An Inconclusive Diagnosis

So recently I was very sick. I developed these agonizing headaches that just wouldn’t go away. No matter what I did, they stayed. I have a history of migraines so I know what they are like. I have had them for many years as a result of the side effects of my medication. They come once a month, I stay in a dark room, get rid of anything with a screen or light and sleep it off. But these weren’t migraines. They were not going anywhere. The headaches were like a constant. I slept, ate, existed and worked through them.

When the doctors asked me if this felt like the regular migraines. I said to them, of course not. I would know if there were, right?

Sometimes I had a few hours off work, other times, I worked through them. It was debilitating.

Then one week, my temperature started to spike, I felt very tired. I would lie in my bed, fighting a fever, covered, shivering under a duvet in the middle of summer.

It wasn’t great. Neil would bring my meals up to bed but I would not even eat them. I had lost my appetite even when he cooked my favorite meals. Think all I had in 2 or 3 days at a stretch was cheese and biscuits.

It was crazy. I refused to go to hospital because once you are in, they keep you. I didn’t want to be kept in.

Then one Saturday I went to the Sickle Cell Society’s AGM and all I got from people was “June, you look tired”.

As if I didn’t already know.

I was sleep deprived for crying out loud. These headaches and fevers had been keeping me up at night.

I sighed.

Oleander a friend and sister, literally dragged me from the event to A&E, checked me in, sat down with me and ensured that I didn’t leave before she left. LOL.

I got into a bay, the doctor saw me and carried out a neurological assessment to rule out stroke or a TIA. Well, that was a relief. To think that was an immediate area of suspicion after assessing me scared me.

So, great news, no signs of stroke!!!

(People who live with sickle cell are at risk of strokes)

He carried out a detailed assessment and after the consultation, he said he thinks I am having tension (cluster) headaches and that I needed to stop taking pain meds such as paracetamol and ibruprofen at home as the meds could be something called over medication usage which could be progressing the headaches.

So of course I listened to him and got off the meds and of course I knew this- my temperature now spiked to 40s because I had no codeine or paracetamol to control it. So from Saturday night to Monday morning I endured a really bad fever and more agonizing headaches.

Then Monday I had agreed with Neil that enough was enough, he said “darling, you have to go in to check what this is. It’s certainly some sort of virus”.

We agreed I would show up at the day unit to see the doctor. I did, on Monday morning. I left home with just my phone, my purse and a scarf. The weather was pleasant.

When I got in, the doctor did some tests and did another neurological assessment to rule out stroke. Again!!!

She came back with my results saying, “June, you are very sick and I am afraid, we will have to keep you in”.

Fuck! I just knew it.

I had a feeling this was going to happen.

All I could think of was - ...shit I haven’t put my out of office on.

I was working between 7-9 before I left the house that morning and informed work I was heading to the hospital for a few hours and would work from home that afternoon.

As if!

The 2nd thought was I have nothing on me. I actually thought out loud and she said to me, “I wouldn’t worry about work you not have anyone who can pack a bag for you”.

I responded that I did. “My partner will, but he is at work at the moment. Works in Tooting and would have to head home, pack a bag and then head here”. That’s fine, she said. “Worse case, we will give you a wash pack and fresh clothes”

All I could think about was how much I hated being in this situation. How my poor partner has to deal with this shit. My sister who doesn’t really handle me being sick very well, including my dad and the rest of my family. The entire burden I put on them emotionally and how that affects me. It was just another situation I could have done without but life throws these things at you and sometimes, you have to sit and relax even in the challenging situation and wait until the moment passes, because at this point, there was nothing I could do within my control.

I was thinking of my meetings later in the week with potential curators for my recent creative work, a job interview I had missed, my prep for holiday to the south of France, my mentees who I had meetings with, friends who I was meant to catch up with, my sister-in-law’s baby shower that weekend, my niece’s 2nd Birthday that weekend etc etc

I was annoyed at how my body had betrayed me, how it keeps letting me down!

So many things running through my mind and all I could think of was I really don’t want to be admitted.

The picture below of me curled on my bed was the morning I was hesitant to go in. I was in that position for 20 minutes as Neil kept requesting me to try gather some strength and jump into a cab.

Oddly, it was strange for me because I wasn’t in crisis. I had no sickle pain so the thought of being sick was almost far fetched and not entirely realistic. I have never been in hospital for anything else other than a sickle crisis so this was a first.

Anyway long story short I ended up spending 8 days and a bit in hospital and doctors couldn’t diagnose what the fuck was wrong with me. My temperature spiked for a week to high 39s, blood pressure was super low, I was haemolysing, heart rate dropped, I was told there was a murmur in my heart, I was jaundiced, dehydrated, constipated, my CRP was unusually high, was in agonizing pain from the headaches, weak as hell, and just felt like death. Everything was either very high or very low. My body was shutting down right before my eyes.

Yet mysteriously, my diagnosis was inconclusive. I saw about 12 doctors in total between the oncall doctors over the weekend, to my specialists, to the acute care doctors and none could tell me what was wrong with me because they couldn’t find anything in all these gazillion tests I had. Nothing.

So I ended up having 2 lumbar punctures, a heart scan, brain scan, 3 chest X-rays, about 15 injections, several medicines, blood transfusions, IV fluids, about 20 blood cultures (for each time I spiked) and 10 blood tests all of which were torturous because I have no veins and when they managed to get a tiny vein,it just doesn’t produce blood so they have to try multiple times which was just absolutely dreadful. I really worry about my vascular access. It depresses me.

Anyway, after all said and done and the dramas (worthy of mention) of being on a ward where you just couldn’t sleep, I had no diagnosis.

I was told when I was admitted to acute care earlier that week that they were suspecting potential sepsis which frightened me because all I could think about (as dramatic as it may sound), was that I was going to die.

Everyone on the news who has sepsis dies. I was just thinking, God, I do not have a near healthy enough immune system to fight this virus.

I broke down in tears and the kind doctor held me and said “June, I didn’t mean to freak you out, it’s only suspected and whatever it comes to, we will look after you”.

They also mentioned it may be meningitis.

Oleander was with me that day. She had come to the day unit just as the porter wheeled me to the ward to be admitted.

So in all my tribulations, they didn’t know what was wrong, I had no treatment for the virus because the doctors said they couldn’t treat me blindly as all the results were coming back negative. So as most viruses tend to have a cycle, this very serious virus which was suspect sepsis did its full cycle and left my body.

So just when I thought my immune system was non- existent, my body healed itself with a bit of water and blood. But also with the prayers of my family and loving friends.

I get love.

Doctors weren’t keen for my to jump on a plane the week I was discharged but I did, - nothing stops me from traveling except if I am in a near death situation or in excruciating pain. It’s the one single thing that gives me joy and inner peace- Getting away to somewhere new.

“I have to travel”. I told the doctor. “I am going away with my partner and his family and it’s been booked for ages so I can’t miss out on all our plans. It’s my summer get away”.

Anyway she said that’s fine, if you have to go and you feel well, that’s fine.

But she insisted I had to call her when I was in France because they were still worried about me. Infact she asked me to see her before I travel and then ring her when I am there. I was happy with her plan. We both were.

I like my doctor, she is good peoples. I have genuine love for my specialists team.

So I ended up flying to Nice with a lot of help from Neil, helping with getting settled at home, packing and airport logistics.

Everyone welcomed me with kindness and warmth. We were about 12 of us. Some from California, Paris, London, Scotland. Such a great group trip.

So I enjoyed my summer break in a really traditional Provence villa (with rustic charm, I must add) in Bargemon, a beautiful Provence medieval village north of Nice.

Oh I so loved it. It was out of this world.

The headaches disappeared, I glowed, caught up on sleep, had some sun, ate traditional Southern French food, drank Provencal rose and reds, spent time in the pool, relaxed in the garden, explored the village, drove around neighboring villages, attended the local festivals, explored local art and culture, went wine tasting, horse riding, visited farms, got some fresh Provincial lavender and herbs, met new people, did all the beautiful things I enjoy doing when I visit the lovely Provence. And one day, I took a very deep breath and patted myself on the back, asking myself- how do you fucking do this, Anwuli?

I also rescheduled all my meetings and attended them because life only paused for a few days but nothing stopped me from getting my confidence off the floor and forging ahead with my life and my passions,

I wrote my morning pages daily in hospital even when I felt like shit, I worked with my younger brother to produce a beautiful audio documentary and reflected on lessons I had learned from this setback and this crazy episode - one of which was- I needed to cut back, have a strategy that works for me work wise, time wise and health wise and came to the conclusion that I needed to cut down my working hours and work part time, that I needed to learn to rest, to genuinely rest and not do fuck all and to make more time for the people I love.

So my family and Neil were core to my recovery and I can’t express my love to them enough. They are my constant.

But I cannot forget beautiful friends in my life:

Oleander, this beautiful woman who just loves wholeheartedly and selflessly, who pushed me to get help even when I was braving something quite dire, she was there for me the whole time. I love her so much.

Donna and Ella my darlings- Donna visited me, checked on me daily, got me things to occupy me in hospital, made sure that I was ok, sent me a beautiful bouquet of flowers when I got home, even when she was dealing with her own stuff, she was there, ever so present. I love her.

Then Daniel, my fam, my dearest, darling friend drove all the way from home a little late one night to spend time with me and walked ages to find a shop that sells shortbreads because I had a mad crave for them. He checked on me daily and said prayers for me, too much love. He has been there for me for nearly 20 years. True love.

Sandra, nnem (my beautiful sister) who although wasn’t aware initially was always looking out for me from afar. This woman is love.

Micheal and Whitney my friends who I work with to mentor kids, they checked daily. They have become my family.

Mark, my love, my eternal love, everyday he would leave me voice notes and send me positive vibes, stuff that made me giggle even when I was going through shit on my hospital bed, I would read his memes and laugh out loud. And he would promise me the world, if I got out well.

I am ever so grateful for your love and kindness and compassion in a time of fear and vulnerability and to all my other friends who didn’t know I was ill but reached out a lot when they found out, I still love you too.

My lovely medical and nursing team fixed me and I am back. So let’s try look after the body and stick to the script.

June, remember your letter, let’s keep doing this thing called life.

Have a great week dear friends and keep doing this thing called life, it’s beautiful. X

My lovely medical and nursing team fixed me and I am back. So let’s try look after the body and stick to the script.

June, remember your letter, let’s keep doing this thing called life.

Have a great week dear friends and keep doing this thing called life, it’s beautiful.

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