Where do I start? From.when I was first diagnosed? Or when I first noticed things were wrong?
Let’s start off from when I was younger, I was I believe 6 months old when I caught pneumonia, followed shortly after with German measles, then that was it for my childhood illnesses. Except I used to faint for a past time. No one knew why, bloods were taken, but nothing found. My periods starred just after I was 9 and by the time I was 11, I’d had tonsillitis every few weeks for the last few years and at 11, I got Quicys (probably spelt wrong). I was very poorly and needed injections daily (no idea why)
Throughout my teenage years I would have tonsillitis every two weeks roughly and would still faint, but with no answers, life went on. My periods were heavy and would cause a lot of issues including a lot of pain in the stomach and back.
At 19, I finally had my tonsils removed, at 21 I kept falling for no reason, my ankles would give way to me suddenly, but it was put down to me being clumsy. I was seeing a doctor regularly for bad headaches and chronic pain in my stomach, especially near and after my periods. I was told I had menorrhagia and just have to get on with it. I was put on the pill to help, but my periods were 3 weeks on and 1 week off, so I was taken off it. At 21 I got pneumonia again which turned to pleurisy. I was 23 when I collapsed at my parents house, my dad took me to hospital where I was operated on and found to have endometriosis and polycystic ovaries.
At 25, I went to work thinking I had a bad cold, but at work I was found in the ladies bathroom, with a high fever and had collapsed, after being taken to Westminster hospital, they said I had a very bad case of flu. I was driven home and that’s all I can remember for 3 weeks.
I had been having injections, prostab regularly in my stomach for endometriosis in this time, I was OK with it, but had felt better.
This was in my opinion the beginning of my problems. I went back to work after nearly 5 weeks off, I was pale and had no energy. It was put down to the fact I had been so poorly, but I couldn’t seem to get well. A cold would come along and I’d be floored, anything that was going around I caught.
I had a few laparoscopies in the next few years for endometriosis, and when I was 26, I was awake through an operation, I shouldn’t have been, but I was. I was given valium to calm me down in recovery when I told them how I had felt everything and heard everything. After getting home, my brother recognised I was in shock, but when he phoned the hospital they said because it had been done privately (beneden) that we would need to get in touch with the hospital.
A few days later, we were burgled and 3 days after I suddenly went blind, I couldn’t see anything for a few minutes, then one side came back, but one of my eyes remained blind. We called an optician and he saw me within two hours, after seeing me he sent us straight to hospital, where they told me I had optic neuritis and that I had had a demylination. My eyesight did return, but never completely back.
Moving on several years, after trying dor years for a baby and getting help with Clomid, I fell pregnant, sadly I miscarried at 11 weeks and 5 days. The doctor was cold and told me it was what they called a misconception. I never got a d and C and struggled that I had lost my baby. A year later I was pregnant again, this time without any help, and though my baby kept trying to come early from 25 weeks, he made if into the world at 32 weeks. I had split very badly and needed a lot of stitches. Unfortuanetly the hospital sewed me up a bit too tight and sex was out of the question because I had been stitched too much. Thankfully I had another op and they unstitched me allowing me to have sex again. My son was only 3 months old and I was put on Betablockers after they said I had postnatal depression. I hadn’t, I loved my baby so much, being a mum was all I ever wanted once I met my husband.
I was taken off them 3 months later, has I was having weird type of fits, they weren’t epileptic and I knew they were coming on. I always got a warning.
I fell.pregant straight away with my daughter, who also tried to come early at 23 weeks, but managed to stay inside me till 38 weeks. I had been taken int9 hospital 6 weeks before she was born, because I had early signs of pre clamsia.
Now this is where I struggle with my memory. I remember us all getting flu, but then I have no memory. My daughter was 6 months old and my son just over 2, but apparently I started behaving strangely, I wouldn’t let anyone near the kids, I started ti be aggressive to people and wouldn’t go out. I thought my husband was poisoning me, I’d had to stay at my.parents house for them to look after me because I would see people that weren’t there. One night I phoned samaritans, and the lady who was on, was a specialist endocrine doctor.
She calmed me down and then asked me questions. She said I needed to see the doctor in the morning for a thyroid blood test. She saved my life. I saw.my doctor who said it wasn’t my thyroid but he’d test it. The following day I had a call to go and see a Mr Prentice who specialised in the endocrine system. He spoke mainly to husband, and told my husband he had never seen it, because modern medicine picks it ups, but I had mixodemia and I was probably only a few weeks from a coma. He started me on thyroxine, which kept needing tweaking, at 250mg he had found the right amount and that I was responding well on that dose. For 6 months I have no memory and all thus is from what I’ve been told by others.
It is from here on that I picked up loads of autoimmune diseases.
.
Living with autoimmune diseases and Lichen Sclerosis 
Leave a comment