Doctors
Since 2012 I have been having episodes where I am sleeping for prolonged periods of time and my mental age regresses to that of a 5 year old; for 3 years I have had to learn how to cope with this, at the age of 14 I had to learn how to grow up in a matter of seconds and try and accept that this is my life now. I would have been able to learn all this and cope a lot quicker if I could remember what happens in these episodes; I could get over the fact that I sleep a lot and my personality changes to a 5 year old, but not being able to remember hours, days, weeks, and months at a time is the hard part I'm practically sleeping my life away.
Throughout these past 3 years I have been bounced around from Doctor to Doctor hearing the same thing from each of them; they don't know what's wrong with me so send me to another doctor, or they don't believe me and just sign me off their books. I have had doctors who have outright told me that I'm just acting because I want attention; I understand how it comes across but seriously why would I have needed the attention? I was a 14 year old girl with goals for the future and I was on my way to achieving those goals within the 2 years to follow, I was achieving A's in all my subjects at school and I had and still have a very good family and social life. Why would I feel the need to fake something like this? Before I got ill I could see a future for myself; but now I can't even tell you what I'm doing tomorrow, every time a doctor has told me that I'm faking it for attention it knocks me back even more, because without a doctor backing what I'm saying then who will ever believe me? If a medical professional doesn't believe who else would?
The last doctor I saw about a diagnosis was a lovely man at first and he is one of the few who believes me; but when he was unable to diagnose me he said he would refer me on to another doctor who could help me, I have only just been referred to this doctor and it has been over a year since he said he would refer me. Not only is it more than a year later, but he didn't even get us the referral it was pretty much all my mum doing the fighting for me to see a doctor. My mum is the person who has been pushing and pushing for me to get a referral, but even with all of the fighting and arguing about how I'm not faking being ill, it has still taken over a year to get a referral.
How can any person who calls them self a doctor or any sort of medical professional send a patient away with no support from other doctors or social support? Because this is what happened and this is what is still happening; we have been signed off all doctors books for over a year without any kind of help or advice on how to manage my illness, all of the effort to get me the help I need and deserve has been put in by my mum. I used to be proud to say that I live in the United Kingdom and that we have an outstanding National Health Service who care and look after people when they are ill for free, but with all of my experience the NHS is shit. You won't get the real help you deserve and need unless you are dying, and even then they do a piss poor job of it. My mum was taken off her motorbike by a car and was pronounced dead at the scene; on arrival at the hospital they realised she was alive and took her to the hospital, where she was put in ICU and attached to machines. They used elastoplast (which she's allergic to) to holder the various tubes together and in place, after they tried to rescue my mums right leg by putting metal plates and rods in her leg they had to amputate it after an staph infection contracted in the hospital. We all accepted that it needed to be amputated no complaints there, but when she was sent home she was not given the correct equipment such as a WHEELCHAIR to go home in!!! Not only that but every single prosthetic leg she was given did not fit which meant she couldn't use them; the only leg that mum feels comfortable wearing everyday is a leg she had to pay a good few thousand pounds for.
I don't understand how anyone can sit there and say that they are proud to have the NHS; don't get me wrong they do treat people very well and it is free, but when simple procedures are not followed, and they are accusing people of faking an illness multiple times how can we be proud of it?
Hi Lois, I`m really sad to see that you suffer a lot to cope with KLS. It must be hard to have led a very different life than other teens like your friends. The disease is robbing your social communication. But I think the biggest and most central problem is for you not to know what you are - I mean rather your subconscious with your sleeping body – doing for several days or weeks. Do you have absolutely no recollection what about 30, 40 or 50 days happened? Do you sleep somewhere and a growing one month later on - thinking you've just made a little nap times?
ReplyDeleteApologies that I, as a stranger you put so indiscreet questions, and of course you must not answer that. But I really want to help you. My cousin is a dermatologist and working on a research project about ichthyosis - genetic cornification disorders of the skin. They are also extremely rare as neurological disease KLS.
I am not a doctor, even if I'm doing my PhD - in philosophy. But I am interested as my cousin very rare diseases, is output hardly money for their exploration. Therefore, I know that was even reported in numerous media KLS cases, even in the UK - how about Louise Ball or Beth Goodier. Therefore, most doctors should have heard of KLS. I think it's downright rude to insinuate you, would you simulate, to attract attention! I am convinced that you need encouragement during this difficult personal situation - but no allegations.
I don`t live in UK, I`m a German and I`ve heard already about NHS. It `s mostly free for ill people but it`s not very good (I mean the quality) and effective. Is it true that people would not receive artificial hip joints more than 75 or that 5 people lying together in a hospital room? I've read that you only get a primary care as a normal patient. All you have to pay even better. I think this fits the story about your mum`s leg prosthesis. In Germany the public health system via so-called health insurance pays most of the services, including operations, but not, for example glasses and a maximum of 30% for dentures only.
At last a suggestion how you could perhaps remember a few things that happen during your sleep trance:
I've read that KLS associates perhaps with a lack of blood supply to the hypothalamus region of the brain. This may cause a malfunction. I think in this case your body falls in a long-lasting sleep mode. And if you open your eyes and you seemingly awake for 2 or 3 hours, you act like a sleepwalker - because your awareness remains off. You then find yourself in an abstract surreal dream state with mental age regression. Maybe your subconscious is really deep in your childhood without any relation to contemporary. And I think for you it is a very big problem having no control over your body and its behavior (like makes stupid things).
I know a lot about hypnosis and have also attended an undergraduate seminar. In deep trance you can remember everything up in your early childhood, like the color of your dress to your 3rd birthday to you. Therefore, I think it could be possible that much can be transmitted from what you have experienced in your episodes about hypnosis from your subconscious into your awareness. Maybe you should try it once with a hypnotherapist - maybe you're then at least retrospectively memories.
All the best and stay strong! Alex from Germany