Dear me...letter to my younger self.
"Dear me" was a project we started for the 2014 Idiopathic Hypersomnia Awareness Week. We asked people with IH to write a letter to their younger self knowing what they know now. If you have been diagnosed with Idiopathic Hypersomnia knowing what you know now what would you tell your younger?
Dear me letters are always welcome so if you would like to share your letter with us please send it to firstname.lastname@example.org
*All letters are published anonymously unless otherwise requested
So you finally have a name for it now... What has plagued you since your teens is called Idiopathic Hypersomnia. Writing this I'm thinking of how it felt to finally know that what is wrong with you is a real medical condition. It felt good in a strange way. People have doubted you for so long that it's kinda good to know that you were right. So you have a name, you have medication and as is (or was) typical of you you're determined to get on top of this thing called Idiopathic Hypersomnia that has been holding you back. You just have to find some information first because your doctor was honest enough to admit he doesn't know much about it. He has put you onto an organisation called Hypersomnolence Australia and at long last you speak to someone that truly does understand how you feel. The women you speak to is honest - there is no known cause and no known cure. She has some advice for you too but you don't think you are going to need it.
The first 6 months after diagnosis will be tough. A lot of what the women said is making sense to you now. The medication you have been prescribed doesn't treat IH itself in fact it doesn't treat the symptoms either. It does nothing more than force you against your will to stay away. Some days you are going to wonder if you weren't better off without the medication because sure you are sleeping less but you feel absolutely terrible and struggle to function so you decide to take her advice and make some long overdue lifestyle changes. I won't spoil it for you but you're going to make some changes to your life that you never thought you would but it will make life easier for you so go with it - don't be scared.
You have some great friends that will stick by you. Don't waste your precious time awake chasing people (including boys!) that deep down really don't care. I can't promise a happy ending because we are still on this journey but I can promise you that you are going to meet some wonderfully supportive people.
Take care xx
22 September 2014
I've tried so hard to make this letter as positive as I possibly can while still be honest. This is the best I can do....
The diagnosis is Idiopathic Hypersomnolence. Don't waste your time trying to work out what it is because it's not going to make any difference. All you need to know is the medication is not going to make it better ie: don't get your hopes up. I know that doesn't sound very positive but trust me it's good advice. The truth is the doctor lied to you. The medication will not "help with the symptoms" and the longer you expect that it will the more disappointed and disillusioned you will be. Going to another doctor won't help either so save your money - you're going to need it.
Writing this its been 10 years since you were diagnosed and to my knowledge there has been no research done on IH in Australia and no advances in doctor education. So nothing much has changed but here's the positive - there are people working towards changing all that and I applaud them. They too have IH so it can't be easy.
My advice to you is just keep plodding along finding as much happiness as you can from simple things and you can't go wrong. Ignore the loud people, they are only loud because they know they have nothing worthwhile to hear. Oh and yes you do want a dog. I know that sounds crazy but you spend so much time at home it's going to get lonely. Sam is going to be your best friend and you won't know how you ever coped without him.
12 September 2014
You never expected to hear a doctor say that there actually is something wrong with you. That’s not to say it’s come as a surprise. You have always known that despite being in perfect health needing to sleep as much as you do just couldn’t be normal. So has being diagnosed with Idiopathic Hypersomnolence made a difference? No, not really. You have already found that the attitude of your friends and family certainly hasn’t changed. Unfortunately the medication doesn’t really help, in fact you will find that it can make you feel worse but one thing will change and that’s you! You will realise that you are stronger than you ever thought you could be. You are going to make changes in your life that right now don’t even seem possible but they will become necessary when you realise that without support your first choice ambitions are simply not attainable. You will do a lot of crying over it but sitting at a desk behind a computer for hours on end is just not something you’re capable of but don’t panic, you are a talented artist you just don’t know it yet. People will tell you that you are “throwing your life away” but listen to your inner voice it knows what you are capable of.
You will continue to struggle with early morning wake ups, and fight the urge to sleep all day often giving in because you know you have no choice but you have a job now that you can work around your sleep needs. You will never be financially rich but not having to fit into a normal routine will help you cope better than you ever have.
Right now I know you’re scared about your future and you’re a little pissed at your parents carrying on about you dropping out of uni but you need to know that it’s going to be okay. Stressing about your future only makes this thing worse, so take a deep breath and start thinking about what you don’t need in your life. What’s weighting you down? Be ruthless, get rid of it. You know it’s something you have needed to do for a while now. I promise things will become a whole lot easier when you are focusing on yourself for a change.
5 September 2014
It's been 8 years since we were tested for IH. Yes, right now you have just been woken by the technician saying they aren't quite ready for you to sleep yet. Don't worry. They just need to strap you to a few more things (uncomfortable, right?) and you'll be allowed to sleep. In the morning, she will tell you that you were asleep again before she even made it back to the computer room, and that you had an amazing sleep from where she was sitting.
Don't be disappointed in her words. We both know that we are capable of getting a good sleep. Its just when we wake that we feel we haven't slept at all. Many more people will say negative things over the years, even with your diagnosis of IH: "why don't you get more sleep," "why is it so hard for you to stay awake/alert." Brush it off.
You are the only one who knows how you feel. Oh wait, you're not! In the coming years you will find some amazing support groups on facebook, people JUST like you! People going through the same issues as you. You will learn several coping mechanisms (not all perfect, but you'll try them) and you will turn out ok.
We've been working almost 2 years, full time! I get up in the morning, I get ready to conquer the day, (I take my modafinil), and I go out there. FIVE days a week. Sounds absurd, doesn't it! You can do it, we are doing it. The weekends belong to us. If we decide to do nothing, that is OK. When we accomplish tasks on the weekend we can jump for joy! We get enough pressure from the outside, we don't need to add to it ourselves. We CAN be happy, productive people. Part time, full time, late night, early afternoon, something is out there for us, you'll see.
Take care of yourself,
9 September 2014
Well more than two years have now passed since that long weekend when you first began to question how much you sleep and it's probably as good time as any to reflect on the journey.
That weekend was kind of the starting point. But then it wasn't really. It was just the point when your eyes began to open. It was that weekend that led you to mention to your new GP that you seem to sleep more than your friends. By then you had already ceased driving except for extraordinary circumstances. Perhaps this was what caused your GP to investigate beyond all the "normal" test results.
It's been 18 months since that first sleep study which confirmed what you already knew. Your sleep is "plumb normal". Sleep has never been a problem for you. Your problems have always rooted from not enough sleep. Just ask your family. You get grumpy and irrational and they know that sending you to bed is the only cure. It has been since your childhood. Your sheepskin travelled with you so you could sleep on the go. In your early teens you would find a quiet room and sneak off when you couldn't convince your family to take you to your own bed. No one has ever questioned your need for sleep. When you did mention it to your GPs they'd run bloods, get normal results, and everyone just moved on.
But your sleep physician didn't. Like your GP he decided to look a little deeper and sent you for more tests. Which came back abnormal. Which caused a bit of a shift in your world. Actually it's rocked you pretty hard and you're still working through it. But you're doing ok and you're going to work this out. Somehow.
I think you've worked out that the drugs aren't that great and are making your life even harder. And so you are facing a pretty big challenge. I know it looks daunting and scary but you are tough and you will find a way through it. And you're not alone anymore. That support group you've found will continue to encourage you through the days ahead.
Remember to stop and look back from time to time. Look at what
you have accomplished both before and since diagnosis. The road ahead may twist in ways you never expected but the journey will be worth it. You are worth it. You will find balance as you continue to pursue it. And you will one day look back and wonder what
you were so worried and anxious about. You will get better at looking after yourself but that will continue to be a lifelong challenge for you. Let your family and friends help you in finding the balance. Enjoy each moment for what it is and let your future
surprise you. xoxo
9 September 2014
Okay so the task is to write to your younger self. You have had Idiopathic Hypersomnia for as long as you can remember. The first signs were when you were in your first year of high school, so you were just 11 years old but it took another 25 years before you were finally diagnosed. If we were to be honest with ourselves and to anyone reading this we would have to say that the only feeling we felt when the doctor told us that we suffer with a rare neurological sleep disorder called Idiopathic Hypersomnia was not scared, certainly not shocked and not even relief. We felt nothing but vindication. We didn’t feel that the diagnosis finally proved us right but rather it proved everyone else including numerous doctors wrong. Unfortunately feeling vindicated is a short term response. The fact is no one particularly cares what you have been diagnosed with or what it means to you. You have two young children 4 and 3 years old so you just have to do what you have always done, you get on with life as best you can. So I thought I would pick up a little way down the line.
You have spent your whole life helping people. This won’t change but you are going to find yourself working with a charity for disadvantaged young women that is designed to empower them through education. Now this is different. This is something that you feel passionate about so you are going to throw yourself into your work like never before. But it never leaves you. You are doing something for young women both professionally and in your personal life. The lines often cross and once again under the burden of taking on too much you struggle. You are approaching 40, you learnt a long time ago that you don’t have a soft place to fall but you are going to realise that the answer isn’t to just keep going and going like you always have. But what is the answer?
You decide to look for people “like you”, other people with Idiopathic Hypersomnia. What you find is going to change your life in ways that you never thought imaginable. And it is going to start with you meeting an intelligent young lady with a sharp wit and a no nonsense attitude who also happens to have Idiopathic Hypersomnia, and her wonderfully supportive mum. I don’t want to give too much away because you are going to go to this meeting totally unaware of the impact it will have on you but I can assure you that you will never again allow anyone to dismiss, negate or misunderstand Idiopathic Hypersomnia.
But before I get to how you are going to achieve that you need to know that everything is going to be ok. You will be forced to retire from paid employment at the ripe old age of 40. Your struggle at work is going to get so bad that you start having some serious accidents. Kitchen fires, near misses on the road, and numerous other things are going to have you wondering if what is wrong with you isn’t more serious. You have more tests done and your doctor assures you that, nope, this is Idiopathic Hypersomnia in all its glory. Cognitive Dysfunction and the effects of sleep deprivation are things you need to learn to manage better. Yes I know you sleep almost twice as much as most other people but the problem is when you sleep less it causes you to be sleep deprived - yep the medication that helps you stay awake often does more harm than good, but of course you won’t find that in the literature. So listen to me because this is important. No amount of sleep is ever going to leave you feeling refreshed this is true but don’t cut back on sleep in an attempt to be what society expects you to be because it’s only going to end badly. That’s a promise.
So by the time you meet Jessie you have already spent the best part of the last 2 years learning everything you possibly can about Idiopathic Hypersomnia through researching the literature and spending hours talking to other sufferers. You realise that there is nothing you can do about the life you have lost and at 40 there probably isn’t much you can do to change your future. But meeting Jessie inspires you to not just continue to learn but to use what you have learnt to hopefully make a difference for the younger generation of people diagnosed with Idiopathic Hypersomnia so that their road post diagnosis isn’t made any more difficult than it needs to be. Well that’s the plan but you are going to find there are some unusual obstacles in the way to achieving that goal. While you may struggle a bit more now than you ever have with sleepiness and cognitive dysfunction rest assured nothing has diminished your passion and your determination so you will get through it. Somehow.
You will spend the next two years spending every day, yes every single day talking to other people with chronic illness, predominantly people diagnosed with Idiopathic Hypersomnia and what you are going to learn is that for many illnesses and disorders the road to diagnosis is often the bumpy one whereas post diagnosis people usually feel relief. Patients and their families know what they are fighting so they are better prepared to go to battle with the knowledge and advice of doctors, with various treatment methods and with the understanding and support of loved ones. However you are going to find thats often not the case with Idiopathic Hypersomnia. One thing you have in common with virtually everyone you speak to diagnosed with Idiopathic Hypersomnia is that the road post diagnosis isn’t really any less bumpy than the road to diagnosis. There are a few reasons for this that I will leave you to find out for yourself but its suffice to say you are going to be so appalled by some of them that you decide to set up the first Not For Profit organisation in the world specifically for Idiopathic Hypersomnia. No, I’m not joking, you will do this just trust your instincts. Not everyone you meet will have the best of intentions. You are going to meet some amazing people that do have the same goals and intentions as you do but you are going to need to deal with the bad before finding the good so don’t give up. Okay, I know giving up is not an option for you, but trust me you are going to be confronted with obstacles you never thought possible…Hang in there. After the rain comes a rainbow… and I can see the rainbow now :-)
2 September 2014
Well I bet almost 3 years ago at the start of your search for why you can’t wake up in the morning, you never would have expected to get diagnosed with something that still doesn’t have an FDA approved treatment and no known cure, I mean heck, they aren’t even fully sure what is causing it yet! Little did you know that your first PSG (overnight sleep study) in December 2011 would only be the beginning. Be thankful your 2nd specialist agreed to your tonsillectomy & UPPP in August 2012 after your first specialist was convinced you had obstructive sleep apnea or you would probably still be searching.
I’m so proud that you fought for what you believed in even though so many others doubted you; especially after your 2nd & 3rd sleep studies now showed normal apnea occurrences despite your daytime sleepiness increasing. I know it seems pointless to have undergone surgery now since that was the beginning of your financial crisis, but the apnea really was covering up your true diagnosis. Also, even though you have begun repairing your relationship with your dad, don’t allow yourself to go back to living in that environment. Just because he doesn’t believe in invisible illness doesn’t give him the right to accuse you of gambling all of your money away at the casino and being a crack addict. The stress of the court process that you will to go through to obtain your belongings while fighting to find a diagnosis isn’t something anyone should have to go through.
Your 3rd specialist will suggest a MSLT (daytime sleep study). You will struggle the few days that you need to be off of your medication to prepare for it and the day of the test will be horrid but I believe that led to more answers. Despite being diagnosed with narcolepsy you are 100% sure this is not correct. You will feel it’s important to tell your specialist that you have never taken non prescription medication to try to stay awake, even though some days the battle to stay awake is so hard you wish you were careless enough to give in just to feel “awake” and “alive” for once.
You know, you really should have written a letter to Dr. Mignot & his coordinator Mali to thank them for recommending you to Dr. Rye. I’ll try to remind you to work on that because besides yourself, they are truly the reason you have been so lucky to be diagnosed as soon as you have been. While Dr. Rye and his team are amazing, they are not perfect, please continue to try to be patient. The 2 month wait from having your spinal tap done and getting the results that will show evidence of a modest amount of GABAA receptor enhancement will seem unbearable. You will feel like giving up so many times in so many ways but you will be so glad you didn’t. The test Your 2 appointments with Dr. Rye & the first Hypersomnia conference have been the best events for you in your life. You may have wasted too much time on the wrong people in your life, but don’t push everyone away- your aunt and Miszy will be your biggest support group and fans through all of this, I know it!
Even though there is no FDA approved treatment and no known cause or cure, never give up. That is hard for me to say even now considering how guilty I feel needing our aunt to wake me up daily. Im convinced since living with her it has caused great strain on her health, stress and caused her to go into a depression. She will take you in when your dad kicks you out & your mom is no longer willing to deal with your sleepiness. Your aunt continues to keep you, believe it or not because she loves you, not because she has to. I know you feel like a failure. The guilt eats you alive daily that you need your friend Miszy to help you so much to complete your schoolwork. She helps you pass each semester, but she too does it out of love, not pity; she could stop at any time. I know she would do anything to help you. You have not done a good job of this so far, but I hope that you will learn to say no and to take care of yourself. You will find support & comfort from many others with the same and similar disorders in groups on Facebook. You probably can’t imagine that you would spend countless hours interacting with people who you may never meet in person but just go with it and keep an open mind; many of them are going through the same things you are.
You will jump through many hoops to receive every lab test known to man to try to figure this out from getting a complete blood panel, spinal tap, ANA testing, seeing an endocrinologist and continuing to look for anything else that could be wrong or that they may have missed. Although once you receive your spinal tap results you know there probably is nothing else but I’m glad that you have never stepped down or given up. It will never be easy. You will continue to wake up every day wishing that one day you wouldn’t but you have never been a quitter and you will keep fighting to make sure you never turn into one!
I know this all seems a bit overwhelming right now. I will save you the heartbreak you experienced after your appointments with Dr. Rye. Even though you are on stimulants, Clarithromycin & Flumazenil you will see very little improvement (despite Clarithromycin & Flumazenil keeping another patient awake for several days straight!). The medications will help you regain some consciousness and mental functioning and they will decrease the fog a bit but you will still not be able to wake up on your own and achieve your dream of being able to be independent and live alone - YET! Remember, with every statement you make in life even if it’s silent; add “yet” to the end because you never know what will happen and what you can achieve. Nothing is impossible until you choose to believe it’s impossible.
30 September 2014