Dying with M.E. as a software developer
[If you’d like to donate, please click here: Crowdfund or Become a Patron]
[Updates to this article: Final wishes: Crowdfund Update, and Future of my Blog: I’m Still Alive]
A couple of months ago I wrote about Living with M.E. as a software developer. What I didn’t write about was the true extent of my illness, the potentially fatal prognosis of M.E. and what I want to happen as a precaution to my possible death.
M.E. Can Be Fatal
A lot of people don’t believe or realize M.E. can be fatal. In fact, according to the latest research (PDF), 30% of M.E. cases are progressive or degenerative, with a death rate of 10%. The leading causes of death from M.E. are:
- sudden cardiac arrest (or less often, liver failure) as a result of over-exertion, often as a result of receiving incorrect healthcare treatment
- suicide due to refusal of welfare support
- vegetative state (locked-in syndrome) as a result of long-term decline
While the health “service” and welfare state have certainly put me at risk of options 1 and 2 over the last year, and continue to do so (money will run out permanently in July no matter what I do from hereon), option 3 is what I fear the most and seems to be what is happening.
I want to state that I have no written documentary proof that I will eventually end up with locked-in syndrome, but over the last 3 years it is clear that my health is in a steady state of decline and is not improving in any way, despite trying pretty much everything. In December, I was hospitalized with exhaustion when I reached a point that I was unable to move, speak, go to the bathroom etc. I was found after some days lying in my own vomit when a friend broke into my apartment due to my silence. The hospital said if it had been 2 days later I would have died from dehydration. This led to a period of over one month where I was unable to walk or function alone, so I have now taken precautions such as updating my Will and providing my friends with keys to the apartment. They check on me daily now (in the meantime, the health service still don’t care and still place impossible demands upon me on a near-weekly basis – if only I had the energy to take them to court).
My Relationship With Teenagers
In my last post I briefly mentioned that I spend a lot of time with local teenagers. Contrary to many people’s pre-conceived notions of what teenagers are like, these young people have been an inspiration to me and changed my life completely. From a depressed, anxious, socially withdrawn agoraphobic that therapists and psychiatrists failed to help for many years, the teenagers that are now central to my life have turned me into a confident, extroverted person with little-to-no depression or social anxiety. From being afraid to enter a grocery store (to the point of breaking down and crying, or starving myself) or taking the bus, to having no problems with it at all, these people took the time to help me and showed their love and care for a random person like no adult had ever done in my life. They pulled me out from a deep hole and gave me my life back.
The teenagers are now my friends, my family, my nurses and my psychologists, and hopefully, I likewise am to them. When I need food making, or my apartment cleaning, the trash taken out or my dog walking, they do it. When they need someone to talk to, help them with their own health problems or their schoolwork, I do it (when I can). They are a true family and I consider myself extremely lucky to know them.
I Want To Make Some People Happy
I’ve always said I never wanted a funeral, and that I just want to throw a big party for everyone. After some back and forth, it has been decided that this party shall take place while I’m still alive. In an incredible gesture of kindness, the teenagers set up a crowdfund last week for my small bucket list and put in over $500, but I propose to use most of the money on throwing them a party they won’t forget.
Nightclubs have been called, 150 teenagers who have been the main reason I get out of bed for the last 3 years have been invited. Now we need the money. A lot of money. So I won’t pull any punches: please make a donation to the crowdfund below and whether you do or not, re-post this article or the link, re-tweet or promote however you can. I want to give these guys a final gift they will remember for the rest of their lives.
Please donate here: Crowdfund or Become a Patron
Thank you.
Love,
Katy.
Katy would love it if you could help keep her stocked with cookies while she codes!
Katy's Code 
Hello, I am Magdalena May an expert in academic writing.
I enjoy solving people’s problems and make them happy. That is what I have been doing for many years now.
I have been writing since I was 12 years old and never knew it would turn out to be a full-time career. I have also been able to handle several assignments that involves writing. And I worked in three organizations as a volunteer to assist people.My hobbie has always been to help people succeed. And I go the extra mile to make that happen.
I enjoy writing Thesis and have helped people from countries like Australia.
I work with a company whose mission is to provide quality works and make people happy. In fact, many people come to me for professional help on a daily basis because they know I always deliver. And I will continue to provide nothing but quality to build trust like I have been doing for the past few years.
Expert academic writer – Magdalena – inpolesine.com Confederation
*involve
*hobby
*theses
*as I have been doing
Sentences should not begin with a conjunction such as ‘and’.
Hard pass from me Magdalena.
I would like to help with another way than money, I am have negative money right now.
How can I help?
I don’t get much my own, so I can only send some budgets … Your links to the disease description seem to be broken. I read some information about M.E, but I don’t quite get it. I hope that won’t be worse than the disease that Stephen Hawking has been suffered from. And if you can move on and be positive, then that also encourages me since the cornea of my left eye is damaged, which makes my left eye nearly lose vision. From what I read it seems to me that the welfare system isn’t as good as I imagined, as in Mainland it’s been said that those countries in northern Europe are very prosperous and get pretty good welfare with respect to Mainland, while you, such a talented and skillful coder, now are to be tossed by this system. Wow, although I can’t say things here are good now, I just realize the fact that I’m going to be put in deep trouble no matter where I’m if my health decreases such that I can’t support myself no more, especially people here are much more cold-blooded from my point of view and I’ve got no friends like yours. Well, being a somewhat anti-society person does make my life harder. I now know that for various reasons if I’m not willing to be part of the society, then I’ll have to be the enemy of it. Sometimes I wish I could be someone like The Joker who brings chaos and destruction to the society, but when I see someone suffer and be in need, I again can’t help to do something for good… damn!
Hey Katy
I read your C++ blogs. They are wonderful. I also read your blogs about your chronic fatigue condition or M.E problem. I somehow relate with you.
From my experience, I see that in western countries in USA or Europe, there is a tendency to give heavy-duty name to any sort of mental/physical problem once faces. Calling it chronic fatigue syndrome is just another name among host of lifestyle diseases one faces.
I think I in somehow went through what you have been through and I think even if its chronic you can fix it without medicines. Let me tell you this is a lifestyle disease and nothing else. The infections inside brain or spinal cord or irregular bowel movements or heart beats is just an overall compounded over the years effect of broken lifestyle.
Chronic fatigue stems from a vicious circle of zero physical activity + constant exposure to electronics (phone screen laptop) + poor sleep(no deep sleep) + broken digestive/bowel system in the body + anxiety + unhealthy food habits. All this can be fixed by bringing discipline in lifestyle and eating/sleeping habits.
Here is how you should proceed:
0. Buy few things first. Buy all organic stuff. Note that none of the things I am asking you to buy is a medicine. There are no pharmaceuticals or chemicals used in these things. At best they are made of some fruits, herbs or leftover of harvests. So they have absolutely 0 side-effects. To me they are not much different than regular food
– 500 gms almonds and 500 gms of walnut kernels
– Buy 250 gm ayurvedic triphala powder. Its a mixture of 3 dried fruits.
– Buy 500 gm ayurveda isabgol (called psyllium husk).
– Buy 7 lemons every week.
– Buy 500 gms of honey
Everyday routine
1. Sleep on time. Avoid working on laptop or mobile phone 1 hr before bad. Switch off all electronics.
2. Sleep as much as you wish.
3. But before you goto bed do the following:
– Soak 10 almonds and 10 walnut kernels in water (buy all organic)
– Heat a glass of organic cow milk. Make sure milk is luke warm and easily drinkable. If you are averse to milk, you can use plain water instead. But cow milk is most beneficial.
– Drink quarter a glass of milk with 2 tbsp of psyllium husk. Pysillium husk tends to stick in mouth so make sure you divide 2 tbsp in four parts and drink with quarter glass of milk. Triphala has a bitter taste and tends to dry the mouth. It might feel awkward at first but you will get used to it. This will fix your bowel movements.
– Drink quarter a glass of milk with 1 tbsp of triphala powder . Make sure you gulp the tbsp of powder and drink milk with it. Dont try to mix the milk and powder in the mouth. Just gulp triphala + milk. This will fix your broken stomach + bowel movements, give you lot of vitamins and other essentials for brain and good sleep
4. Brush your teeth before sleeping. Try to goto bed before 10-11 PM
5. After you wake up, heat 2 glass of water to luke warm temperature. Take one organic lemon and take out its juice. Mix the lemon juice in the 2 glasses of water. Now add to it 2 tbsp of honey to the mixture and mix it properly. Make sure the water is not too hot otherwise honey on mixing will break chemically and add a bitter taste to the mixture. When water temperature is right, the mixture would give just sweet+lemony taste with very less bitterness. Drink the whole two glasses of mixture. Drink slowly. This will refresh you by giving you water, freshness + vitmains of lemons and enrgy/nutrients of honey
6. Now wait for bowel movement. Dont eat anything until there is a bowel movement – this is really most important. Please dont eat anything before bowel movement. Once you feel the urge to goto bathroom, please make sure you empty your bowel COMPLETELY. Half emptied bowel is not good. If you have to make round trips to bathroom to completely empty your bowel. make sure you do it. After few days of repeating this while you will see that when your digestive+bowel system is working properly, it wouldn’t take a single trip of < 5 minutes to empty your bowel completely. Once this starts happening its a sign that the broken body system is getting better
.
7. After clearing your bowels, the first thing you should do is exercise. yes. Even if you feel a little tired, you have to exercise and that too before eating your breakfast. And you need to exercise for atleast 1 hr. Make sure you donot have breakfast before exercising. If you still feel like eating, just eat maximum one apple or banana before starting exercising. It is important that if it is possible you exercise in the sun. Yes you heard me. Prefer to exercise in sunlight. Sunlight is really important. Unless its cold outside, make sure you goto a nearby park for exercising. Gym is a second alternative but expensive.
8. Talking about exercises, I suggest you to do a mixture of running(jogging) + exercises + yoga. You should start with 10 minutes of brisk walking and when you think you have warmed up a little, start jogging. Keep running until you feel its no longer possible to run. Make sure you dont get exhausted. 10-15 minutes jogging is good. Once you have done with jogging you should relax a minute or two. Breathe in/out and relax. After that you should do a mixture of yoga + exercises. Do whatever exercises or yoga poses you like. But make sure you relax 1 minute every time you finish a set. 35-45 minutes of yoga + exercise is good enough. If you sweat during the whole 1-1.5 hours, its a good sign. But dont exhaust yourself. Feeling tired is good but not exhaustion
9. Once you have done exercising, you will obviously feel a little tired and hungry for breakfast. Please make sure you relax your body enough before you decide to take a bath or drink water or drink.
10. After finishing exercise and before having breakfast, its preferred to take a bath.
11. Now you are all ready for breakfast. Now the first thing you have to eat is soaked walnuts and almonds (peel them before eating). make sure you eat one at a time and chew it properly. Dont eat or drink anything with it. If you like milk, it is generally preffered to eat them with milk.
12. After you have finished eating almonds+walnut, you can have your breakfast. Make sure you eat lots of fruits in breakfast
13. For lunch or dinner, eat lots of green vegetables. Dont eat oily or fried or junk foods. Please avoid aerated drinks(colas), or canned fruit juices. If you want to drink juice, get fruits from market and take out fresh juice. Avoid eating meat/chicken or non-vegetarian foods in breakfast. Also dont buy frozen foods or off-the shelf foods. Also eat at proper time especially have dinner before 8 PM.
If you follow this routine for a month rigorously and without fail, you will see that all your fatigueness will fly away. I didnt intend to write this long, but somehow I felt I should help you.
referring to your disease: You may take a look at MMS (Jim Humble) and HealingCodes (Alex Loyd)
I had to look up what M.E. was – I didn’t even know about it wow. The Macro solution is cool. I still use C Macro’s for code generation and I find I use Macro’s more with C++ templates to clean things up. Thanks for writing the blog – nice work.
I’m a bit confused. I can find no research or any indication that ME (Myalgic Encephalitis, more commonly known as Chronic Fatigue Syndrome) is at all fatal in itself. Yes, the resulting severe stress shortens lifespan, but you seem to think that you are imminently going to die. I’m not trying to downplay the impact it’s having, but from the looks of it statistically you should still make it to 60+ years of age.
I am definitely on your side that it is a real, debilitating disorder that does not get enough attention, but I can’t see anything that suggests the imminent death prognosis you’re describing.
Additionally I could find no evidence that the disorder is connected to Locked-In syndrome, in fact, I couldn’t even find a single case report.
Hi Caty, I also have CFS (M.E is the same thing but with slightly different criterion – different countries use different terminology) and I’m also a programmer.
I’ve found it difficult to program again but after ten years I’m able to do it without wearing down my health as much. Unfortunately as you know CFS/ME is a multi-variant condition with similar aspects but possible multiple vectors of injury.
I never had it as bad as you but there was a point where 10 minutes of walking = 2 hours of lie down.
Regardless I’ll write this in case any of it is useful to you:
Things that’ve helped me mentally:
journal-writing
decent multi-vits (usana or similar)
meditation (vipassana, mindfulness or similar, and compassion meditation)
tai chi
finger-painting
Music – here’s a couple of free albums I find useful:
https://archive.org/details/2006-01-26.ms013n (for sleeping)
https://archive.org/details/ForLoversByAwx
https://archive.org/details/EAR026
(and anything by Boards of Canada, particularly Geogaddi)
St John’s Wort – for depression
Things that’ve helped me physically:
long-term: muscle-building, endurance work (after first 7 years of recovery).
short-term: decent multi-vit as above
vit c to get out of bed in the morning
food intolerance blood tests (to identify foods that make you more tired)
good diet
salads every day
Resolving other physical issues (for me there was thyroid imbalance)
Melatonin, St Johns Wort and Valerian (for sleeping)
I am surprised that your government doesn’t have a long-term sickness benefit as we do here. That sucks.
If you have any other questions just email me. I have a guide for long-term muscle recovery once you get to that point.
Cheers,
Matt
Hey Katy, I found your blog while googling for drawing text in SharpDX bizarrely. What a story! I’m humbled by it – and how you are dealing with terrible sickness and even death! You have a bravery and openness that is remarkable.
I wanted to encourage you to continue to fight. I’ve been through something similar to you – no where near as bad – but similar. Exhaustion, sickness, lasting years. Mine was self-inflicted. Mostly substance abuse and plenty of pent-up bitterness resulted in an overdose at age 18 and a near-death experience, followed by an unexplained viral sickness / chronic fatigue lasting several years.
I don’t believe in chance meetings, not now anyway. I’m now a Christian and have given my heart to God at age 25. This started back when I overdosed at 18. I let it all go and stared death in the face. I was ready to go, and I said sorry to my Creator for throwing my life away .., but God had other plans. A miracle happened and I lived. Still … it took me 7 years to come back and a further 8 years to truly understand the love of God for us, what it really means to be called by His name. its far more than you can ever imagine. Its more beautiful than anything else. Its not religion and its not rules. Its not anything that can be explained other than pure, gracious love, forgiveness and making all things new.
I wanted to encourage you to – you are suffering badly, you may die (you know this), but my God loves you so very much. Whether He calls you home or keeps you here, He loves you so much. And … you know? I believe God can heal anything. Even death itself. I don’t know what will happen to you, but I know anything is possible. I know my God can make all things new.
Katy, I’m sorry if I’ve been yet another preachy person in your life, that was not my intention, it was truly heartfelt and I’m praying for you now that you know and feel the love and peace of God, that it washes over your heart and if I may be so bold – that you will be healed, but if not, that you go to an awesome place.
God bless you and I’ll check out your blog – looks pretty good 🙂
You say you’ve tried everything. What about Vitamin D3? There is research linking chronic fatigue / ME with very low levels of Vitamin D3. Vitamin D3 is a pre-hormone and current EU guidelines are completely wrong about intake levels (they are too low) and sunscreen recommendations (too much)? You live in Norway, an area with very low sunlight. D3 is only really metabolised correctly when the skin produces it in presence if UVB. Taken orally it leads to digestive discomfort and potential overdose. Take a look at http://questioning-answers.blogspot.co.uk/2012/10/vitamin-d-deficiency-and-chronic-fatigue-syndrome.html for more info and if you haven’t gone down this route already, its worthy of research. Anecdotally I feel a lot better since spending way more time outside and in the sun (in warmer climates)
I just read the article. (Activated) vitamin D was one of the very first things I tried, although I took it orally, I think the point was that it was crucial to take the activated variety. It didn’t give me any disgestion problems taking 200% of the daily recommendation for 3 months (as advised by my doctor) but it made no difference whatsoever. My vitamin D levels were low but they are now normal; there is plenty of sunlight in Norway by the way, I live in the south 🙂
Thanks for your kind words 🙂
Katy.
I am so sorry you’re going through this. A life-debilitating condition like CFS must be very difficult to live with.
I’ve seen a few comments on your blog that suggest that you can get better if only you would try one thing or another. I can’t imagine how frustrating it must be to hear that over and over again.
I’m not going to tell you that you’re going to get better, but I do want to make a suggestion before you give up on getting better. You’ve probably seen one or more endocrinologists at this point. Some endocrinologists are, for lack of a better term, “more progressive” than others, and are willing to try things that other endocrinologists simply won’t try. To illustrate what I mean, I’d like to tell you a brief story.
My g/f was in an auto accident four years ago, and was dealt a mild traumatic brain injury. There is absolutely nothing “mild” about a mild traumatic brain injury. She experienced (and sometimes still experiences) many of the same symptoms you do; in fact, her primary care physician wanted to diagnose her with CFS, but agreed to wait until she could determine if she was the symptoms she was experiencing were due to something else.
In the last four years, my g/f has seen many, many doctors, including four endocrinologists, in an effort to figure out why she wasn’t getting better. The first three endocrinologists she saw were covered by her insurance, and all three basically told her that nothing was wrong with her, even though some of the results indicated, according to some studies, that there certainly was something wrong. It was extremely frustrating.
While looking for alternatives, she came across an endocrinologist that wasn’t covered by her insurance. He’s pretty well known in the endocrinology community because people from all over the world turn to him after they’ve run out of more readily accessible alternatives. She decided that she was going to pay to see him. He ran some tests on her, and determined that many of her hormone levels were abnormal. Amongst other things, she was diagnosed with growth hormone deficiency, which is one potential cause of CFS:
Click to access endocauses.pdf
She’s been taking various hormone supplements for nearly a year now, and she’s significantly better than she was before she started taking the supplements. She’s not 100% better, and may never be, but her quality of life has improved a great deal.
Having been a caretaker for someone living with a life-debilitating condition, I can sympathize with what you’re going through. I know how difficult it is to try to keep going when your body won’t cooperate. I want to urge you to keep trying. You may not find a solution, but if you do, it will be *so* worth it.
In case you’re interested, the endocrinologist my g/f went to see is Dr. Theodore Friedman:
http://www.goodhormonehealth.com/index.html
If you’re interested in asking my g/f about her experience and/or Dr. Friedman, then contact me via e-mail and I’ll put you in touch with her.
Katy,
I am sorry to hear of you illness and wish you all the best. My sister was involved in several medical condition 14 years ago, for the most part leaving her severely disabled. In the course of a 2 year hospital stay she had died three times, while in and out of two coma’s for a total of 7 months. If I can donate, I most certainly will at some time.
The demands she had placed on me and my parents faded seeing how happy she was too simple come home. Then moving on to independence in the form of getting a place to live next store to me. I am looking forward to reading more about Simple2D. I might be a little too far into the game I have been working on to change on this one. Best wishes.