Adulthood:
• I made it into med school by some stroke of luck and struggled on.
• Sleep got worse and I became insomniac for a few weeks in year one with anxiety and panic attacks but I got rid of those within a few weeks. Once these had gone I was fine again.
I was having trouble getting exhausted though and would need to crash.
• In year 2 I went to Egypt and when I returned I had gastroenteritis and diarrhoea which never went away after 6 weeks. I was told I had ibs and treated for it but it didn’t work. When later bloods found a raised ESR I was told Crohn’s was likely and I began to get very weak, having difficulty walking, feeling very hot, having joint pain worse than usual etc and i went into hospital for 3 days. They did a sigmoidoscopy which apparently missed the crohns as i was diagnosed with ibs again and found to be iron deficient again! So more iron pills.
• Eventually I stopped sleeping very well due to worry id fail my exams because i was sleeping 15 hours a day. The insomnia, depression, and anxiety kicked in for a few weeks and i was given a 3 week course of zopiclone to get me through my exams. It didn’t work and i was still only sleeping a few hours so i was given beta blockers, which made me feel very spacey but worked.
• I went to Ecuador a few weeks later and getting away from everything helped. I was cured by the time I came back and haven’t suffered any mental illness since really (thank God!) I did however have a few flu like illnesses when I was out there volunteering. I also got bitten by horse flies at one point and had massive swollen reactions on my legs which itched and hurt and made me exhausted and unable to sleep. At this point i would usually sleep fairly well or have the occasional night where i just couldn’t sleep. At the end of the 2 months i caught tonsillitis – 3 infections in 2 months – so unlucky! I was still having some diarrhoea still but that had also improved with time. I became exhausted for a while after and they suggested post viral fatigue.
• I had to repeat year 2 because i failed one of my exams. Year two went well to begin with but eventually i began to get much worse. I was always exhausted, had a headache, had bad joint pain, bad muscle pain which got worse the more i did – a lot of walking left me with twitching burning legs. Accupuncture and Chinese medicine helped somewhat and i eventually started doing less because my mum was helping so much with sending me meals and doing my washing and was sleeping so much. After overdoing it my body would hibernate for 21 hours a day. I would also get told off for forgetting stuff and get laughed at when my brain would go blank. I also got told off for yawning in classes and regularly would start falling asleep when in a dark warm room! I’d try everything to stop it but nothing!
• Eventually i passed year 2 somehow and went into year 3 which was mostly clinical years. I was given a diagnosis of CFS by an immunologist and because i was very dizzy told to put salt back into my diet – miracle! Helped so much! I had a synacthen test which was normal. At first i was doing really well and loving it but it didn’t take long for me to get an infection and that was it. 3 months in i had to stop because i ended up in bed and never got out again.
At this point my sleep cycle got out of whack. I ended up in bed for the next 6 months with severe fatigue, severe brain fog, not so bad pain because i wasn’t doing anything, fasiculations of my muscles, myoclonic jerks, troubles with light/sound/surprise of any kind,.
• sleeping very badly – dreaming all the time and even having lucid dreams, sleep paralysis. (stopped sleeping on my back due to the paralysis which went away eventually.)
• At one point I started having myoclonic seizures. (Doing too much (pushing mentally or sitting up too much triggered it.)
• I had to teach myself to walk properly again as i has sciatica which fortunally went away and did not return.)
• I also was drinking 7 litres of water a day, losing weight. I was practically underweight despite a healthy appetite and eating lots.
• Waking up every 5 mins to pull layers on or off. When I would get cold i would curl up in layers and feel low and slow until i warmed up. Hot was anxious and I would collapse and be too weak to move with hot skin. The only thing which cooled me down was ice. I would get hot swollen feet which would hurt and be red and veiny (I think erythromelalgia.)
• Constipation and during my periods diarrhoea.
• Hair loss.
• Bleeding gums. Bruising.
• Clumsiness.
• Acid reflux diagnosed by gp due to eating lying down no doubt.
• Hypoglycaemia type episodes with shaking and everything but no evidence of lowered blood sugar, would pass if i ate.