My ADHD Diagnosis Journey

I have always been different, no matter how hard I tried to fit in.

When I went on holiday with a friend to Vietnam and Cambodia, I realised something was interfering with the trip. For some reason I found it really hard to organise myself and to avoid forgetting things. What was wrong with me?

At 14 I had the maths age of an 11 year old and the verbal reasoning score of a 16 year old. Maths was boring, so I just didn’t pay attention and doodled or daydreamed instead. The educational psychology assessment meant that I did not have to do Design and Technology GCSE. Before I was exempt I nearly broke a sewing machine needle when I got distracted, and made muffins without dough (inedible) as I couldn’t follow the steps without getting distracted.

I tried to do a nursing degree, but it took me an extra week than it should have to learn leg bandaging, after seeing two different techniques. After this I was diagnosed with a “non-specific learning difficulty.”

I got distracted during the assessment by a noise in the waiting room, and felt maybe I hadn’t performed well because of that. I got withdrawn from the nursing degree as I was “not consistent and competent enough”. This was just after I had seen a disability assistant, who said that with strategies I could learn what I needed to. The Royal College of Nursing said I had suffered discrimination and were willing to take the case further, but I realised that I could not learn the practical skills and was unsure why. I was not stupid, so why had I been trailing behind my course mates? As my personal tutor had suggested I had autism, like her son, I went to the GP.

I got referred. Back in 2018, the NHS wait was a mere six months. It’s now four years.

The consultant psychologist asked me to tell her about my life for an hour. She then said “I wouldn’t worry, most of my patients with ADHD [Attention Deficit Hyperactivity Disorder] struggle to have relationships and hold down a job, so you’re doing well.” She signposted me to a local support group. I apparently did not have ADHD badly enough for a diagnosis. I also did not have autism.

I went to the group, and for the first time, I sat in a room full of people where I felt I was on the same wavelength and I could understand them. We talked fast, we had lots of ideas, we were emotional, we were interesting. Here, for the first time, I fit in. They spoke of being let down by the NHS and their struggles firstly to get assessed and then to get medication and to get changes to this. They spoke of mistakes and failures in their lives that they felt had been caused directly or indirectly through ADHD, and they sought help in managing the chaos.

ADHD continued to affect me, but I did not do much research, as I reassured myself that the NHS had told me I did not have it badly. It was a spectrum and I was at the mild end of it, so I was fine. My boyfriend and friends disagreed. I had gone from my mum organising things for me and finding lost property to my boyfriend doing that. I was so frustrated – why couldn’t I do this like most of the people I knew? What was wrong with me, and what on earth could I do about it?

After some research, I realised that I had not been adequately assessed on my life before the age of 12. This meant that I could not have been diagnosed with it, as you had to have it before then. I asked the GP for a reassessment, explaining how it affected me on a daily basis. However, weeks later, they informed me that the reassessment request had been declined due to insufficient evidence of ADHD. I was so frustrated, upset and angry. So I just had to keep struggling? I was fed up of being distracted, emotional and forgetting things.

I could not afford a private assessment and I was lucky that my boyfriend could. He shelled out £1200 and within weeks I had an appointment with a psychiatrist. There were no private appointments in my city, so we had to travel to a city nearby.

Before the appointment, my mum and my boyfriend completed a questionnaire and I was asked to bring school reports. “Your boyfriend scored you 9/9” the psychiatrist explained, “and your mum scored you 4/9 for your childhood, which is one below the threshold for diagnosis. However, it is possible that your parents compensated for any difficulties during that time, and so they might not have been as noticeable. Have you brought your school reports?”. She read through every single one up to the age of 12, nodding and making notes.

“There’s enough here for me to score you 5/9 for your childhood”.

She then asked me about my life and how ADHD affected me. At the end of the appointment she confirmed that I had it, and I proudly announced it to my boyfriend in the waiting room. We had finally come to the end of the assessment journey.

I feel that I have been let down by the NHS and as a result I have had years more of difficulty due to a flawed assessment.

The BBC Panorama programme on ADHD has received 1800 complaints and counting. A reporter who was told by an NHS psychiatrist that he did not have it went to three private clinics, where he was assessed by a pharmacist, a trainee nurse with a supervisor, and a psychologist, who was more interested in playing with her hair. In my opinion only a psychiatrist should be able to diagnose patients. Unfortunately due to staffing, the NHS as well as private clinics have trained up psychologists, nurses and pharmacists to deliver the assessments, and from what I saw on the programme, they were not of good quality. The clinicians were asking leading questions. But the reporter was also answering as if he had ADHD.

I’m glad that I got assessed by a psychiatrist and that the process was thorough. I feel sorry for those who have shelled out and have been let down. I also feel bad for those who, like me, were let down by the NHS. I am also disappointed that patients are not offered CBT therapy for ADHD, to help them manage things such as emotional dysregulation. All diagnoses should come with support for patients to understand the condition, how it affects them, to come to terms with it, and to work out how to mitigate it. It is not simply enough to say right lets put you on medication.

The reporter’s programme and article was unbalanced – it only included how the private clinics had got it wrong. The NHS psychiatrist on the programme then wrote a more balanced article for The Guardian where he explained that many NHS patients had resorted to private assessments due to waiting lists, and that there were undoubtedly many sound diagnoses from the private system.

The problem is that the BBC article and programme discredited the private system to the effect that two family members and a friend have now suggested I don’t have it. What’s ironic is that they’ve all seen the impact it has on my life, and theirs, as they reunite me with items left at theirs, or put a “phone, keys, wallet” post-it on the door…

My Ectopic Pregnancy

Around one in 90 women in the UK experience an ectopic pregnancy, and most of those take place in the fallopian tubes.

Unfortunately, in the unlikely event that you do get pregnant with a coil, there is a raised risk of an ectopic pregnancy, which means the embryo cannot grow.

I had my second copper coil, otherwise known as an Intra Uterine Device, in 2018.

I had come back from an epic hike round the Pyrenees – a mountain range in the south of France. We had driven down there to explore the area and walk the five day “Pass’Aran” route.

When my period did not arrive, Google reassured me that this could be caused by low progesterone (hormone) levels, which could be caused by “extreme exercise”.

Then I had sore breasts, and once again Google said this was due to low progesterone levels, but as I was also feeling a bit more tired than usual, I checked with a pregnancy test.

Pregnant.

It didn’t say Not Pregnant. It must be a mistake.

1-2 weeks (it confusingly showed 2-3, but this meant weeks since conception which the leaflet explained was 1-2 weeks pregnant).

So it was early. I walked around swearing, head in hands. What was I going to do?

Did I want it? It was so inconvenient – we were in the process of buying a house, my boyfriend works away, we were going to New Zealand…now was not the time.

But I could not kill something that was both of us and I could not kill something I really wanted. Yes it wasn’t the right time but when was?

I didn’t have time to process, I had to get to work.

But I had to get dressed first and find the few bigger clothes I’d bought from another time I temporarily gained weight.

I wondered who to tell. Should I tell anyone but Jonny?

Maybe Jonny wouldn’t want it and then there’s the shame of abortion, so I wouldn’t tell anyone. I didn’t want anyone judging me.

I couldn’t keep it in and I needed emotional support, so I confided in a close friend and it really helped. Her cousin had had an ectopic pregnancy it turned out, and they had also found out at six weeks. She had her fallopian tube removed, as the embryo can damage it. At least we are born with two.

Before seeing the GP I wanted to talk to Jonny – then I could ask for an abortion as well as a scan if needed. He was shocked and froze but he wasn’t annoyed or upset as I expected. He said we should see what was going on with it first, before we made a decision. Ever the pragmatist.

“Is that the only one you did?”

“No, it’s the third.”

“Oh………Is there anything else that could make it test positive?”

“No Jonny!”

The next morning I contacted the GP first thing and filled in an online form. Almost immediately I was text with the first appointment of the day. I explained how I’d started spotting instead of a period and then how my breasts had become sore and that as of Thursday night, it looked like I was having a period.

The doctor examined me and referred me to the Gynae Accident and Emergency department at the local hospital for a scan (my second time as an emergency patient in a year). She said to make sure Jonny was with me and to tell Gynae if I had symptoms that would suggest even more of an emergency, like pain or heavy bleeding.

After an hour of waiting at reception, the nurse did a safeguarding and general information interview. “From your dates you’d be six weeks pregnant” she said.

She took me round for a urine and blood test and after waiting for ages, I had a scan.

I was excited as I held my boyfriend’s hand down the corridor, wondering how he’d feel when he saw our baby.

“Do you want me to show you the embryo if I can find it?” the nurse asked.

“Yes please” I replied. “Jonny, do you want to see it?”

“Yes” he said, looking both excited and confused.

I had read that an embryo of six weeks sent out an electrical signal that sounds like a heartbeat on a scan. It would be the size of a pomegranate seed and look like a tadpole.

I waited to hear the signal.

There was silence and a lot of prodding. It was uncomfortable but didn’t hurt.

“I’m very sorry to tell you this, but I can’t find a pregnancy in your uterus. I can confirm that it’s likely to be an ectopic pregnancy, which means it’s growing outside of your uterus.” I was devastated.

“It’s growing next to your ovary.”

“Next to the ovary?? outside the uterus?? not on the ovary then??”

“Do you want to see?”

“Yes please”.

The nurse rotated the screen and there was the dark space of my ovary and then a dark space next to it that looked like a comma stuck to my ovary. I couldn’t make out any details as it was grainy.

“I can’t be certain, but that may be the sac there.”

It was so strange to see, but it made it feel more real and I was glad for that, as it helped me to accept that this was really happening, and I needed to get my head around it.

Not only was I pregnant, but it could not continue. I knew logically that was good as it was the wrong time for us, but it didn’t make it feel any better emotionally.

How? why? why me?

I then waited two more hours for the blood test results.

Jonny came up with lunch. I felt sorry for the other pregnant ladies, who had also been waiting hours. One woman had an overweight partner who was snoring loudly and continuously falling off his chair. He hadn’t got her any lunch, but if he did there was a risk that he wouldn’t hear what the nurse had to say. I wondered why they didn’t have a ticket system, like they did with blood tests.

The doctor called me in, finally.

He explained about the pregnancy hormone they had measured for. I replied “oh yes, Human Immunoglobulin something…”

“yes, that one. It’s at 500. We need to wait and see what happens, because there is a still a chance that you are pregnant in the uterus and we can’t see it, as it is so early.”

“But I thought there was a mass?”

“Yes, but that could just be a cyst.”

“So we will have you back in in two days to see what has happened. If it doubles it is likely to be in your uterus. If it doesn’t then we can confirm an ectopic pregnancy.”

My treatment options were:

1. Expectant management – waiting to miscarry (and hoping I didn’t die from a ruptured fallopian tube).
2. Have an injection to stop the cells growing, and make them reabsorb into the body (genius).
3. Have my fallopian tube removed with keyhole (laparoscopic) surgery (also genius, but less chance of getting pregnant in future).

I felt fortunate that as of the 1980s, option 2 had also become available. The drug was previously only used in cancer treatment but has no bad side effects. Also, keyhole surgery has drastically reduced the time you need to spend in hospital – you can leave the same day instead of being on bed rest for weeks.

Google informed me that 500 HcG was the average reading for five weeks of a pregnancy in the uterus.

Dame Laura Kenny, the Olympic medal-winning cyclist, has recently spoken out about her ectopic pregnancy experience and this is why I’m blogging about it – it helped me to read about other women’s experiences.

I was relieved that hospital was done with. I had a missed a day of work and I was emotionally drained.

When I got home I lay on the sofa for a while, but life goes on, I had a night out with the netball girls.

Turns out you can’t enjoy alcohol pregnant – it just made me feel sick.

And so did a Dr Pepper can and a frangipani almond croissant. I didn’t like salad before, but now I want lots of dark leafy green salad and steak. Your body craves what it needs.

Best to act like it isn’t happening! I’m at the back putting.

ORIF recovery – my metal elbow

I am now enjoying being four months post-op. In the last two months I have made so much progress.

I can now tie my hair up and wash it properly.

Hydrotherapy and intensive physiotherapy has enabled me regain a “functional” range of movement of 100 degrees, considered to be enough to perform daily tasks.

Hydrotherapy was my favourite appointment – a warm swimming pool with just your physio and one other patient and you did slow and gentle stretches and resistance exercises with various props.

I also have a thermaplastic splint fitted to wear at night, which I am told would cost £30, but is free thanks to our NHS.

I have just been allowed to lift up to 5kg. I have finally been allowed to put a little weight through the arm, like doing standing press ups.

I am not yet able to go on long bike rides or run on unsteady ground because the muscles in my bad arm are weak which makes me unbalanced when I’m moving.

I am now allowed to use the physio gym with its padded exercise bike, treadmill and basketball hoop to help with conditioning, building and strengthening muscle.

The therapy I am receiving is outstanding. I have gone from only being able to bend my arm 90 degrees to being able to flex it fully. I am now just 10-20 degrees off full extension as well.

My arm still aches or stings if I lift anything too heavy or rest it on a desk without having regular breaks. The tricep exercises hurt quite a lot – that muscle hangs loose, but the bicep is coming along nicely and after three weeks of being able to put weight on it for the first time, I already feel stronger.

I am continuing with daily exercises and practicing goal shooting when I can, as I am determined to get back to playing netball as soon as possible, hopefully back to my position as Goal Shooter. I also really miss climbing, but it will be another few months at least, I am told, before I can be discharged. I need to build up my triceps muscle and be able to fall safely. Hopefully it won’t be much longer now…

The Traumatic Trauma Ward

Two cheerful young men in green scrubs came by in the early hours and introduced themselves as orthopaedic doctors.

I said “hi, can I have some morphine please?”

Codeine was not making any difference, there was an intense burning pain in the joint and if I moved my arm it was so strong I would cry out. Then there was the constant ache.

They exchanged glances. “Yes we can sort that. We have had another look at your X-rays and we think you probably don’t have an open fracture after all, so your operation can’t be prioritised. We might send you home for a week or two and bring you back in for the operation.”

I thought about trying to manage the agony with codeine.

“I want to stay in hospital until the operation.”

The medics acknowledged this and left.

I needed the toilet but I was on my own. I wasn’t prepared to pee myself and I couldn’t reach the buzzer.

Fortunately two support workers down the corridor heard me scream from the shooting pain of my muscles pulling my fracture apart, and one had to help me off the toilet.

After that I finally got morphine, but then a high-pitched voice jarred me awake. It was coming down the corridor accompanied by the squeak of wheels.

Lily was an advocate of LGBTQ rights, she said, and she wanted to be a counsellor for the LGBTQ community because one had really helped her.

She had been using a pedestrian crossing because the traffic lights had changed to red. A taxi had sped through and over her, breaking her back and legs. The driver had got witnesses to agree with his side of the story, that the lights were actually on green.

When she was not telling everyone about it, she was moaning in agony.

I was kept nil by mouth the next day, so I missed breakfast and lunch.

In the morning I waved goodbye to the smiley staff who had helped me, as I was wheeled out of the Theatre Recovery Unit and onto the orthopaedic ward. I hoped it would be quieter. It wasn’t.

The orthopaedic ward was larger and open plan, with a blocked dirty toilet and one shower serving 12 patients. The spare toilet and shower were both broken. Unlike the Theatre Recovery ward, it was usually fully occupied and half staffed.

My four day neon hell of noise and pain had begun.

It was Sunday morning and a woman was being gently and firmly reassured by a nun.

Next to her was 88 year old Brenda, who was visited by her son and the two laughed together. She was outspoken and her bright eyes took everything in. She beckoned me over and we had some good chats. She had survived breast cancer and then she had had a fall. She said she would probably die soon. “You seem pretty healthy, I don’t think so” I said. “Oh love” she smiled, “I’m not afraid of death, I know I don’t have long left, that’s just how it is. My husband passed eight years ago so I don’t mind, I’m ready. I’ve already survived breast cancer” she said proudly.

The table was put on the side of my broken elbow, so I could not reach anything and no staff were available. They had even put the call bell out of reach. I lay there looking at the clock, counting the hours until my boyfriend would break the monotony.

Finally, my first meal of the day was served, a flavoursome beef curry. My boyfriend brought home-made banana cake for dessert and it was so comforting to see him.

He brought in my medication which I had not had for two days. A nurse had not arranged it as she promised, when she refused to let him bring it in onto the Theatre ward.

Night fell and so did the staffing levels. Once again I was without morphine for hours and I couldn’t help making a noise about it, it was the only way of processing the mental stress of being in constant agony and helpless.

I apologised to my fellow inmates as I groaned through the hours, waiting for two nurses to be able to sign off the only thing that would let me sleep.

I played a pain management meditation and calmed down as I watched the clouds lighten. Pain was part of life, it was temporary and it wasn’t always a bad thing. I shouldn’t resist it or be worried about it.

A bed pan was brought but I somehow wet myself and an exhausted zombie nurse had to change the bed. She said how she was on her fourth or fifth 12 hour night shift.

The closest patients both had dementia, one lovely lady was unsettled by my moaning and repeatedly asked if I was ok. The woman opposite repeatedly asked for help even though she didn’t need it. Flustered staff checked and eventually she was ignored. This seemed to increase her harassment of them.

When I finally got morphine I was still in too much pain to sleep, so I got the nurse to get the doctor. Finally, a girl in her 20s sympathetically doubled the dose so I could finally drift off. As the dosage increase hit my system I suddenly vomited, and then spilt some on myself putting the bowl on the table. I had to sleep in it as no one was available to change the bed again.

Maybe I would get surgery tomorrow…

A Sharp Brake

Bluebells illuminated the forest floor, birdsong reverberated, bright green leaves curled round us and treecreeper birds hopped up to the heavens as we cycled through the woods. Abdominal cramps slowed my progress up a disused side road leading up to the main road.

Years of temperature changes and heavy rains had carved a ditch up one side. The concrete underbelly had been exposed, jagged rocks protruding like blunted shark’s teeth.

Having made it to the top I admitted defeat. “Go on, have a nice ride” I said, “I can’t manage it”. My boyfriend protested, but accepted it and I rolled back downhill.

I should get off and walk, I thought, the road was so uneven. But my suspension would take it.

Towards the bottom, I was speeding towards the ditch, so I gently squeezed the brakes and skidded. Abruptly, like the wheels, time accelerated. Instinctively I braked too hard as I slid, catapulting myself over the handlebars. I was aware of flying and saw that my arm was held out at 90 degrees, protecting my head. I shut my eyes and braced myself for impact.

I was rolling onto my left elbow.

An overwhelming burning sensation had doubled me over. It was impossible to tell where it was coming from, my brain would not compute.

I wondered when someone would find me. I tried to get up but my body would not allow it. Putting weight on my cut right elbow made me scream, so I let my forehead support my weight so I could see whether anyone was coming down. At least it wasn’t my writing hand.

I decided to keep screaming, it was comforting to think that somehow my boyfriend may hear me. It also helped to slow my breathing down. My fitness tracker watch somehow had not been smashed and my pulse shot from 80 to 130 beats per minute, as my body trembled in shock, my temperature dropping.

After the second bout of screaming, my boyfriend blurred into view, jumping off with the bike still moving, wide-eyed.

Seeing my position and pain, he said “we need to call an ambulance.” My rational brain woke up. “My phone is in my bag” I croaked, struggling to speak loudly.

Our first Good Samaritan stopped, a tall, middle-aged man wearing glasses. My boyfriend did not have his phone and had not processed what I had said. “Does he have What Three Words” I asked. Incredibly, the stranger had the GPS application.

My boyfriend put me on the speakerphone and in between shrieks I answered. I was warned that an ambulance could take up to three hours.

They apologised, that was the non-urgent wait time as my life wasn’t immediately at risk. I wondered whether I would eventually pass out in agony.

My boyfriend jumped back on his bike to get the car.

Then Adam, my second knight in shining armour, rode to the rescue. He whipped out a full first aid kit, keeping me warm with a silver blanket and a thermal coat from his backpack.

“Yep, that looks broken” he said, and helped me to shuffle off the road on my bottom so I could rest against the wall.

With his encouragement I dared to extend my elbow slightly so it was supported on my helmet. The burning, pulsating sensation was increasing and I was glad that this kind man was keeping me company.

Distracting me, he told me how he had been a mountain bike guide for decades. He loved the outdoors. If I had not braked as hard I would have been OK, you have to let yourself skid.

My boyfriend arrived about 15 minutes later and we stashed my bike in a cottage driveway.

Every bump and corner caused strong shooting pains. The full waiting room of patients stared in horror as I staggered into Accident and Emergency like a zombie from Shaun of the Dead, my bruised and swollen elbow dangling out.

Administrators put me to the top of the queue and within minutes I was being checked over by a friendly triage doctor.

As she helped me into a hospital gown, I asked “it’s just a standard break isn’t it?”

“I think that’s optimistic.”

“They can just put a pot on it and send me home can’t they?”

“Again, I think that’s optimistic” she smiled.

“Go on, what do you think it is?”

She winced at my bulbous hinge joint. “I’d say it’s an open fracture, I don’t think you’ll be going home tonight.”

“Oh.”

We waited about an uncomfortable hour for assessment. I could not bend my elbow enough to sit down, so I was glad my boyfriend was there for me to lean on and he put a comforting arm round me. The patients sat in silence, until a man walked in, cheerfully telling someone on his mobile phone how he had sliced the top of his thumb off whilst preparing dinner.

An intact elbow for comparison.

The X-ray was interesting, it still looked like an elbow, until the medic pointed to where the olecranon, the funny bone, had slipped, the internal injury and the air that had infiltrated the joint.

A nurse tried to lift the elbow to put a pillow under it and ran off after I screamed, sending medics running to my aid. “Open fracture” I explained, they nodded and left.

WARNING: GORY WOUND

Then it was time for a temporary cast. I would not lie down as it increased the pain, so they made an exception for me and started it with me standing, then gave me gas and air as they urged me to get on the bed. I experienced a powerful bout of nausea followed by nearly blacking out. “It worked” the nurse said “or that would’ve really hurt.”

There was a panel of medics in scrubs looking at computer screens in front of me like traffic control.

Woozily, I slowly hauled myself up and asked a nurse where the toilet was. “I’ll show you when I’ve finished this”, she replied. Then she conferred with another nurse and I blearily followed that woman past resus until she sat down at another A and E ward.

“Sorry, I thought you were showing me where the toilet was”.

“Er, no” she responded, completely bewildered, “you’re best off going back”. After she pointed me there I got lost again, walking into “resus”, past people gasping for breath, staring wide-eyed at the ceiling. This was more intense than my holding area. It was a relief when I bumped into the cast lady.

“What are you doing here?” she asked kindly, and showed me to the toilet.

It took over three hours to get a bed. The Theatre Recovery Unit was a long ward with many rooms. Mine was only half full. The nurse, Joy, was either elsewhere, chatting about her recent holiday with support worker Gloria, or telling demented Doris to go back to bed. Doris would then get up again, preferring to twirl a chair at the nurse station.

I smiled at a bespectacled middle-aged lady opposite and she just stared gloomily back and asked Joy “can I go home tomorrow?”.

After being kept “nil by mouth” pending the “highly unlikely” possibility of surgery, I was finally given a ham sandwich for dinner at 10.30pm, when I begged for it. Maybe I would get my elbow fixed the following day…

A Grave Illness

Not everyone gets the above symptoms but these are some of the only visible signs of the illness.

Most people have no idea what Graves Disease is. Neither did I until I was diagnosed.

I was hoping it was thyroiditis – a temporary inflammation of the thyroid.

Graves Disease is an autoimmune disorder where your immune system attacks your thyroid gland, causing too much thyroid hormone to be produced. You can find out all about it in this video.

What you probably don’t know is that this little butterfly-shaped tissue in your neck controls almost every organ in your body and its processes.

At first, I wondered whether I had lung damage from my Covid-19 experience in April.

I rang the GP and she asked me to come down to the surgery that day. I had to use a walking stick as I was so tired going there that I thought I would faint. I was breathless and tired, sleepy and my heart was pounding.

The GP came out to meet me at the staff entrance in full Covid kit, but she soon relaxed.

“I’m pretty sure you don’t have Covid” she said. “You don’t even have a cough and your sats are fine.”

“I’m so sorry” I said, “I didn’t want to waste your time”.

I had had an ambulance called for me in June when I thought Covid was coming back and was breathless and coughing. I didn’t end up going to hospital to get it checked, but I know now that it was Graves rearing its ugly head.

“Lets just check your pulse. Stand up….sit down. She frowned.

Stand up again. Ok, you can sit down. Sorry can you stand up for me one more time?”

The doctor was still frowning.

“No, there’s definitely something going on. Your heart is racing. When you just stood up, your heart rate jumped to 130, then 105 the next time and 90 the third time.”

“90 is pretty normal isn’t it?”.

“90 isn’t bad but it shot up to 130 when you first stood up, even though you’ve been waiting, what, 15 minutes?”

“Yes.”

“I want you to have a blood test.”

I was put on a beta blocker, propanolol, which slows your heart rate down. If your heart rate is high over a long period of time it can cause an arrhythmia, which can eventually lead to heart failure.

Then I got the call. “It’s highly likely you have Graves Disease“. This is known in Europe as Basedow’s Disease. About 1% of the population have an overactive thyroid, of which about 80-95% of them have this caused by Graves Disease.

I felt exhausted and had dizzy spells. After just a walk I would sleep for an hour or two and yet I would be wide awake at night, sometimes taking until 6am to finally fall asleep. I read that it’s because the disorder overstimulates the nervous system. There was plenty of research about an underactive thyroid, but not much about an overactive thyroid, despite the fact that in rare cases it can kill you. This is known as a thyroid storm.

It took two weeks to get the medication I really needed – Carbimazole. This decreases the elevated thyroid hormones in your blood.

I had to ring the hospital or the GP regularly to chase it. I was told to double my dose of Propanolol. I then started getting even more tired and was mostly in bed, apart from short local walks when I had a brief respite from the jetlag tiredness. Kalms One a Night helped me sleep, and valerian tea.

I got my neck and eyes checked, as Graves causes eye problems in 30% of patients. That was fine as expected.

The other conditions that may lead to hyperthyroidism (an overactive thyroid) are nodules – lumps that affect thyroid function which is mostly seen in older patients.

According to internet research it will take 3-8 weeks for the Carbimazole to work.

I bought a “pre-payment” prescription certificate. This means that instead of paying £115-200 a year I instead pay £108. Those with an underactive thyroid gland get their medication for free, so there is a petition asking for equal treatment rights.

You have two treatment options after your course of Carbimazole is complete, but if you choose one, block and replace, your treatment is free. This is because the additional medication for this, Levothyroxine, is a synthetic hormone replacement for those who have had their thyroid gland removed – it has to be taken or the patient will get ill.

https://petition.parliament.uk/petitions/553013

On the 19th February I will have another blood test and then the level of thyroid hormone in my blood should be down to normal levels. Once I stop taking the Carbimazole I need to wait two years to give blood. I am not sure why it takes so long to be able to donate again.

An aunt has Graves Disease and the endocrinologist (a specialist doctor) told me that it is more likely if you have family history. She developed symptoms after she had her first baby. High levels of thyroid hormone in the blood can pass to the foetus and lead to low birth weight, prematurity and miscarriage.

The gene can apparently be activated by severe stress or trauma, pregnancy or bad illness according to Dr Google.

I am convinced that having Covid in April triggered a gene for Graves Disease. Months later I started getting tired and breathless doing my normal exercise again and I even had mania – abnormally high energy levels. One day I went for a two hour hilly bike ride. I was then awake most of the night as I wasn’t tired. This happens because energy levels initially rise at the onset of hyperthyroidism.

There is a small study of about 200 patients that has linked thyroiditis to Covid, as an infection in the upper respiratory tract (the throat) is close to the thyroid in the neck. You can feel the gland move if you put one hand either side of your neck and swallow.

You don’t have to have the gene to get Graves Disease, it can happen to anyone. It is more common in women and usually develops between the age of 20-40.

If you have a tremor (shaking hands) and you get breathless with activity, or you have any of the other symptoms on this list, ask your GP for a blood test.

If you have an overactive thyroid, you can join the BTF Hyperthyroidism Facebook group for support.

Updated 03.02.2021

My First (Possible) Coronavirus

Me as a (possible) Covid-19 patient, day 2.

Before I got it, I was curious about what it involved, what I could expect.

One Friday I got a sore throat. I took a Strepsil and forgot about it.

That evening I still had it, so I popped another Strepsil.

On Saturday after breakfast my boyfriend and I were sitting, looking at the rain and wondering what to do. My boyfriend went on the laptop and I was on my phone.

I started coughing and had a drink, maybe that would help.

It didn’t.

The coughs were continuous and dry…

After a while I started to feel tired and went to sit on the sofa, hoping that would help.

It didn’t.

I started to feel exhausted. My boyfriend insisted that I was “putting it on”.

“I’m going to bed” I announced suddenly, and he looked up anxiously. It was an effort even to sit up.

It had hit me out of nowhere, what was going on? I felt like I’d just got off a plane from the Philippines again, heavily jet-lagged.

I lay down and that was it, I was in bed for the next five days, apart from some sunbathes in the garden. I was able to do this because I had several hours each day where the coughs eerily disappeared, so I felt less tired. I hoped that my body hadn’t stopped fighting it, whatever it was.

I begged my boyfriend not to go to work but he did and I was alone.

I had to drag myself out of bed and rest regularly as I hauled myself downstairs, leaning heavily on the banisters as if I had rapidly aged overnight. By the time I got back up I was wheezing so much I felt like I was breathing through a straw. Sometimes I had to cough to breathe, I was so constricted, and that was quite alarming. But the advice I saw online was that you only needed to go to hospital if you felt tingling in your fingers or toes or had blue lips, and it wasn’t that bad. My extremities were still being adequately oxygenated and I reminded myself that I didn’t have a temperature, so it was only “mild”.

Pull yourself together, I told my inner child. No need to be a drama llama.

My chest hurt as I coughed roughly every ten minutes for three days. On the second day, my friends dropped off a care package and it gave me such a boost. I was able to talk to them from the upstairs window. I fortunately had a welcome break from the symptoms at that point, another weird window where it felt like I wasn’t ill.

On the fourth and fifth day the fatigue worsened and I was quite weak. Once I couldn’t even turn over in bed. I got tired having more than one chat on the phone each day. I am usually someone that is lively and energetic but this had really floored me. The last time I had been that ill was when I was seven and laid up for two weeks with pneumonia.

On the sixth day I was feeling better until I had a shower and had a dizzy spell. But I was no longer coughing all the time so I had more energy. I was able to stay up and out of bed until 3pm, when fatigue bowled me over, literally.

So I spent a total of three days coughing, five days in bed and 11 days later I am finally feeling more human, and have put my first clothes wash on in two weeks.

I don’t qualify for a test, so I do not know if that was the dreaded coronavirus.

What helps?

Vicks vapour rub is all you need if you have it mildly, the essential oil vapours are helpful. Lying on two pillows allows you to breathe easier too. Paracetamol helped my boyfriend lower his temperature, it brings it down by half a degree. Please note that I did not use any extra toilet roll.

Keep your immune system supported with exercise, sleep, fruit and vegetables and you might only get “mild” symptoms too, if you get it.

Even though I can go out again soon, I will take more time to rest first, as I do not want to get another infection while my immune system is recovering. It will take me another week to get better whilst I replenish energy levels.

How did I get it?

I had gone shopping 12 days before in a busy supermarket, but that seemed unlikely to be the transmission event as it was so long before.

I may have been infected over the Easter weekend when we went out every day on the bikes. Some cyclists had passed right by me, breathing heavily. But that was an unlikely source too. It was a mystery.

I had been so careful – wiping and spraying everything from the supermarket, washing hands on entry to the house, staying away from people, but it had been useless.

I am just relieved to be through the worst and to have got off lightly. I know someone that has sadly passed away from it, so I am well aware that not everyone is so lucky.

In memory of those who didn’t make it.

Liverpool

Friendly locals, a busy nightlife and intimidating seagulls sum up my two night stay in Liverpool.

One beady-eyed bird even stole a sandwich from a sleeping homeless person and stabbed it eagerly with its long yellow beak.

I did not have chance to visit one of the many museums, such as the International Slavery Museum, but I had chance to sample the nightlife and it was much better than my home town.

Even though it was a week-day, there were plenty of people of all ages in the bar, listening to a guitar player sing. The Cavern Club was small, built with bricks and underground. Opening in 1957, The Beatles played there 274 times. Queen and The Beach Boys also played here, amongst many other famous bands. However, the acoustics were bad and amplified too much.

The nicest part of the city centre was Albert Docks, a regenerated collection of former warehouses, with Holiday Inn Express being the best place we stayed there. I had a view out on to the dock in my room and at breakfast, which made up for the stale pastries.

 

 

 

Horse-racing and Jess Glynn

I’ve never been to horse racing. I’ve seen greyhounds tearing round a track after a fake hare, but never super stallions.

It was a multi-sensory experience, the wind of the pack, the smell of their sweat, the thunder of hooves and the sight of their beautiful muscular bodies.

Both my bets lost – it turns out that gambling on the one tipped to win is not a good idea. But we enjoyed a bottle of prosecco and strawberries – a bottle the same price as three glasses, so it seemed the best value decision!

After we watched Jess Glynn. She had powerful soaring vocals. It was for my birthday and it was nearly ruined by terrible security decisions. I went to the toilet before the start of it and the queue was so slow that by the time I got back, Jonny’s area had been cordoned off and the heartless guard wouldn’t let me pass.

Everyone was trying to get in. The staff had made the main area near the stage look like somewhere exclusive, so of course crowd psychology dictated that everyone wanted to get in. I almost got crushed against the barrier and it was difficult to get out. I remembered Hillsborough – football fans getting crushed to death. I saw how easily that could happen, just from one stupid decision, to pen in an uncontrolled crowd. Eventually security realised that they were creating a seriously dangerous situation and created a gap in the barriers. But I spent my favourite song by myself. I was furious.

The train home was awful, packed in a carriage standing up, which went by every stop. But I’d had such an amazing time, once I’d been reunited with my love.

Thoughts on Chronic Illness

Recently a friend told me that she might have cancer.

Two lumps had appeared, one small, one big. The doctor immediately sent her for a biopsy. The cells were abnormal and treatment is needed.

The doctor was worried because she used to be a heavy smoker and overweight, two known risk factors.

She said the worse part was the torment of not knowing.

Once she has a diagnosis, she can plan, but for now she has to wait, thoughts churning around about the future.

We discussed how she could manage it and even speculated as to what the result might be. I tried to reassure her, but there isn’t much I can say or do, other than telling her that I will be there for her, no matter what. She was experiencing an emotional storm of frustration, anger, sorrow and fear. She is a strong woman both mentally and physically, but nothing can prepare you for the shock of being told you have a long-term illness.

My friend is courageously dealing with an uncertain future. She said that her illness had helped her gain more focus and she will now attack her bucket list with a renewed vigour.

In times of difficulty we need the courage to draw on our inner resources and access support networks. We may need to evaluate our perspective. In Buddhist philosophy, adversity is seen as the best teacher, a chance to learn from experience and emerge a stronger, wiser person.

So what have I learnt from the experience of my friends?

Firstly, the importance of living in the moment.

No one has a crystal ball. If we speculate about the future we only create fear and worry. This destabilises us and prevents us from being fully present to support friends in need. Everything is easier if we take a moment, slow down and just float on the river of life, wherever it takes us. Not accepting our reality is like trying to swim against the current; it wastes our energy and is futile.

Secondly, I need to be grateful.

We spend so much time focussing on what we do not have. We are constantly unhappy with the present and want more. We forget just how lucky we are. There is so much suffering in the world and, whilst we all experience peaks and troughs, somehow we escape the worst of it.

I would like you to take a moment to be grateful.

Be thankful for all the people in your life who guide and support you, your cheerleaders. Be thankful that you have mental and/or physical good health. But most of all, be thankful for the love and kindness of family and friends. Against all odds, love conquers all.