It all started in October 2000. One day i woke up with a tremor in my hands, my mum had had thyroid so she imagined my thyroid may be over active. She called the doctor and i had some blood tests, and accepted we didn't totally know what was going on. I kept going to school, and everyday it was harder, my legs felt weak and i keep feeling so tired.That point i didn't know what was going on, from then on i kept having constant appointments at the doctor, who said we do not 100% know what is wrong at this stage.
I was feeling low and down, and lonely, but then it all went downhill from there. I then got an appointment at my local hospital, the paediatrician gave me yet more and more blood tests, then they came back-My results were abnormal, my ANA's-anti nuclear antibodies were positive. This indicated a possible autoimmune disorder yet other tests for them were negative, no doctor could explain this. He wondered if it coul;d be lupus. I had these huge red patches around my eyes, which made me look like a panda; they lasted quite a few months. I was then admitted into hospital, i was now off school and hadn't seen any of my friends. Things were bad i had nobody apart from my parents, i was in hospital, no one knew what was happening, and i felt so weak, that's when i could no longer walk properly and stand; slowly everytime i stood i felt light headed and had to sit, that's when i went in a wheelchair.
The fatigue just took over. I have exercises i do everyday, but nothing has really helped dramatically. It was distressing not being able to move around well.
Then on i had test:-MRI scans, abdominal scans, brain scans, blood tests, you name it, and still no luck. Each night i cried with fear, i knew i couldn't stop this i thought i was dying, i was scared everytime i saw someone whether i would see them again, it was always a new day to face, more suffering, and more of the mental frustration on my mind. I didn't know what was happening, but it felt like no one believed me.
After that my depression got worse, i was not sleeping, i kept gettin awful panic attacks, all i was told to do was rest. Then i got the OCD-i was getting thoughts that i would die i kept seeing it, knives, guns, all like a dream, i was in a different world, i cried for help and i had no friends there, no one saw me, no one was there to cry on, i had no friends, but i was too ill, and isolated to even talk to anyone. I only wished someone was there to hug me but my friends knew nothing. It wasn't their fault. I just felt too ashamed of the state i was in. I had to keep everything about me so confidential cos this depression was scary enough for myself to cope with. I felt i could not face anyone.
The OCD just took control, i could see people talking as plastic dolls, everything used to stop and i saw silence and watched myself dying and screaming in pain, this made me think how long i had left, i just used to look around as seeing the knives made me jump, i was shaking. This ice cold feeling came through my face and down my spine, the adreneline rush pushed me back a side, i could only cry. Nothing made me feel better and food made me sick. People were just people i couldn't appreciate anything, and the worst thing i just fely miles away from God. I prayed every night, at home, in hospital. I read my Bible late at night in poole, kept reading james and Peter 1+2 great encouragement.
It's just stayed the same for ages now. It's hard when you are around people to explain how you feel, you generally stay happy for their liking but to be honest it's not how you feel. False smiles and laughs happen, but when you are alone does the feeling af being trapped in a sinking quick sand really hit you. I have started playing the guitar, that helped a lil getting all my emotions out but prayer has been the best, i just hope there will be some ending to this illness. Also, with depression it's not something you can control, there's a huge difference between feeling down and depression. No matter how hard you try it's always there. I apologise for this graphic description but it is how my illness has been.
Then i was in hospital again, more tests were done, and i was diagnosed with M.E, then i started more symptoms: white patches on my legs and turning purple, that all explained why i would start feeling faint as blood just pools in my leg and they turn bright purple by just sitting, or trying to stand, though they couldn't explain this. They still said it was in my head. Who was i to believe? My mind was all over the place, and everyone said it was just my own imagination even though i had all these physical sypmtoms that they ignored.
I lay in the hospital bed wondering whether someone would come in and say it is all going to be ok, come in and say a prayer with me, but that was not reality in this state. Ialways wondered and wished the door would open. I cried and wished it would all go away, but i was living in a lie. It felt so awful i took it all out on myself, i believed it was my fault or past mistake. All some people at church could say was i was to be ashamed, God had punished me. All i had was the thought of God. I lay each night looked out the hospital window i could see the harbour. I lay and wrote songs, they are the only thing i ever did, i have my songs still now and the most important one-depression. I thought at the time that was the only good thing from my illness but now i know that i was just dreaming of a life that i wouldn't have, a song i wrote in my darkest days was all the memories i held.
Then on all, i had was God and i prayed to him every night, asked for help and love, and he was there. Then they referred me on to Great Ormond Street where i stayed there. They said to me they couldn't help me, and they couldn't cure me, they said to pull myself together, as i had non organic depression. I didn't blame them. It was probably as distressing for them to not know as it was me. There is so much pressure on doctor's these days. There i was in pain and ill and i was told it was non-organic. I was told i needed to bring myself out of the illness. After that i just hated my life, i was given anti-depressant after anti-depressant. I felt like there wasn't any necessity in anything, and i felt like giving up, but i never would allow that yo happen. My family were distressed at the doctors approach, just because they couldn't find out the cause for my illness. If only it would go. They would just tell me that it was in my head - a fimgent of my imagination. Who was i to believe myself of the professionals? I started doubted my own sanity. I didn't even know, but all i did know was that i wanted it to go away, and to wake up as if it was all some horrible nightmare. I then went back home, stayed in at home laying on the sofa taking in each minute. I knew i had done nothing. If i could change one thing it would be to stop all this, get better, but it is not reality until it happens. I will probably never recover, until it's sorted, but it will be, pressimism never gets anyone anywhere. That doesn't mean i won't continue fighting with every muscleand bone in my body. I'll do all i can, and all i have been asked to, to have any hope.
The pain will always be here and this depression will stay as a scar in my heart for life. I wouldn't be saying this unless i was deadly serious. I admit i have had illnesses before but never to the extent of this, i just only wish i knew why it was me that got it. Whether God hasa bigger reason than the suffering, i do not know, but i do believe there is a reason. It's the only bit of hope to hang on to.
My depression is the worst i can't tell you how bad it is, but i will make my life a success people judge me wrong, but i have to prove i am not this bad person i am. I am nice to people because i treat them like a person should be treated, not like the way i have been treated this last year. I just hope i can make it somehow. I have tried psychologists, but they either try and force things out of you, because they do not not know much about it, try to change me, or just look clueless and pretend to listen. They are just doing their job, i guess. It's hard to help me mentally to cure the problem when it's caused physically.
Lately, in this last year, or just less than, more like 7 months odd, things have changed dramatically in moving forward: I was referred to St. Mary's hospital when finally someone said there was something seriously wrong with me....going down the lead of Lyme Disease. I was admitted in to the infectious disease ward (grand union) which was very pleasant and i had a huge battery of indepth tests no one had thought of doing beore: EMG, Lumbar punctures, muscle and skin biopsies, EEG, extra bloods, ultra sound of my muscles, ECG, SPECT scan and so on. They expected to find nothing, but everything showed up. Not just slightly.... evdently..I knew i wasn't lying, they just didn't look hard enough, or bother to do comprehensive enough tests. Finally a doctor, and she was a psychiatrist just looked at me and said "You're not making this up, you've got a physical illness... you don't look like an ME patient, you look ill." My EEG was abnormal, my SPECT scan showed i had brain damage... the illness wasm't in my mind... paradoxcially it felt so good to hear my brain was not symmetrical, that it was damaged/ there was an abnormalily to my brain.... my bloods showed up finally... anaemia, highly over-active immune system adn so the list continues, and my skin biopsy showed Chronic Erathima Migrans (sp?)...... otherwise known as the skin rash associated with Lyme, however without the organimsm, they can't make a final diagnosis. It also showed i had an auto-immune problem of vasculitis, which was why my feet/legs/arms/hands are purple, all this time i was really ill.
After all this time they realised they'd made a big mistake, i was seriously and chronically ill...Professor Levin (my paediatric consultant) instigated IV ceftriaxione, which i had for 4 weeks. I got through over 20 cannulas in the end... my veins aren't very good at all! I had a permenant cannula in..... that's the treatment for Lyme, but it becomes less effective the longer it is taken to be treated, or something along those lines. Treatment should be given within the first year, and it took them over a year and half to find it in my skin biopsy... and after a year it becomes near impossible to ever eradicate it.. which meant all the time they were telling me i was lying, and making it up, they stopped me from being able to recover, because they were letting the illness develop into the latter, serious, chronic stages. The thing with what i have is that it's not found in the blood.. it's called the evil genius, and it's a cousin to syphillus... in fact it's very similar to MS. It's a very serious, infectious disease that attacks each organ and progresses to taking over the body, not to mention it's psychiatric accompianment.
After the IV's i got a bowel infection- Sudomembranous Colitis (clostridium difficille) (spelling?) from the treatment i had last summer (2001). It killed all the good bacteria in my gut distoring the balance therefore i was admitted in hospital twice with dehydration as i couldn't keep fluid in me. It passed blood through vomitting and other means of excretion.... with rather unpleasant green mucus... and blood.... i won't go any further! So after my luck of 4 weeks with a cannula, i had another 2 lots of 6 days with a drip *grr*
My bloods and skin biopsy also supported the fact i now have an auto immune disorder, that they have recently come the conclusion of in Paddington. I have features of the auto immune diseases, just not one specifically, but quite a few..but it is evident my body is attacking itself instead of infection, therefore Prof. Levin started me on IV immunoglobulin just before Christmas. It takes about 8 hours to infuse, and it is basically donor's anti-bodies to boost my immune system. there are no guarantees. I have had 2 infusion... one before Christmas and one on the 3rd of January and neither have showed any improvement.
We are waiting to here from Professor Levin, literally now, to discuss starting steroids and a different option. I will keep you posted, not that it's really that interesting.
PRof. Levin started the steroids, and i had them for a week, but they have been temporarily stopped because of indigestion problems.
The only other things that have changed is.... i am bald. I lost all my hair. Most probably due to the fact i have an autoimmune disorder, and possibly my anaemia type of thing, but they aren't entirely sure. It just came out over night... i didn't expect it at all. My anxiety has been awful these last few months. Generally being aware of my existence and constant vivid thoughts. I worry that i'll never be better and that i'll never be independant because i will get a panic attack or feel horrible. It's a feeling of being trapped. All the time of not knowing anything i could almost ignore the fact i am very ill, but nowthe realisation has kicked in. Results show problems, i am hairless and various other things, and it has hit me. It is just a case of baring it. Take each day at a time.
I went to the Chelsea and Westminster, where i had my endoscopy operation/biopsy etc. My small intestines are very inflammed ,well they called it chronic but i don't know if they use that term in a not so extravigant way. Infact all my gut/first part of my intestines or something along those lines were inflammed, and my own white blood cells are killing my gut, and so on. I have some internal bleeding and acid production in the wrong places, plus reflux. The biopsies showed this as well as the operation photos themselves.
Before they can work out what this problem is they'll need to go deeper into my bowel with a white cell scan, which means i'll be back in St. Mary's. They'll be able to determine more specifically what the problem is how to treat it. They'd be inclined to use some strong drugs, but they aren't safe, and lower immunity, so there's always a risk with them, but then again if they'd help this inflammation problem in my gut then it's got to me something. Just to clarify the gut problem is as a result of the illness. It's the same thing going on- cells killing own cells. It's like my own white cells can't tell which cells are infected and which aren't so they attack everywhere.. this is because lyme disguises itself in my own cells, so my antibodies can't differentiate what is bad and good.
Well i had the scan, it went wrong the first time as the blood they removed to be sent away clotted, so they repeated the process, and started me on some stronger drugs and also more steroid infusions.
I'll let you know what happens next......
Still no hair... it grows to about a cm then it all falls out again...they also started me on a drug called azithromycin, which is an immunosuppressant to suppress immunity in my body so that my body tries to stop attacking my own cells. They keep stuffing 3 daily infusions of methylprednisolone into me... it makes me feel pretty rough. I had one of the worst nights of my life after the first infusion, but thankfully i had the most lovely person looking after me. I guess just carry on fighting it.
It is hard to understand, how i feel, or to read this entry and see past hat i say, however, i am just trying to help others understand, just as if i was in a situation where i had a friend who was like myself. Sorry i had to just get that off my chest, all in one. I can only hope. I wrote all of the previous bit when i was about 12 years old, so please excuse my grammar, and that was in the time when they knew nothing.
They know now i do have a physical immunological problem, a systemic lupus erythematosis/lyme disease type illness, with a chronic inflammatory disease, vasculitis and features of auto immune diseases.
After going to america for treatment everything has changed... dearest Karen organised the "ellie fund" to fund for me to go to america. I'm on a new long term course of treatment, and things have dramatically changed:
I have hair¬!!! I HAVE HAIR!!!!!!! I HAVE HHHHHAAAAAAAIIIIIIIIIRRRRRRRRR! WOOOOOOOOOOOOOOOOO! I can't believe it.... after a year and half of none, i finally have hair! Every morning i wake up and see it i thank God for having it. My head is so warm! It beats a freezing neck and cold head in winter, where's i'd wear a hate to bed!! It's also grown back a different colour and slightly wavy instead of dead straight as it was before. Amazing!
I'm also gaining strength in my muscles, when i do my strict hour and half of exercise each night to gain my muscle strength. My bell's palsy has finally gone (one side of my face paralyzing and dropping), and i feel so much better in myself.... though the best thing is that.... I AM AT SCHOOL!! After over 3 and half years of no school what so ever, i am back and doing my A levels, which i am absolutely loving... i'm also driving, and slowly gaining my independance back.
Has it all been worth it?!
Yes. It has, because i appreciate life... even though i am confined to a wheelchair, and life still has it's big problems, and i still ache, and hurt, and cry, but i do with at least some dignity. I'm happy. I've learnt what dignity means and if that means sacrificing 4 years of my life then i am glad i have done so. Paradoxically i am glad, because it means i have seen things in life that other people haven;t, and i can hopefully provide someone with some hope that there is a light in a never ending dark tunnel; sometimes you just need someone to turn it on. If i've gone (and go) through this just so i can help one person, then i am pleased to have done so. Yeah ok, i still look at people and realise that i can't be them, or have what they have, or get up and walk around like everything's ok, but it's my life now, and i've accepted it - there are people worse than me - my illness is being managed now... the treatment is managaging it, and if i stay like this for life, then i can live with it. I'm just happy that i can smile and mean it again.