Basic Stuff

• Name: Mary
• Country: England, United Kingdom
• County: Oxfordshire
• City: Abingdon
• Gender: Female
• Age: 56
• Education: Jr. College
• Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
  • Postural Orthostatic Tachcycardia Syndrome (POTS)
  • Migraine
• Year Illness Began: 2021

Functioning Interrupted

Most Impactful Loss

I had to fold up my own Dog Training and Boarding Business, but also doing things I enjoy, such as walking my own dogs.

My Story

At the age of 6 I got shingles, then throughout my childhood I had repeated bouts of Tonsillitis, that was treated with increasingly longer courses of Penicillin antibiotics. At 18 years of age I had an unspecified virus, but kept turning up to work because I was working over Christmas and didn't want anyone thinking I was skiving. This was a physical outdoor job working with horses and consequently ended up in hospital, after passing out. I was accused by the nurses of taking drugs and drinking excessively because it was Christmas Day - but I had not been out at all in the weeks leading up to Christmas because I was too ill. I wasn't able to eat very much because I felt too sick. I was released from hospital and my parents called a doctor out to see me on Boxing Day, the very disgruntled Doctor at being called out, was unsympathetic, said it's a virus, heaved me up to listen to my lungs and let me drop back to the pillow... I stopped working full time with horses and started only riding and mixing this with Office work. I gave up smoking and moved to a new job in a new area and again, became ill, unable to eat properly (drinking body building milkshakes, was all I could manage), but this time I couldn't stay awake, I became too weak to ride the horses and went to the doctor, as a bit of an afterthought I mentioned sleeping all the time, when I wasn't at work and I was diagnosed with Hypothyroidism, from Graves Disease. When the Doctor rang to tell me, I urgently needed treatment, I didn't believe her! I remember telling her she had made a mistake and I was reluctant to go and get the tablets, but the Doctor insisted. Despite treatment, I didn't feel better, I was extremely fatigued, I couldn't walk properly, my back was in constant agony and although I was able to eat again, I would spend the day on the sofa, going for one short walk with my Puppy. After 6 months, the doctor told me I had to try harder, so I forced myself to get up and walk twice a day and gradually started to walk further and started to feel better, I got an office job and after a year got my own horse to ride (after a payout from my job). I met my husband and got married I was in my mid-thirties by then and we wanted to have children, so I got pregnant as soon as I could, we lost our first baby, which was a missed miscarriage - I could feel that our baby had gone, but the midwife, insisted that I was still pregnant and it wasn't detected until the 12 week scan. I started my own Business Dog Boarding, I found I was unable to work when I got pregnant again, as the pregnancy progressed, luckily my husband was happy to support me, so I studied to become a dog trainer and towards the end of both my pregnancies, my husband was also walking the dogs. Even though my heart rate was monitored throughout the births, they went well and I had two healthy boys. After that I started up dog training business and found that I could manage 2 lessons mornings and walking my own dogs (and any visiting ones) in the afternoon. Though one evening I started having intense back pains, I was admitted to hospital with a suspected appendicitis, I remember that the nurses were exclaiming that I was being sick and they didn't know why, then on being wheeled down to the x-ray department I had anaphylaxis/panic attack (they didn't know which), I slept nearly 24 hours a day in the hospital and I thought it was because of the pain killers, I was being starved in case of emergency operation and was eventually allowed a sandwich in the middle of the night, which I found I was unable to eat anyway. My appendix was removed (though there wasn't much wrong with it!). Something I found out later that is quite common in people with M.E. Anyway, the levels of work went up and down, depending on how much I could cope with, but I started to really struggle. My back went into spasm for two years, I had an MRI eventually, but again, nothing significant was found, except what you would expect with normal aging. In the end, I found hydrotherapy helped to relieve it, especially the Jacuzzi. Ankylosing Spondylitis was suspected by the physiotherapist, but ruled out by the GP.

We moved house in November and we were going to go out with some friends and our children ice skating, coming up to Christmas, I had taken the dogs out for a walk and nearly collapsed, I felt as though I couldn't walk in a straight line, as though I was drunk, when I got home, I tried to clean out our two pet rabbits, but by this time, everything was spinning round. I ended up back in hospital again. I was taken for more scans and heart monitoring, but they could find nothing wrong, again, I was unable to stay awake and was falling asleep in my chair and under the scanner, the nurses were giggling, I heard one say "this one's re-a-lly tired (giggle, giggle) - and I remember thinking, this is no joke, something is really wrong here... but again I was told nothing was wrong, so went home. I kept contacting my GP and complaining of fatigue, but he convinced me it was because of my age (now over 50) and I was working too many hours.

I was struggling more and more and got achilles tendonitis, I went to a physiotherapist and I remember being annoyed, that he was so concerned, he said, he was really worried about me and I kept saying "well I've been checked out and nothing is wrong with me". He suggested I went to see a Pilates instructor (I had seen a few, but was struggling to do the exercises due to pins and needles), so I found a holistic Pilates Instructor, she said, she could not give me any exercises until I had a proper medical review, I was furious! When I said, I have been checked out and my GP says there is nothing wrong, she said, my GP didn't know what he was talking about! Despite being cross, I asked for a medical review and I was treated with patronising distain. My blood test results were not exactly normal - there were several red exclamation marks against my Thyroid Hormones and White Blood cells, but this was ignored and I was told the results were normal. I asked for a referral to an endocrinologist recommended by my Pilates instructor, which my GP refused, so I had to pay privately. The endocrinologist said, I was definitely not well, but he didn't know what it was. After that I filled in an e-consult and it asked me if I had been diagnosed with M.E./CFS - I was diagnosed as the upshot of that (basically by a computer!) - I was so dizzy and exhausted all the time by then, that I decided to take a few days of work and rest, 18 months later, I'm still here, resting in bed for most of the day, getting up at 12 noon and going downstairs to get a pre-prepared lunch for a couple of hours. My husband is looking after me and I can only manage a few steps into the garden. Eventually I decided to get a wheelchair, but I only use it for the occasional outing mainly for hospital visits. I communicate on Facebook and WhatsApp, but apart from that and my husband and two boys I don't see anyone - I can't even walk the dogs with the wheelchair, because I get very dizzy and disorientated and suffer from Post Exertional Malaise, which makes going out not worth it. I have been lucky in finding help from Action for M.E. who have basically saved my life. There have been times, when I didn't think I could carry on, especially when the migraines started, last November, but I have been put on medication which does work so feel lucky!