my PhD part-time, I kinda spun into a bad place. Or.. Worse place than I was already in – I think we can all agree that I was not in any way in a good place to begin with. Whenever I tried to think about work my heart started pounding and my mind got stressed out with anxiety. I ended up staying in bed, lights off, no food or drink, no tv.. just nothing, just me and the darkness and a mind full of grey clouds. I got really bad body dysmorphia and every time I looked at myself I wanted to take a knife and cut out the pieces that I didn’t like. I would pick my face for half an hour each evening. So yeah, I was in a bad place.

Luckily, I have some really great doctors. My orthopaedic surgeon and my pain management doctor both saw me on a bad day and my appointment ended up lasting 45 minutes where they simply just listened to me. They referred me to a psychologist. I have seen a therapist in the past and was both worried and optimistic about the idea of starting again, but I am so glad I took their advice and made an appointment to see this one.

I started seeing her in December. I remember how nervous I was when I was going to my first appointment. I was so close to just going home again, saying that I didn’t feel well or that I didn’t want to start anyway or something like that. Simply to just keep going the way I was. But I went in and the feeling I had afterwards was pretty amazing. It was the first time in a while I felt some relief. Not only is she a good therapist, she has the same chronic illness as me, so when I spin out because I feel betrayed by my body, she understands exactly what I am going through.

I have seen her every week since then, which has obviously helped my mental health, but the biggest improvement has been when we discussed me going on medical leave. My grant allows for up to 13 weeks of paid medical leave and the relief of being paid and having time off to get better was simply more than I could hope for. The letter for my funders is going to be signed by my therapist and my two doctors.

I have been on leave for a month now and I can honestly say that it was the best decision I have made in a really long time. I sleep at night, I do things I enjoy during the day, I have signed up for a new gym where they have classes which should help with my illness and I am generally happier. I don’t have the constant pressure of deadlines, supervisors, lab squabbles, London transport, background reading, trying to catch up to some unknown ideal of what it should be like… none of that.. I just feel normal now.

Obviously I still have good and bad days. The past week I have pretty much been stuck in bed because of a backpain so bad that I have been unable to move my head, arms or shoulders. It started exactly a month since it started last time, where it lasted a week, so hopefully I just have a few more days to go. Chronic pain sucks, but without the PhD to make everything worse, it is something I can live with.

I suppose that over the next two months, I will have to consider whether I want to start up again, what that will do to my pain/stress/anxiety levels, but as it is right now, that is not something I want to think about. I am taking time off and refuse to even think about what it will be like when/if I start again.

I want to quit

10 days ago my supervisors told me to change the focus of my PhD. Change from the focus that we have spent the last year discussing. The focus that we have written up two separate grant applications on. The focus which was explored on my MSc thesis.

The focus that I spent the first month finding a theoretical basis for , so it wasn’t just focused around the equipment I wanted to use because I thought it was essential to studying this part of infant development. And when I finally found it and we discussed it in a meeting one of them said “this is really interesting but are you really the right person to do it? Do you think you have the skills?”. And I replied “I suppose not” and felt myself sink into that black abyss I always fall into when I meet with them.

It is not just that my mind seems to go foggy, my eyes seem to blur and all I can do is stare at the floor. I can feel my body giving up and my posture slacking, my shoulders slouching and everything giving up.

I know they see it. How could they not. And I think that’s why they want me to change. Do something simpler. Because I am not strong enough. I have problems they can’t even begin to understand. They want me to go part-time, but I can barely survive on a full-time PhD salary. What would be the point of working part-time on the PhD and doing something else part-time. It would have the same result. Except that I would be stuck in this hell for double the time.

The new topic they suggested is interesting enough. There are clear reasons for doing it. Clear theoretical backgrounds and lots of literature behind it. It is a good idea. A safer idea.

But the truth is that since that last meeting I have not been able to work. I wake up thinking that I need to start and have some good ideas, but then the depression takes me. I sink into my bed. Unable to focus on anything. All I feel is that dull, grey feeling. My back and chest feels like it is stuffed with foam. It doesn’t feel like my body and it feels like that’s where my tiredness is. Getting up is hard. Even though it feels like foam, it is heavy. Makes it hard to lift my feet. My eyelids are constantly half-closed. Opening them up fully feels like such hard work. It is easier just lying in bed, staring out at nothing and let the emptiness stay.

My doctors and physios see it. They try to help and they are amazing. The only time in the last few days I have actually felt good was when I asked for help (again, but this time from good doctors). Like there was a way to start feeling better. I got 2 days. Then the grey took over again. I can’t seem to stop crying. I just want to feel better. I am worried that I will bring my partner down with me.

I want to quit. I am not made for this. I should not react this way whenever I get negative feedback from my supervisors. Is getting to call myself Doctor really worth it? Right now it just doesn’t feel like it.

Can you fail your PhD in the first month?

I met with my supervisors a week ago. I hate meeting with them. (not actually seeing them, they are lovely people) Every time I get depressed and want to go into a tiny little mouse hole. It is always the same. ‘What is your main research question? Theoretically driven from a developmental science perspective’*. It seems like that should be easy enough. I have had so many meeting where I have had suggestions, but I always seem to miss. The question not being big enough or not being relevant enough or.. I am not even really sure, I just don’t seem to get it. And it makes me feel so crappy.

I know that I am good at what I do. I have worked on my research for 3 years prior to the start of my PhD and it seems to impress the right people when I present it at conferences. But still I am stuck at the elementary question – ‘Why do it?’. ‘Why not just do it the way we are already doing it?’, ‘Will it make any impact at all?’. It always seem like I end up at ‘We have this piece of technology which I think can really help with this paradigm so I want to do that’ but not really ‘This paradigm is super important in order to solve developmental questions based on these theories’. I don’t know. This should be the good part of the PhD. The one where you read and think about things, but I hate it. I really don’t think I am good at this at all.

On top of feeling incredibly down about my inability to think like a researcher, I have gotten nothing done at all since meeting with them. Not just because it stresses me out, but because time seems to have flown by. Travelling in to central London see doctors or doing physio tires me out. Or even worse, travelling in to do a 3 hour lecture sitting in the same uncomfortable chair for a lecture which is extremely irrelevant to me, but which I have to attend because it is arranged by the people who pay me. An hour in, 3 hours of sitting uncomfortably, doing small talk with people whose name I don’t remember and then an hour home. After this I am completely drained of energy. And yet I have only really ‘worked’ on my PhD for 3 hours and none of that includes stuff which actually matters and creates some kind of progress.

Yesterday was like that. I did the lecture and a few errands on my way home. I tried eating some lunch when I eventually got home, but at that point I was so tired and in pain that I just wanted to lie down. So I slept for 2 hours until my partner got home with a happy meal. Even this I didn’t really eat that much of. I went back to bed to read a bit and get ready for sleep. It got later than usual and I needed painkillers in order to actually be able to sleep… I hate having to take them. I know that they will work wonders once I take them and I will feel so much better and actually be able to get some work done or get a good night sleep. So why do I try and avoid taking them? Is it just because I am always a bit in pain so I know it will eventually go away on its own? Or worse, do I on some level ‘enjoy’ being in pain and use it as an excuse to do nothing? I really hope not. I hope it is just because I ‘know’ lots of painkillers are bad for you in the long run.

I need to sort myself out. But I don’t know how. There is too much stuff and even thinking about where to start seems overwhelming. Like I need to run a marathon, but really I have only just learned to walk. I have so much work to do and I get nothing done.

Even now. I should be working on a grant application and yet I am writing this blog post. But at least I am doing something somewhat productive, even if it not on my PhD. I am not just stuck playing a stupid game on my phone or binging some show on Netflix. Is that a trick I am playing on myself? It writing this just as bad as watching Netflix? I don’t know. I suppose I think this helps in some way. Get my thoughts sorted and written down. And then let them go by putting them out into the world. I hope it will help. I am sick of feeling like I am failing.

 

* FYI, I work in developmental psychology, so primarily with babies trying to figure out things about social cognition

11 days ago I was diagnosed with a chronic illness..

Today marks day number 12 of knowing what is wrong with me. Hypermobility Spectrum Disorder, HSD, hypermobility syndrome – lots of names for whatever it is. Basically it means that I am at the extreme of hypermobility so that it isn’t just the ligaments in my joints that are loose, but all the ligaments in my body affecting literally anything which has to do with muscle.

For the people who has read my first post you know that I was always ill as a child/teenager. This is why. It affects my gut, giving me cramps, it affects my stomach giving my extreme heartburn and nausea, it affects my brain giving me constant headaches and migraines. It affects my reproductive system giving me extreme pain at that time of the month and making carrying a child during pregnancy more difficult. It affects my heart and eyes. It affects my proprioception, meaning that I walk into things, bang my body on furniture because I just don’t know where my body is in space. It also means that when I do, I am more likely to bruise, sprain and fracture even though the impact is barely noticeable*.

It affects literally every muscle in my body making them work harder to do their job of keeping me upright and stable – so it makes me tired. And all of the above means that I am in pain nearly all the time. It is also highly associated with anxiety and depression.. like.. obviously.

Being diagnosed was weird though. My physio had flagged it when she went through my medical history and said she would check with my doctors (I have a handful I see on a regular basis) but that I should not start googling until we heard back. Next time I saw my doctor it was confirmed.

For the first 24 hours I didn’t tell anyone, not even my partner who I live with. I completely ignored it until next morning when I started googling details. Bad idea! I had known that it was related to my head- and tummy aches but looking through the sites I realised it was more. So I told my partner. In a facebook message. While he was at work. I literally wrote ‘btw remember when my physio suggested that I have that syndrome, turns out she was right. Here is some information.’. There were a few questions about treatment but other than that we just texted about normal everyday stuff until he came home from work late. So I think he was surprised that I was crying as much as I was when he came home. I hadn’t made a big deal of it. I didn’t want to burden him with it at work. That night he tucked me into bed weary from crying with the knitted bunny toy I have had since I was a baby.

The next 48 hours I spent in a weird state. Again being diagnosed was weird. On one hand I was devastated by knowing that I have a chronic illness which is going to affect all aspects of my life and I will probably always be on a bunch of different medications, particularly to manage mood and pain. On the other hand I was relieved. That I finally know why. Being told that I am not a hypochondriac or that everything just seems to be wrong with me. That I am not just clumsy or need to eat some calcium. But that there is one thing which explains everything. And then I went back to being sad because I will never be able to live a normal life. I will never have the same energy levels as other people and pain will always be there.

Then the anxiety set in. Will I be able to complete my PhD in time? Will I be able to survive the workload? When I finish will I be able to work full time? And perhaps the most anxiety provoking worry is about motherhood. How will it be coming off my medications for pregnancy? Will I be able to be a good parent if I am always in pain and fatigued?

Then I tried to look at it objectively. In reality nothing has changed. The symptoms I’ve had for years before my diagnosis are the same as I have now. I have led a somewhat normal life all this time (being a student isn’t really a normal routine), though pain, fatigue, anxiety and depression will always have an impact on your life. The only thing that changed with the diagnosis is the knowledge that it won’t go away. That it is not a matter of just getting over the most recent injury and do the rehabilitation and then be back to normal. It is not just a matter of getting used to move about again and get back into shape. It is not just a matter of getting used to having a normal routine (9-5 work) again.

The only thing that has changed is knowing that it is permanent. That whenever I get incredibly tired from nothing special I get sad and frustrated because it will always be like that. That whenever I get in pain from normal stuff like sitting at a desk for an hour or so or worse, sitting in a lecture/seminar/symposium I cry of frustration because that pain will always be there. And apparently I am now a 27 year old girl (woman?) who sleeps with my childhood bunny toy.

* I once fractured my ankle because a toddler ran into me with a bicycle and last time I sprained my ankle (looking so bad that my very talented orthopaedic surgeon said ‘I’ll be honest with you I have never seen anything like that’) I didn’t even remember hurting it that bad. I just hit it against the corner of the bed or something like that.

Hi there..

When I wrote what I thought would be the first entry in my blog, I thought it was going to be about how to get through a PhD with mental health issues. Since then I have been told that I actually have a chronic illness, which technically means that I am disabled (though I am still struggling with accepting that).

Although the blog is probably going to be more about the chronic illness aspect of it, it doesn’t change the fact that I suffer from depression and anxiety and this was my main concern about doing the PhD.

So I have decided to publish the first post as it was originally written. It’s a bit long (sorry about that). But I think it is a good introduction about me and the anxiety and depression, which affect me and many other PhD students.

– N, xx

 

Dear Reader,

First of all, thank you for stopping by. I am not sure what has led you to my page, but if it was through google (like I did before I started writing) I imagine that it may have had something to do with PhD, anxiety, depression, or perhaps physical illness. If so, by reading on maybe you’ll see that you’re not alone. Or maybe you’ll find that my situation is so different from yours that it isn’t relevant.

The truth is, I don’t know anyone quite like me. I am a sick child. I have been sick as long as I can remember. Some of it purely physical, such as needing surgery for ear problems as a toddler or an ankle, which refused to heal properly for about 3.5 years of my mid twenties. Some of it physical with a clear psychological undercurrent, such as constant tummy aches and nausea in my early teens. I got all sorts of scans and they found physical reasons, but when I moved to a different school at 16, the nausea and pain disappeared. And still some of it psychological such as cutting, suicidal thoughts and eating disorders (past) and anxiety, panic attacks and depression (current).

On a normal day I take 9 prescribed pills (4 different types) excluding pain medication, half of which manage my mood and anxiety.

As many others with physical or psychological illnesses, I have persevered and I worked my ass off on my undergraduate, volunteering part-time in my lab next to doing a full-time degree. But during the MSc my work suffered. Not (just) because my schedule was much fuller, but mostly because I was falling apart at the seams. I kept telling myself to just push through, that after that next essay there would be a bit of time to cool down. I told myself this again and again and somehow I got through it without crashing completely.

Don’t take me wrong. I handed in some work on my MSc that I would never even have considered submitting on my undergraduate. I skipped many lectures because I just couldn’t see the point in going and by the time I handed in my final essay I just couldn’t care less. I had spent waay too much money on a degree, which I didn’t care about at all. But once that final essay was handed in, all that remained was the dissertation which was due 4 months later.

However, this was when I realised that my depression was back. I hadn’t even noticed it creeping up, but it was when I tried to explain to my partner that how I was feeling didn’t have anything to do with him, I noticed that I was listing symptoms. Disturbed sleep, no joy from stuff I used to enjoy, constantly hungry but really couldn’t be bothered to eat as the thought of everything just made me nauseous, completely lacking in sex drive.. you know, the usual suspects. So I got myself to the doctor and got back on my antidepressants. But having been on them before I knew what to expect and my supervisors agreed that I should take a few weeks off on medical leave.

My aim was to take off 2 weeks. One week on holiday in Spain with my partner and one more week to get fully adjusted to the meds. Weirdly, there didn’t seem to be many side effects this time around (expect for the side effects from the sleeping pills my GP had given me). It actually felt like my body had been craving them and it was now back to normal. But, when I wanted to start back up with my work, I found that I was still extremely lacking in motivation. It was a struggle to do even the simplest tasks, like reading, so 2 weeks became 2 months.

I kept doing little bits here and there but I was mostly useless for 2.5 months. I had already been offered and accepted my PhD grant, but this summer I was close to just throwing in the towel and giving up, I even had a meeting with one of my supervisors where I told him this and we discussed ways of trying to make it work.

The only thing that actually got my through was the fact that I was scheduled to give a talk at a conference on my MSc dissertation topic. I had to get something done by then. And after giving the talk and hearing the feedback, I got a fire lit under me and felt so motivated again that I barely stopped working for the next 2 weeks while I analysed and wrote my entire dissertation. Without that conference I am not sure that I would, even now, have finished writing my dissertation.

I wanted to keep going after handing in – get more results etc. (my dataset wasn’t finished), but my supervisors told me to rest, relax and recharge my batteries so I could get through the PhD. They are both amazing and super supportive. But sometimes all I can see when I read their emails is their disappointment and that they see me as fragile (though they say nothing of the sort).

But of course, I am fragile. As much as I hate to admit it, I am. And even though I have been trying so hard to convince department heads and supervisors that I am strong enough to get through a PhD, I know that I am not. Especially since 2 days before my PhD induction the nausea and tummy ache came back after 10 years. It has now lasted 2 weeks during which I have also not been able to gather my thoughts and do the reading my supervisors have told me to do.

So I am one week into my PhD and I already feel like I am failing. And maybe more importantly, I know that I probably won’t be able to make it through the PhD, especially not without a break.

I know that I am not alone. Many PhD students crack under the pressure, some drop out, some take extended breaks, some stop caring about it altogether. But I think this is made worse because we don’t share. Because there is competition, because we don’t want to look weak in front of our supervisors (though I routinely cry in front of mine) and colleagues, because we try to power through or because of some other reason I haven’t even thought of.

Anyway, I am here to share and talk (write, really) about my process through the PhD and maybe shed some light on these issues.

– N, xx