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My ultra-smooth keyboard means on good days I can happily type away pages in minutes thanks to my touch typing skills and yet today every muscle in my fingers aches as I attempt to do some emailing. My eyelids want to shut and often do so without my permission. Even carrying my cup of coffee upstairs to my desk is an effort as my calf muscles rebel in agony. And yet I like to consider myself a pretty fit person, visiting the gym several times a week, cycling and walking as much as I can, well on good days!
I’d like to know the cause of my condition. It would certainly help my relationship with family and friends. But M.E is one of those awful hidden illnesses that even the GP cannot fathom! Often friends tell me they too have this and that symptom. Perhaps they are trying to be helpful but I feel like they are simply pointing out I may be exaggerating. I think now before someone asks me “how are you?” My mind races, are you one of the sympathetic ones or should I just bluff it for an easier life?
But despite feeling like this on and off for several years, no doctor has figured out why. My symptoms are throughout my body, the more worrying ones have come recently: my heart pounds through my ribcage at the weirdest of times; I feel wobbly all the time and fainted once on the street. The bin man may have thought I was drunk as he watched me awkwardly from across the road but didn’t rush to assist me as I lay in the gutter trying to get my sense back. I get sudden onset of crushing chest pains, my ribs sometimes feel like they are going to burst through my clothes. I cannot eat as I used to, or face the consequences on my next loo visit. I sleep ridiculous amounts of time and still wake up feeling like I’ve done a non-stop weekend in Magaluf. Each time I try the very limited drugs on offer to the GP to mask the symptoms (no cure exists) I come out in nasty rashes or develop strange twitching.
Certain ailments do grab the doctors’ attention. I have had some of the strangest tests done, some that last several hours in hospital and others that leave me feeling quite odd. I had a contrast dye test done on my chest where they inject a fluid into the body as you enter the scanning machine.
“Be warned some people experience the sensation of wetting themselves,” said the operator. As he ordered me to stop breathing and remain perfectly still, I felt the warm wet patch grow around my groin and then a rush of heat run down to my toes. Thankfully as warned this was just some strange nervous reaction and my bladder had held out, just.
This like all the other tests came back normal, which is good if what they are looking for is cancer. I was never told what they were investigating. I was sent instead off to the heart clinic to check on my palpitations. I had to wear a device stuck onto my upper chest for three days and every time I felt a strong beat or palpitation, I had to press the button to record it. Everything was expected for someone my age they said, except for a very low heart rate they recorded at night – as low as 48 bph – which probably puts in me in some athletic category. In fact the cardiologist told me: “Go run a marathon, your heart is fine.” I just wish I had the energy to take up his advice!
One condition I have been treated for is Thyroid Eye Disease, and I have undergone radiotherapy and several operations on my right eye including an invasive surgery called orbital decompression, where the bone between my eye socket and my brain is chiselled away to relieve the pressure on my swollen eye ball. I have been left with double vision if I move my eye up, down or to the sides. It is still a weird sensation if I forget to lift my head with my gaze and see two faces instead of one speaking to me. What causes this condition is still a mystery to specialists. Why does the autoimmune system suddenly start attacking the eye muscles of all things? My consultant at Moorfields, Jimmy Uddin, has been clamouring to get more funding into researching the condition. “Sadly no one famous – other than Mrs George W Bush – has it so it isn’t a condition much discussed in the media,” he told me.
It has left me slightly disfigured and of late my vision has worsened. It is linked to other endocrine conditions, including thyroid function but for seven years those tests have always come back “within normal range.” It is soul destroying to go back for my six monthly appointment with the endocrinologist only for him to not even look at me, rather the numbers on his screen, and report. “All normal, no further action.”
I worked as a journalist for 15 years and do have a curious and enquiring mind, so it was obvious that if medical professionals could not tell me what was wrong that I would seek alternative advice. I did first try acupuncture and have been taking herbal supplements and they do help to make me feel better for a short while. Then out of the blue the exhaustion returns. Of all my ailments, this is the one that is the most debilitating and the one people, including medical professionals, seem the least likely to believe. There is however one doctor I am now consulting more and more with: Dr Google.
The internet provides tons of valuable advice and lots of nonsense too. If I dare mention something I read about, I am usually returned a stony glare from the GP for trying to usurp his or her role. But the truth is there is a lot of negligence in the modern NHS. Various blood tests have been returned to the GP showing a steady decline of my white blood cell count, which is now below normal, as well as regular dips below the lowest level for my haemoglobin. And yet I have received no advice on whether I should be worried or taking iron tablets. I am lucky to have a Chinese medicine doctor as a friend who often reads my results and cries out in alarm: “Why do they just go by the book and not look at the patient!” He can see my immune system is failing and says my haemoglobin shouldn’t be on the line but be at the mid-point.
I am a positive person, despite my ailments, and am grateful for the private health cover provided at discount by my husband’s workplace. It is by going private, I have an endocrinologist willing to investigate further. I have a plethora of blood tests coming up for diabetes, Lyme Disease, various nasty viruses and the more usual for me, thyroid function tests. It will be useful to find out the root cause, the suspicion is that I’ve had glandular fever, and am having relapses. I hope he is right and can give me the right advice, otherwise I shall be back in bed with my two best friends, iPad and Dr Google.
I blog regularly about my health and how I am battling this illness here: http://100daystogetwell.weebly.com/
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