Hello there, I would like to start off by saying thank you so much for this forum! I have read through some people's stories and I am so glad I am not alone in this. Although I really wish none of us were suffering this way
I hope to get to know some of you better x
Ok, well, I'm Aimie just turned 19 years old and have been ill for about 5 years now.
As a child I had a lot of stomach bugs, asthma problems and seasonal allergies. But this has always been put down to a normal childhood thing. I was put on very high doses of Becotide Asthma Inhaler at the age of 3. And I have been taking inhalers ever since! Not that they help much... I had always been on the small side too. Underweight and smaller than other children my age.
But aside from that I was a pretty healthy child. Had lots of energy and was able to live my life.
Then as I turned 14, things began to change. I'm not sure which came first, but things started to go wrong. I began to lose my appetite, started feeling nauseous. Then I had a really bad bout of projectile vomiting and was very ill for about a week. I couldnt keep anything down for some time. Then later on I got Shingles and that really took it out of me for some time also. Then I started to eat less and began to lose weight. Very slowly. Nothing significant, just a pounds or so at first.
My mum noticed something was not right and marched me down to the doctors, but being phobic of doctors I was very resistant.
Then things started going really wrong! I started seeing the school nurse. The first time I saw her I hadnt lost any weight. But she height and weight checked me and told me I was underweight. And then she decided I had an eating disorder and needed to be referred to CAMHS. My mum was not pleased and she knew from the very beginning this was something physical. And not an eating disorder! I had to go to the nurse and be weighed. My weight slowly slipped because eating was causing me alot of pain and discomfort. And then I went to CAMHS and they diagnosed me with anorexia nervosa... I ate everything on their meal plans. Even though it hurt so bad and made me feel very ill. But my weight kept going down so I was sent to the adolescent mental institution. They believed I was an anorexic girl who was refusing to eat. But as I became iller in there, it was realized I was having an issue with milk. Which I now know to be a dairy allergy. They still continued to give me milk products just less of them. I was admitted to the mental institution a further two times in addition to the first admission. I was threatened with sectioning, tube feeding, and all sorts of horrible things. All because I continued to get iller ever time I was sent there. I was eating all their food, even though the pain was unbearable. They just thought I was hiding the food or throwing it up or exercising. Of course I was not. I was too ill to even think of such things! It seemed I was not absorbing the food properly as my weight would continue to slide down. Even drinking water was causing me to be bent over in pain. I remember one of the male workers taking the cup in my hand and forcing it into my mouth and forcing me to drink. I remember being screamed and shouted at because my pain was so bad I could not finish the plate of food they had given me. I remember being made fun of, disbelieved, mocked and basically made out to be a liar.
Eventually my parents discharged me against medical advice and I started to see medical doctors. However with the anorexia diagnosis looming over me, nobody took me seriously. I got my first colonoscopy and endoscopy done in 2010. It showed mild inflammation of my esophagus. However the doctor meerly shrugged it off, and told me I was just anorexic and should be tube fed. I had to wait 7 months to see another gastroenterologist. In January this year I had a DEXA scan which showed I have Osteoporosis
In February I went to see the new gastro who told me all my problems were entirely nutritional and I should go into hospital and be tube fed. He told me I should just drink my milk because nothing mother nature gave us could do us any harm... (urmmm, ok?!) When we got the letter he wrote, I was truly horrified. He had decided I was anorexic and had depression as I'd been crying in his office (maybe because he was being an absolute idiot and wasnt helping me?!). He then went on to say he wanted me in hospital so he could tube feed me via PEG tube and feed anti-depressents through the tube. And then he went on to advice I have electric shock therapy!!!!!!!!!!!!!
After this I scarped up all my money and paid for a private consultation with a lovely doctor. She ordered an upper abdominal ultrasound and a fecal fat test. The ultrasound came back ok. We didnt hear about the fat test. We went to our GP and the GP told us the fat test came back fine. But this was untrue. 5 months later I find out I have fat malabsorption problems... Back to earlier this year though. I got myself referred to London. I saw another gatroenterologist who ordered another endoscopy and colonoscopy which showed gastritis in my stomach. Then I saw an endocrinologist who said I have CFS/ME caused by the illness (whatever that may be) but my low weight was a contradictory factor. She wanted me to have a brain scan MRI, EEG, low dose synacthen test with fasting insulin and MRI small bowel. I've now had all but the small bowel MRI. I know that my MRI has shown polyps on my maxillary antra, but I do not know what else it has shown. Also at first glance the synacthen test and EEG look ok.
I spent the first 4 1/2 years of my illness with the misdiagnosis of anorexia nervosa, being flung into mental institutions and being forced to endure pain and suffering no one should have to go through. I've had to be rushed down A&E because of abdominal pain or breathing problems. All those years were wasted because there 'professionals' were too stubborn to see past their mistakes.
Now the diagnosis of anorexia nervosa has been completely overruled. I knew I never had it in the first place, so did all my family and friends...
My diagnosis' at present are: mild chronic gastritis, osteoporosis, asthma, allergies, CFS/ME, fat malabsorption, polyps, IBS.
Currently my Symptoms are: low weight (BMI: 15.5), abdominal pain, back pain, mouth and tongue ulcers, nose sores, hair loss, nausea, abdominal distention/bloating, toe/feet/leg/finger/hand/neck/tongue cramps, 'funny head' moments, constipation, whole body aches, fatigue, some blurry vision, practically no appetite (having to force myself to eat to prevent more weight loss), lack of thirst, trouble breathing, unexplained rashes, foul tasting mouth, problems sleeping, losing sensation in a body part such as my leg or head, usually followed by painful pins and needles, swallowing problems, reflux. Those are just what I can think of off the top of my head.
Oh and I dont know if it is a symptom or even something to do with my illnes at all, but I look very young for my age. I am often mistaken for a child of around 12/13. I am rather small, the smallest of my family even though I have a sister who is 5 years younger than me! Neither of my parents are small. They are at least average height or taller. I have a very childs body too. Straight up straight down! But this might not be realted to anything!
I'm just so glad I found this place! I am beginning to go insane from this all.
Even though I no longer have the stupid mental health thing looming over me, doctors are still so resitant to test me for anything, even though it is very obvious I am ill and in need of help asap. I get so scared some nights that I wont actually wake up in the morning because I feel so ill
I just want to have the life I should be able to have.
Right now I live at home with my parents. I have to live off disability benefits as I have been told I am too ill to go to work or college. I sit inside each and every day because I am too ill to go outside and do anything. If I feel daring and try and go out I'll end up feeling so very poorly when I get back I cant actually get out of bed. I had to stop going to school when I was 15, I have not been allowed to go back to my dancing and my drama (I love acting and performing, its always been the one thing I'm very good at). I would give anything to be able to get out there into the world and start my life. I would give anything to get out of this house and go out and get a job, get some more qualification, get out and see my friends! What I wouldnt do to have had a normal teenage life. But instead of worry about boys, spots, exams and getting grounded, I've had to worry about the next time I go under anesthetic, the next time I get jabbed with needles, the next time I get rushed down A&E, worrying if they'll offer me more tests, if they'll ever find out whats wrong, if I'll ever have a life, if I'll wake up tomorrow...
I would rather be stressing about uni than having to deal with all the pain and illness. I'm not belittling anybody else's struggles. I know everybody's lives are hard in their own ways. I just wish I didnt have to go through what I am going through. Sometimes it just becomes unbearable. I try to be strong, not necessarily for myself, but for my family. They struggle so much with me being ill and I wish I wasnt such a burden to them all. I appreciate my mum so much, but I just feel I take up so much of her time.
I've skipped some stuff out, as my brain is a bit mushy right now.
I'm sorry this has turned out kind of long. I dont really have many other people who I can talk about things with. No one else seems to understand what its like.
Sometimes you can feel just so alone...