I've read the lovely comments and advice on my previous entry, and I'm very grateful for the caring advice I get on my entries, thank you all ... Rather than replying there, I thought I better just make a new entry... For the time being, I don't have to worry about which doctor I'm going to see, because I received a letter telling me that my appointment for the end of August has been cancelled. It promises that a new appointment date will be sent out as soon as possible, but it could put it back weeks... Now, I may not see a doctor until late September or October. If I'm really lucky, I'll get a new date that's sooner, like early September... I can be hopeful, but I also know that realistically, they're very behind, and swamped with patients... so I could wait another month, or 6 weeks. All I'm thinking is, 'Can I hold on?' I will hold on to hope that they don't push me back, as I've been waiting for a year and the doctor I saw a few weeks ago may have contacted them to get a move on for me. I will hold on to hope for early September.
If the letter hadn't come, I would probably have written that I'm not sure if we can ask for a particular doctor, because I don't think they know which doctor is going to be on, in advance. I think the shifts are decided much nearer the time, so the letters they send out to patients always say, 'To see the head of department or someone from their team.' Whoever is available on the day. At least, that's how I think it works. I might be able to ask someone about this when I get my blood test results this week or next week at my local doctors surgery.
Besides this... The UK is in for a heatwave in the mid 30s this week, so I'm really worried about that. I don't do well in the heat, and being dizzy and woozy and underweight, it makes me very anxious, and I do have a fear of fainting. A symptoms update:
Over the weekend, my head was funny and woozy, I lost balance while standing a few times (I'm absolutely positive the balance issues are due to woozy head), I always always have abdominal pain after lunch without fail, and had to escape to the bathroom on Saturday while my friend was here... Last night my muscles were really bothering me, it's not pain exactly, though they do hurt if lightly pressed... it's more like an ache that's intolerable, like when you have an itch or something crawling, it feels like I need to move around, jiggle my limbs, stretch out... like I need a professional massage n o w. But I can't really stretch out because of the reflux/hiatal hernia. I read the comments about POTS and I've done some reading on that; I do wonder if I have it... I seem to become weak when I stand, get woozy and lose my strength. I can't tell if my heart rate increases or not, though.
Thank you for making this a place I can write about my health and get some support for it too
With only 3 hours of sleep, I finally left the house for the first time in a long time, a trip to the doctors surgery for the first time in just over a year; my last trip there was June last year, when I was told that there was nothing they could offer me, that I needed to wait for the hospital. (An entire year later, I've finally heard from the hospital.) I only went up there today for a blood test. Even though I was tired from lack of sleep, I hoped the appointment would be quick and simple as blood tests usually are. But my head went funny in the car, something it hasn't really done in years, even though my head has always 'dropped' in elevators when they move (I don't know how else to describe the sensation of my head going funny other than 'dropping,' like my brain is in its own elevator). Every turn around a corner set my head off. Then as I stood in line, I fidgeted with my hands because I was afraid I was going to drop right there in the waiting area. I shouldn't have been surprised, then, when the process of taking blood began, that my head immediately went funny, and I became faint. I should have seen this possibility, as my head has been much worse than ever since Autumn, with new sensations like brain zaps and dizziness like I never had before, but I didn't think that a blood test would ever become difficult. I think the reason is because one of my best friends has a phobia of needles, and constantly calls me brave for being able to get blood tests. I have never been afraid of blood tests. So today, when that needle went in and my head responded as though I was afraid, I felt embarrassed and ashamed. The nurse brought me water, told me to eat some sugar when I get home, and shortly after I got home, I burst into tears. My head is really bad, sort of dizzy, faint... my heart feels like it's just going to give up... I feel dangerously weak when I'm standing and walking around (though sitting isn't too much better), my abdomen hurts as always... I'm sucking in air with big breaths... and my muscles are hurting, screaming if they press against the car, against anything.
Truth be told... I'm afraid. I'm becoming more and more scared of my body and I know it's progressing... I have an appointment at the hospital to see a gastroenterologist next month, but I don't know who I'll see. I need it to be the head gastro that I saw last time, the one who heard about my other symptoms... the man I saw the year before... thought I was just anorexic. I'm scared that he might be the one I see. He did not listen when I told him about my reflux and vomiting and night sweats, etc. Somehow, none of that went into his ears. He decided I was anorexic. How could I get him to listen to me now, to read my list of symptoms, to consider something physical and biological and not an eating disorder? I guess it's pointless to worry about it. I don't know who it will be. All I can do is take my list. And myself... knowing what I know. The challenge is... to stand up for myself and my health.
But I'm afraid.
Well, after a couple of bad days in a lot of pain and calling up for a doctor to come out to the house, I finally got to speak to a doctor... and I felt like she listened, heard me. She was here for an hour, a good 30+ minutes more than I expected from a home visit, and she read my list of symptoms, pressed the muscles in my back (I said it was my arms and legs that were bothering me), and took my list with her. She mentioned 'chronic fatigue' 2 or 3 times and said 'fibromyalgia' at least once, which I took as a great sign that I wasn't being dismissed as mental, depressed, what have you. She said I need a blood test and reflux medication. I got the reflux meds, which dissolve in water, haven't started them yet... I used to take them, but can't swallow tablets any more. I'm still waiting for a blood test form so I can actually get this blood test... she also said she'll contact the hospital. Get them moving.
I feel very faint in the heat, I'm always scared, with my head, that I might actually drop one day... my head is... funny. Sort of light... it's not new (it's been like this for years), but it's much much worse than ever, and I feel like I have to drag my legs when I'm walking, because it's like my legs suddenly turn to lead, or I'm wading through treacle, like my body is mechanical and my brain is struggling to move the muscles. I think it starts with my head... but I'm not sure. It's hard even for me to know what's going on.
I wake up with my arms, back, and neck in so much pain, and to a lesser extent my legs, like I've been badly beaten in the night. Yesterday the pain was terrible and I could hardly walk as I tried to make breakfast; I was wobbly, off balance, my back hunched over. But it eases later.
There is another thing I want to write about... but I will write it another time... perhaps. If I decide it's safe for me to ask, to confess, to put out there for advice and admit to myself, as a real issue.
A distressing night. After a day of little to no head symptoms, my head decided to play up as soon as I went to bed. A huge Zzzap! went through my head like a sudden vibration and I shot out of bed because, although brain zaps are now nothing new to me, they come and go in phases, and for weeks I've been more or less zap-free. I think it may always be scary. These zaps kept on coming after I lay down again, just as it seemed my body was settling down into sleep, a sudden vibration would come. It felt like it was building pressure too, even building pressure in my nose. It was 2 hours before I finally fell asleep.
A short entry this time... I don't think I can hang around waiting for appointments much longer.
It's been a while since I came online. I'm sure I had a topic for the blog, but for the life of me, I've forgotten it. I guess I'll just write a mishmash of what's been going on. Or not going on!
I got an appointment to see a dietitian in another county that's a good hour's drive away, early in the morning. Getting to another city so early in the morning is not possible for me or my family, particularly my dad who is the driver and who sleeps over 12 hours and misses most of the day with his M.E. So we rang to get it changed, had to leave a voicemail message, and now we're waiting for a new appointment. Preferably in the afternoon. I've written out a summary for her, even though I feel a bit embarrassed printing out all these things for doctors to read, but what else can I do? Writing things out is the only way I can articulate them. I may tweak it before I print it, but so far my summary for the dietitian:
Foods I have cut out:
* 'IBS' - Wheat, high fibre foods, cheese, fruit, all vegetables except carrots and swede, nuts, seeds, meat
* Acid reflux - All fruit, juice, smoothies, fizzy drinks, milk, milky dairy products like yogurt and rice pudding, chocolate, tomato, vinegar
Vegetarian/pescatarian since 2011, tried meat in 2017 but had severe symptoms
Currently experimenting with lactose-free butter
Experiments still to do:
- butternut squash, parsnips, sweet potato
- peanut butter
Seem to react badly to:
- possibly quinoa
Went gluten-free approx. September 2018
Symptoms that improved after going gluten-free:
- No longer bent double
- Possibly gut pain; piles
- Night sweats
- Acid; used to get severe acid that debilitated me for hours at a time, where I would have to stop what I was doing to wait it out. This still occurs, but less frequently.
- Vomiting acid in the night
Other possible reasons for symptom improvement:
- Cutting out gassy, hard-to-digest foods like peas, runner beans, sweetcorn
- Possibly eating less fibre
- Raising the bed
- (For piles/constipation) Drinking more water than before
- Genius pancakes or Schar waffles with lacto-free butter
- Schar brioche rolls, hash browns/Yorkshire puddings/chips/roast potatoes/boiled potatoes
- Gluten-free Quorn
- Carrots, swede
Dehydrated and throat extremely dry as drinking water causes reflux, feels like filling up an open bag. Water also makes acid.
I had my first ever home eye test on Monday and all I can think is, 'Why didn't I do this years ago??' Both of them were lovely and I cannot wait to replace these broken glasses that have been slipping off my head for 6 months with nice new ones! Now I just need a home hairdresser and home dentist. Hmm.
Summer is approaching which means I'm starting to get worried about my fluid intake. The heatwave last July gave me some anxiety, especially in the mornings when I was scared I was going to faint from dehydration. I drank water first thing back then but I haven't been able to since, as putting water into an empty stomach seems to cause burning, firework acid for ages, maybe even all day. I'm not sure how I'm going to handle the heatwave this year, when it comes. Thankfully my body allowed me to put down more water throughout the day during last year's heat, as if my stomach took mercy for the sake of my body's survival and ceased its acid revenge until the heat subsided. I can only pray my body will do the same again.
My throat suddenly closes in at night a lot. My mouth is almost sore most of the time, and my throat noisy. While other people daydream about sunny vacations and buying a huge house, I daydream about drinking a nice carton of juice. It's scary when my throat closes up, feeling like I can't breathe. So far it's only after going to bed, when I've swallowed my dissolvable anti-depressant and gone to lie down. I know it's dehydration.
Muscles have been jolting a lot lately. My torso jumps, and my legs have been going at it the last few days. It happens most when I lean back. Which tells me that wind, good ol' acid reflux, has something to do with it. But the connection between reflux/wind and muscles jumping is lost on me.
A scary sensation keeps occurring that I can't easily describe. It's as though my muscles suddenly seize up, and my heart seizes up, and I feel like I have to drag my body. It's like dragging myself through incredibly thick mud, like Never-ending Story. It makes me dizzy and light headed too. It's scary until it passes. Mostly the feeling that my heart is also seizing and dragging. It makes me feel like I'm going to collapse. It's a new symptom - maybe within the last month or two. Don't know what to think of it. But I don't know what to think of any of my crazy symptoms.
Reflux is bad today.
Depression is starting to hit.
It's just another day, really.
After approximately 8 months of being sans gluten (at least in my diet), I'm faced with the decision of whether to continue, or conclude it early. I had originally planned to keep it going until Autumn this year, after getting some work done and pushing for some progress over the summer, ideally in the form of doctors seeing my plight and saying, 'Yes, I think you're absolutely right and sick as a dog!' (What daydreams.) But now, I just don't know if I can continue. For 7 months I have been eating the same things, putting up with the blue thread, brown poop-like pieces and golden gloop I have found on them, and just can't tolerate it any more. My choices in the gluten free aisle are limited by fibre content (I don't tolerate much fibre and a lot of the GF bread alternatives here seem to be loaded in the stuff), and suspicious ingredients that I have possibly reacted to, such as cornflour, quinoa, oats, seeds etc. Only 2 foods got the check mark: the poopy gloopy pancakes, and Schar sweet brioche rolls.
I had a 2-hour break from writing this entry as illness has hit me HARD today. I'm freezing, but keep coming over hot and sweaty; my head is light; I've been to the bathroom twice; my allergies feel more like a cold today, and I feel overall rundown and very weak. I can only think of 2 suspects: Hormones, as my skin is angry and uncomfortable with acne; and the free from crackers I've been eating for breakfast since yesterday. I can see no suspicious ingredient except for soya bran. Honestly, I don't know what soya bran is, but I know soya is a devil. I have no clue about bran. I've never had an all-over flu-like reaction to a food before, though. Feeling ill, I took my 'stomach pillow' and phone to my room, and immediately burst into tears.
I can't do this alone without a doctor's assistance anymore. I have cut out every food on earth and all I'm left with is potato, carrots and swede. Can I eat potato for breakfast, lunch and dinner? I hate food, really despise food, but oh no SHE HATES FOOD SHE HAS AN EATING DISORDER. 'DoEs pARt oF YoU WaNt tO bE SkInnY?' All I want is to speak to a doctor that doesn't think I have anorexia, that doesn't think I'm a psychological case, and doesn't shrug their shoulders telling me I've been through everything and simply nobody knows anymore. I want someone to look at my printed symptoms list - cut down to one page for their convenience! - and consider them as a whole. I feel like this isn't a huge ask.
I don't know what to eat for breakfast tomorrow. I have no pancakes. I refuse to eat the crackers. I guess I'll have the GF wheat waffles again. I can't tell whether I'm reacting to the GF wheat or not, because I've also tried free from crackers with soya bran this week. I probably should have waited a few days before eating the crackers. But I just didn't want those darned waffles, either. I am seriously considering the butter croissants I ate last year until I started the gluten free experiment. I feel no better gluten free - certain symptoms such as head zaps and muscular jolts started after removing gluten, but then I remember that I used to walk around the house bent double, and my back went up straighter after removing the bread. Then again, I also cut out peas, green beans and sweetcorn, possible causes of the popping gas that hasn't bothered me in approximately 9 or 10 months.
What am I supposed to do? What am I supposed to think?
I have to end here as illness is coming over me again, acid, bad head, bones hurting, and I think I have to run to the bathroom.
All I want is for someone to help me, but when all is said and done, when the symptoms have passed and the crying is over, it remains a fantasy, and I remain fighting, alone.
Our family got into an argument last night, but sadly, the subject is nothing new. My mother's disregard for my dad's M.E has always been apparent, at least within the last 5-7 years, but now with dad's condition gradually worsening before my very eyes, her disregard and his frustration has reached new levels.
He can easily be in bed for 12+ hours. She dislikes this. She seems to resent the rest he gets when she has to get up and do housework. She resents it when he goes to lay down during the day. If he is missing the day, or if it's late in the evening and there's still no sign of him, she will go upstairs and draw the curtains to say 'wakey wakey.' Or she will switch the light on and walk out again. For years, he has resented this. They have resented each other.
The argument last night, after she switched the light on to get him up, started with her commenting, 'I don't know how somebody could stay in bed that long without their body clock telling them to move. I could never lie there that long. My body would say, "What are you still doing here? Time to get uuup!" I don't know why his doesn't.' A comment she has made many times before. My dad replied, 'The clue is in the name: Chronic fatigue. People who don't have it have no idea what it feels like.' The argument turned to whether or not she knew what the fatigue felt like. She talked about her radiotherapy treatment in 2012 and how it was exhausting and she got no rest, yet had to come home to do housework, with no support. My father's retort: 'No support. We could have done the cooking and washing up no problem but your OCD doesn't allow anyone in the kitchen, "Don't touch that, no I'll do that," so they couldn't have done with your OCD. The fatigue then was temporary for 2 or 3 weeks, imagine having that every day for the rest of your life.'
It's an argument that ultimately gets nowhere, only becomes an argument that her stubborn inconsideration is a typical trait of Cancerians and she goes silent and no longer engages for the next few hours.
Sometimes I wonder what she'd think if I were diagnosed with M.E, which will never even be considered thanks to the black mark on my medical records.
In other news, as I can no longer eat those Genius pancakes that I despise every single day, I seem to be trying the only alternative I can find that is not a fibre bomb or filled with suspect ingredients: Schar waffles, gluten free but still wheat. ? Why has this gluten free brand with a great rep made waffles with wheat? Oh well, this is my unplanned opportunity to experiment with wheat, sans gluten, and test out my tolerance. I suspect oats and corn, so now I can watch wheat. Although, it's not the best time to be certain of the result... I'm already flaring, feeling like I've been abused in the night when I wake up in the morning, my muscles jolting a lot (I even did Thriller yesterday), and now my period showing up a week earlier than expected, which always causes gut pain the first 2-3 days.
Nothing can ever be simple, can it?
Well, my dad wrote two letters about my situation: one to the head gastroenterologist at the hospital, and one to his GP. He sent them off nearly 2 weeks ago, and as expected, we have yet to hear anything. It isn't surprising, and it's probably true that his letters were unusual. The doctors probably don't know what to make of them. He had me read them over to check for any missed information that I want included, but honestly, I have no idea what's best to write in a letter like this. So they were short, 3 or 4 paragraphs. I felt they were very vague but gave them the OK because I worry these doctors will be more confused and annoyed than anything. (I always feel like a burden - a feeling I wish I could shed because I'll never be able to fight if I fear I'm a nuisance child.) It will be 2 weeks on Monday, so the question is, where do we go from here? Wait another week? 2 more weeks? A month? ...Forever? At this rate, I'll end up making an appointment and trying to explain 7 years/15 years of personal history to a man who's short on time, ignorant about who I am, and 'humourless.' A messy appointment I hoped to avoid, hence the letter from my father, his patient of many years, someone whose case of M.E he knows.
Meanwhile, I have been gluten free for approximately 6 months, give or take, and see absolutely no improvement in my symptoms. It dawned on me that cross-contamination in the home is still an issue. I am the only one on a gluten free diet. Which means the others eat sandwiches, biscuits, crisps. I realised that my dad eats a sandwich and then goes around the house touching things with those wheat hands. My mum eats Custard Creams every day and likewise then goes touching things. Everything I've ever read about celiac disease and cross-contamination tells me that they need to wash their hands thoroughly after eating these things. I have raised this issue but my faith in their ability to remember and also, if I'm honest, take it seriously, is nil. Contamination is tough in any celiac or gluten-intolerant household. It's hard to remember all the 467 ways something can be contaminated. A lot of these ways seem like OCD paranoia and that makes it hard for people to take them seriously. In my case, there's no positive result for celiac. Even my father got negged in his biopsy after his positive blood test. So I have taken the challenge of being gluten free entirely on my own as a theory; no medical advice or assistance, nothing to back up its necessity. It's an experiment at the end of the day. And an experiment perhaps does not warrant washing hands after a biscuit because the naughty biscuit crumbs might get on the banisters and my possessions.
I feel at a standstill. I have taken the steps I can see before me, but the rest relies on other people. Making sure the home is clean from gluten. Hearing from doctors. I'm not sure what the next step for me to take is. Truthfully, I've turned away from the theory of celiac in recent months, thinking my continued symptoms and the new/progressed symptoms that keep popping up mean gluten is not a problem within my body. I have considered M.E or lord knows what illness instead. But, I can't turn away from the possibility while I see contamination. I just want to figure everything out. Trying to figure things out is very lonely. Especially when your family aren't fully on board. And your SOS message in a bottle goes unanswered.
I have written out a full list of the symptoms and sensations I experience, what for, I'm not entirely sure, but I thought it might be helpful if I can get anyone to read it and consider me seriously. Heck, I'll thrust it at anyone! It's constantly being updated as new sensations arise and surprise, and I've probably forgotten something. Thought I would save it here also.
SYMPTOMS SINCE OCT 2011, WORSENED/PROGRESSED SINCE 2017
UPDATED APRIL 2019
- Chronic acid reflux feeling like fireworks, burning, painful, sickly. Have cut out all acidic foods and drinks. Plain water can make burning acid.
- Acid can get so overwhelming I have to stop what I'm doing and 'ride it out, wait,' for however long it takes, even up to 2 hours.
- Feeling of something stuck in throat, food refluxing back up to throat as I'm eating.
- Drinking water makes stomach/esophagus feel full, as though it expands the area like a balloon or hot water bottle, so only have a few gulps. Always dehydrated and thirsty as a consequence. Throat often closes due to dehydration.
- Cannot lean back, bend, or lie down due to reflux. Cannot lie on left side after going to bed. Leaning back causes immediate reflux/burning acid.
- Gut pain, can be triggered by foods, sometimes shouting out and crying from pain if accidentally eaten a trigger food.
- Constipation, sometimes piles. Stools often pale, especially after eating trigger foods and shouting from the pain. Sometimes blood in stools.
- Fuzzy head, light-headedness, vertigo, feeling of head suddenly 'dropping', head zaps, sudden vibrations through head felt in teeth, dizziness. 'Drops' sometimes create 'electricity' running through chest and fingers.
- Muscle jolts/spasms, particularly in the chest. Chest jolts may be due to reflux/wind: heart often feels like it is jumping or 'somersaulting' when laying down, making my chest and other muscles jolt. Have woken up in the night from multiple jolts in my sleep as heart somersaulted. Jolts sometimes creating 'electricity' through my chest, arms and fingers. Have felt electricity in other parts of the body such as shoulder.
- Muscle pain, sore points that sometimes 'scream' if lightly pressed, severe muscle weakness; cannot lift many objects, carry trays, reaching over can be a struggle. Stiffness and aches on waking up in the morning, as though I was battered in the night. Cannot focus in the morning, try to focus on an object to 'wake up.' Sometimes mute, unable to speak and 'zombie-like' in the mornings.
- Tiredness, sometimes fatigue, occasionally so bad that I cry and cannot wait to go to bed.
- Sensitivity to noise, light, heat, and the sun (sun creates fuzzy head and feeling of light-headedness, dehydration)
- Crashing the day after going out or seeing friends at home: crashing involves worsening of reflux, IBS, head symptoms, muscle pain and fatigue - sometimes being mute, not speaking if the previous day was particularly busy.
- Acne, inflamed, all over face and other areas of body; feels painful, uncomfortable, like something is crawling over skin. Only antibiotics help control it.
- Very dry, flaky skin; cracked, ridged, and peeling nails.
- Nasal congestion, like having a year-round mild cold.
- Malaise: indescribable feeling of illness, involving acid reflux, muscle pain, head symptoms, weakness, flare-up of general symptoms, severe sickness.
- Symptoms worsening with hormones at certain times of the month.
- Hot flashes, sometimes so bad I have to run to sit by a fan even in winter, palpitations, poor balance and coordination, inability to concentrate.
It's been a full month since my last visit to the forum and my flaky streak continues as my online footprints prove me to be a 'hit and runner.' When people talk about 'online footprints' my first thought is, 'well the Tory government can bloody well see how sick I am because I post so much and Google so much.' My second thought is, 'why do I join all these communities and write these posts if I then stay offline for a week, or a month, like how rude must I appear to people?' I know that the internet is just the internet; I have seen many people 'disappear' in my time online (particularly in the mental health communities), and I know that chronic illness is, logically, going to stop people from actively engaging online as much as other people do. Still, I wonder why I bother if I'm just going to shout something and then walk off. My online footprints show I am a lost wanderer. Not really belonging anywhere. Just breezing through.
It's also hard to know where to begin when you decide to get writing. A foggy, fuzzy mind is no help when you're trying to work out how to articulate your current concerns and symptoms, the experiences of the last few days, or weeks. Since my last entry I have thought a lot about how to speak to a doctor; more specifically, WHO the doctor should be. My lifetime GP, the only doctor who has ever understood me, has retired. I'm now faced with the task of finding a new GP, one that can listen to and fully comprehend my story, as I start from scratch. My former GP had known me since I was a baby. My story is not a simple one, as I've been a psychiatric case for most of my life. I'm painfully aware of how much that complicates things. Mental health professionals, especially, have made me painfully aware of how much that complicates things in the minds of others.
My first post here was a thread about how little credibility I seem to have as a lifelong psychiatric patient. It made me hesitant to make my concern public on this forum because I know what a battle it is to have M.E/CFS taken seriously as a physical illness and not a psychiatric one. It made me feel like I should be shunned. Without going into it again too deeply, I've had anxiety for most of my 29 years, diagnosed with social and generalised anxiety plus agoraphobia at 14, and my life has pretty much been defined by that since. In October 2011, I finally hit a wall in my toxic, 5-year relationship, and my body responded to the hopelessness of the situation and my need to escape it by panicking, my heart rate leaping to 120, then 170, for which I was hospitalised for 24 hours as they ran tests. When I came home, I noticed a number of physical sensations that I'd never felt before, such as permanent indigestion, a light, fuzzy head, dizziness. I also suffered a vomiting bug in November, but I can't be sure if symptoms actually began after that. I was told, 'It's your heart rate.' All right. I improved after a couple of months, got mentally and emotionally calmer and healthier, ended my relationship firmly with no fanfare, and started up my life. Symptoms stayed and I noticed more. 'It's the beta blockers.' I came off the beta blockers. 'You have acid reflux and maybe some IBS.' And on it went, years of mostly acid reflux treatment (to NO relief, I might add), with little attention on my numerous other symptoms, until in 2017 I decided enough was enough and wrote my GP a letter, detailing all the symptoms I experience. I was then tested for celiac disease as my father had tested positive in blood a few months before (he didn't even know), but both my blood and my biopsy came back completely negative. My father's biopsy was then negative, too. I haven't heard from the hospital since, and I'm left without a GP.
The plan of action I keep coming back to is speaking to my father's GP. He knows all about dad's M.E and his celiac results, and if I want any answers to this mysterious illness of my own, my dad's GP may be the best candidate to consider me seriously. I am, after all, directly related - I'm his daughter, my symptoms are many, varied, debilitating, consistent with testimony about M.E/CFS (and celiac), and a few mirror my father. Logically, he may be my best hope. However, my mum disagrees, saying he's 'weird' and 'doesn't know' anything about me, unlike my old doctor's son, who I have seen a number of times but dislike because he condescends to me and makes me feel like a stupid child. He may know me, but he doesn't understand me. And that's the problem.
It has been very, very hard to get people to take my physical complaints seriously, especially since my celiac biopsy came back negative. Even a gastroenterologist in 2017, after I described the last few months and the sudden worsening of my reflux, which now had me vomiting, throwing up acid in the night, unable to swallow medications, cutting out foods I previously ate just fine, told me he couldn't understand my weight loss (a stone in a year), and referred me to a psychiatric dietitian for an eating disorder.
It's a fight for anyone with M.E, or Celiac Disease or any other hard-to-diagnose illness, to be taken seriously. It's another fight altogether when you have a very long, very full history of psychiatric disorders. I'm a nervous nelly. I'm a paranoid nut. I'm young. And I'm a woman. All of this scratches a line through my file and gets me buried away in a drawer. I can't have a physical syndrome/disease, because apart from acid in my esophagus and a hiatal hernia, nothing is evidently wrong with me. The abnormalities are in my mind, not my body. I do not have a neurological disease, I have a psychiatric disorder. This has been hammered home to me on more than one occasion by mental health workers who have sat in my living room and told me, in no uncertain terms, that stress and depression are giving me these symptoms and my mind is conjuring them so I can avoid life.
The saddest thing is, sometimes I believe it.