Hey, I thought to write down a bit about my illness the past two years.
October 2012, I went home from work with a diagnosis Fatigue Syndrome. A very tough situation where I had a lot to do and I really enjoyed to work as a ICT Admin. I have worked with this for 14 years.
In retrospect, it was a wise choice to make contact with the healthcare system, it had not been so happy to “work on” for a while.
I was on sick leave until April 2013 when I started working 25% and up to now I have fluctuated between 25% – 75% work.
I’ve tried 4 different medications that should help me gain strength and stamina.
Meanwhile, it has been added to diagnoses from psychiatric consultant, such as depression and a variant of ADHD.
This package of diagnoses gives me:
• A fatigue that does not help to sleep away
• Short-term memory, forgetting names, difficulty typing on keyboard, forget times and schedules
• Difficulties to answer the phone, visit family, children and friends.
• “Multitasking” does not work at all
• Night Sleep is very poor, despite medicine
• Can´t do any “projects” at home, just simple chores (if I have the energy)
• I often go away when it gets a lot of people around me
You would think that I should soon recover after such a long period of illness, but psychiatrist and other doctors believe that this kind of affliction “take time” before I am myself again.
As you can see on this blog, I have been out with the kayak and tent on 2-4 day trips, this was great for a long time, but this year it’s less paddling and more to sit on a rock and watch the sunsets. I also have to rest many times when I pack up or down the camping spots. I have also had problems remembering to pack in the right order without forgetting something.
An awkward situation is that you can get a picture of me as lazy and forgetful, but I focus on getting well instead.
I do not know what the interest is on this, but this is my life right now.. 🙂
Stefan V
VANERPADDEL 
Thank you for sharing this. It’s a post I can relate to very much. I have fibromyalgia, COPD, and ADD as well as a few other things. Most people do not really understand what it takes to just get through the day. It’s not easy by any stretch of the imagination. Especially when you do not know from day to day how you will feel. I was also very active – it has been very difficult adjusting to not being able to do the things I used to do. But as you say – this is the way your (and my) life is. 🙂
Hi Jackie and thanks for your comment, my wife has fibromyalgia so I know the difficults that brings.
Wow, it’s a difficult life when one has these types of diagnoses. Sometimes other people don’t understand our limitations, but it’s great you are able to enjoy nature. I enjoy your photos very much. Take care and be kind to yourself 🙂
Thank you, Rosh.
It’s not easy to live with and difficult to get accepted by other people, you don’t like ill, but what do they know!
Stefan-
It seems to me that you are taking positive steps to over come the challenges of your illness-
– not giving up
– expanding awareness through writing and photography
– keeping your connections with nature ( ❤ your "Paddle Distance" widget)
Best wishes for your recovery-
Jane
Thanks Jane, I´m trying.
That’s very important 😉
I also love your photos and appreciate the courage and perseverance required to do what you are doing. I have suffered most of my life from varying degrees of depression and anxiety. Three years ago I hit rock bottom after a serious car accident. I did not move from my chair for over a year, so consumed by terror. Like you, sleep was not my friend. Doctors did not have a name for my condition, nor did they offer any help except for medications that simply dulled my senses. I began my path toward healing when I reached out to a naturopath who treated me with herbs, guided imagery meditation, whole body healing and finally in the third year nutritional evaluation and natural supplements. I still struggle when under stress, but I have become much more resilient. That is my goal. Resilience. Traditional medicine does not always give us what is best for us and though I went into the process with a healthy dose of skepticism, I have now become a believer. Have you tried the wholistic approach to your healing?
You don’t sound lazy. This type of illness does take time – lots of it – to “recover”. Try not to beat yourself up for the symptoms of your illness. I experience similar symptoms and therefor understand how it impacts on day-to-day living. Staying active is probably one of the best things you can do for yourself.
Hi Cat
They told me that the best “healing thing” is to be just under the limit of what you can handle… That is nearly impossible. 🙂 As time goes I learn to listen to body and mind
Well, I dunno about staying under our particular limits, sometimes we’re not always in the drivers seat!
Exactly, sometimes it’s not under my control..
Dorothy, I´m happy for you that it´s going to the right direction.
After the vacations on this summer, I´m gonna contact a KBT specialist, I thing the translation is like “Cognitive Therapy for Depression”, several friends says that is great stuff, I hope that works.
BR
Stefan V
Hang in there.
A day at a time.
And sometimes, a moment at a time.
Glad you shared.
as my mother always said “Everybody is dealing with something.” We all are.
Take care.
Thank you Cynthia.
I commend you for blogging about this – you’re a bloke who’s doing his best to rise above what is becoming a quite common affliction, but remains one that does a lot of harm in our society.
Cognitive therapy is apparently very good; and it certainly couldn’t cause you any harm: so you might as well have a go, eh ?
Meanwhile, blogging at least forces you to interact with others – even if it’s at a distance ! 🙂
Exactly about the blogging, I can stop talking with you anytime I wa.. 😀
Thanks M-R, as you say, there are no harm to test this cognitive thing.
I have been an athletic adventurer all my life. I was diagnosed with chronic fatigue in 2003 or so. I went from running 8 mi/day to requiring a huge effort to sit up — wouldn’t have believed it if it hadn’t happened to me. I did recover in a year or so, Sending a big thumbs up your way.
Thanks Aggie. I was also thinking the same; I´m not the guy who get stuck in any “syndroms” I liked when there was too much to do, too many projects.
Think about yourself before the “fall.” How many speeds did you have? A friend once asked me this question, and I immediately answered, two. He said one of his children was like me, and another had several speeds. The concept of the people with the multiple speeds fascinates me.
Never think of yourself as lazy. You are hurt by negative self-talk, something you don’t need when you’re already hurting. I have much the same as you + a few more… Now arthritis is affecting my hands and I practice EXTREME self care whether others get it or not. It’s vitally important for my well-being.
And being able to get out there in your kayak is hopefully happening for you more often than not. This illness along with the brain blips can be disheartening… We need each other and I’m glad to meet you this morning! 🙂
Hi and thank you for the comment.
I think the time I spend in the kayak is great but it takes strength also afterwards. I am constantly searching for the level I can work on.
I´m getting better and better on that. 🙂
My english is this bad, I’m working on that too.. 😉
Thank you for your kind reply and have a wonderful day! 😊
Thanks for stopping by my blog and for being real about your diagnosis. You have the spirit of an explorer so I know you will continue to push through. Love your images.
Thank you! 🙂
Stefan: I’m so sorry to read about this. I’m glad you get out and exercise and enjoy time with your wife, brother, and dog. (We are lucky you share such wonderful photos and stories!) The times I’ve had my deeper depressions, a combination of family support and getting exercise (forcing myself to exercise, honestly) helped me, for what that’s worth. In any case, I wish you much peace and healing!
Thanks Leigh for your nice comment.
Some days it´s okey for exercising, other days are not so good for these activities, due to lack of strength.
As long as I can maintain a good level, I think it is okay.
Your comment made some peace and healing, Thanks. 🙂
BR
Stefan V
It does get better! You may not believe it now, but you will recover your memory and strength. Personal experience. But you must take care, as it sounds like you are doing. Don’t be afraid of rest. This too shall pass. xo
Thanks, I believe you but the time is soo loong.. 😉
This is great support. I’m glad to hear you got better, and glad to hear Stefan will.
🙂
It’s hard to put a ‘like’ to this one because what you’re experiencing is no fun at all. I had an episode of chronic fatigue back in 1994 while taking care of a sick husband. Somehow I went into remission, but sadly the symptoms you listed seem to be back again. Life isn’t much fun when you’re too tired to enjoy it. Hope we both figure out a way to overcome this awful affliction.
Thank you for stopping at my blog.
Thanks Gunta, When the best medicine is rest and wait, there are absoluly no fun in it. We have to do the best of the situation. 🙂
BR
Stefan V
I admire your courage to talk about your illness. It’s these “invisible” mental illnesses that are still misunderstood that can lead us to feel alone and hopeless. I’m sure by now you know though that you’re not alone, and that this condition doesn’t define who you are or what you can accomplish. I’m really glad you’re spending some quality time in nature (I’m extremely jealous and envious of your beautiful photographs). I think nature can do wonders in the healing process, and I can completely relate in that kind of restlessness and disappointment you have upon hearing that “it takes time,” to return to,or find our new, “normal.” Just know that you’re in my thoughts, and I really appreciate you stopping my my blog and thus, leading me to yours. I very much enjoy it here and look forward to seeing more of your adventures!
Thank you so much Adelie, I believe more and more that it was a good thing to write down my “situation”. It´s have been a wonderful respons and i learn more about the symtom.
….. and I need the practise on writing in english. 🙂
Thank you for your words Adeleie.
Hi Stefan,
If you did not write this post about your diagnose and condition I am pretty sure nobody will know that you have some difficulty. Your writing and your pictures are clear and beautiful and there is no any evidence you thinking not logical or doing something wrong. You are the strong and brave man with a lot of experience and knowledge that can help you to stay and fight you illness. Do not give up! I believe you’ll be OK. Just keep going with your writing, make pictures, talk to people and share your interesting life experience and ideas.
Good luck, my Friend.
Thanks Alexander, comments like these make me feel great. 🙂
BR
Stefan V
Stefan, my please. I am glad it helps you. The WordPress community is a great one. Here you never feeling lonely, all the time you can count on support and understanding.
Have a nice Day!
Thanks for sharing your story. The body will heal itself. Keep a positive attitude, meditate and tell yourself you are well and healthy. And thanks for the follow. I hope some of my posts help give you the positive attitude you need and you will be well soon. Look forward to hearing about your progress. All the best, my friend!
Thanks for your kindness, I get so much positive energy from comments like yours. To write about my situation was the best I could have done.
Thanks again
Stefan V
Welcome to my world, Stefan.
With CFS (Chronic Fatigue Syndrome, FM (Fibromyalgia) & HCM (severe Hypertrophic Cardiomyopathy), I can appreciate how you feel.
I follow the Paleo diet which has given me some success in reducing my symptoms, but taking up Photography and slow walking in the fresh, as well as taking early retirement from working and reducing stress has also had a positive effect.
Nobody, and I mean nobody except a fellow sufferer or chronic illness sufferer can understand the fatigue from unrestorative sleep and chronic pain, but if you learn how to pace your life with good fresh healthy food you will eventually find some improvement.
Thanks for following my blog. I will follow yours with some interest (as to your progress).
Reduce stress and try to keep your focus on things like time in the outdoors and Photography. Thinking about your health all the time is the worst thing you can do.
I have been an amateur photographer for some 4 years now and it is the joy and fulment of a meaningful life for me.
Best Wishes
Vicki (from Melbourne, Australia)
Thanks Vicki.
Hi Stefan, I had this illness as a teenager. It’s not fun and took a long time to recover fully, but I did recover and so will you! My best advice echoes Vicki’s above – do what you need to do to be healthy (good food, rest etc) but above all, don’t let your illness define you! Looking at your blog though, I’m pretty confident you’ve got this covered 🙂
Hi Chez, I am sure that I are getting better but it takes so long. That is a little frustrating.
Thanks for your kind comment.
Stefan V.
I certainly understand.
I did the same computer job for 15 years, and I spent a lot of time stuck in traffic going to and from that job. I liked the job, but I was getting more and more tired.
Sitting and working at the computer all day long, and then sitting stuck in traffic for hours–I found it was getting harder and harder to fall asleep at night, even though I was mentally exhausted. I spent many a night lying awake in bed, periodically looking at the clock and watching the hours tick away. Auuugh! As you know, not sleeping at night makes it extremely difficult to get through the next day.
I no longer work full-time. I’ve been spending more time outside these days, enjoying nature. More time connecting with nature (instead of the computer) seems to make it easier for me to sleep at night. AND IF I foolishly spend more than 30 minutes on the computer (without a break), I have 2 computer screen blockers who will force me to get up and do something else for a while, I wrote a post about them. They do a great job! : ) http://storieswithnobooks.com/2012/12/10/low-tech-computer-screen-blockers/
Wishing you the best,
Mary
Very beautiful screen blockers.. 🙂
… and I understand every word of your comment.
Thanks Mary
BR
Stefan V
Hej Stefan! Jag fastnade direkt för detta inlägg eftersom jag känner igen mig själv. När jag ser dina fina naturbilder förstår jag också att du är på rätt väg. Båda har vi råkat ut för att älska vårt jobb och vårt liv, men inte förstått att bromsa i tid. Själv fick jag utmattningsdepression år 2001 och kunde inte förstå hur eller varför. Jag trodde att sådant kom om man vantrivdes och hade det besvärligt med livet. Jag har jobbat och läst på universitet samtidigt under hela mitt vuxna liv ( 30 år) och slutade med universitetskurser först 2006. Men, år 2000 bytte jag arbete och blev gymnasielärare. Älskade det och jobbade hårt och engagerat, men gav tyvärr inte upp att studera samtidigt. Det var ju så roligt! Efteråt har jag läst om att det här kallas “honungsfällan” – hela tiden har man roligt , trivs och vill bara mer, men lyssnar inte på vad den egna kroppen säger.
Det blev som du beskriver det…kunde inte sova, inte tänka, inte läsa en dagstidning och än mindre en bok. Ingen koncentrationsförmåga och bara tårar. Botemedlet blev ungefär det du gör nu – att vara ute i naturen. Att försöka låta bli att stressa och att inte ta på sig för mycket arbete. jJag kom tillbaka till 50% efter några månaders sjukskrivning, men klarade knappt av det. Sommarlovet räddade mig. Idag jobbar jag 80%, men börjar känna av symptomen igen. Koncentrationssvårigheter och enorm trötthet.
Jag har hört mycket positivt om KBT och naturligtvis ska du pröva! Men åtminstone jag fann att det bästa för mig var samvaron med natur och djur, med hundarna och kameran. Tack så hemskt mycket för att du följer mig – nu följer jag dig tillbaka. Vi sitter lite i samma båt (!), och jag njuter av dina foton.
Lycka till på din resa!
Ann-Christine
Hej Ann-Christine, härligt att se svensk text. 🙂
Jag slåss mot tangentbordet mera när det är engelska, har nämligen svårt numera att finna tangenterna (fungerade hyfsat innan eländet).
Förstå mig rätt när jag menar att det känns positivt att läsa om andras liknande åkommor.
2014 har jag hittills jobbat 25%, 50% är för mycket och 25% känns för lite. Det känns som ett ständigt famlande i mörker (trots att jag nog framstår som en glad och positiv gubbe) 🙂
Jag har fått tid till “KBT-prat”, det ska bli spännande.
… och tack så mycket för ditt inlägg, det värmer.
Stefan V
Kram. Det ska bli intressant att höra vad du tycker om den terapin.
Jo, jag tänkte skriva ned vad som händer och hur det känns allt eftersom… on English. 🙂
Tack.
Stefan,
This post about your health gives me even more appreciation for your blog.
Elouise
Thank you for your kind words.
Stefan.
There are numerous ‘invisible’ illnesses like Chronic Fatigue Syndrome /Myalgic Encephalopathy (aka ME)/ Fibromyalgia etc that are very difficult for non-sufferers to understand. Having known people who suffer with ME, I have seen first hand how extremely debilitating both physically and mentally such illnesses can be. I think trying to find just the right level of daily activity for yourself is one of the biggest but most necessary challenges anyone with these illnesses faces. Another blogging friend in Australia, who herself suffers with several of these ‘invisible’ illnesses, has been working to try and raise awareness and help others to understand these conditions – http://mychroniclifejourney.com/
Thanks for your info, it was a good thing to write about my illness on my blog. I have got a lot of knowledge and positive energy from the comments and emails.
Thanks for the link.
BR
Stefan V
You are welcome, Stefan 🙂
Thank you for sharing. Having had Lyme Disease and being 98% over it (with some big 2% exacerbation and unrelenting fatigue) I understand what you’ve experienced. Hope you get this under control and manage your life with good quality. Paulette
Thank you Paulette, I hope that too.
BR
Stefan V
I’m sorry to hear of your illnesses. I have heard that it takes time to recover from Chronic Fatigue Syndrome. But the good news is that it can get better. I hope your road to recovery is an expressway and that you feel better soon.
Thank you, I hope that also. 🙂
BR
Stefan V
Living with chronic fatigue and pain is not visible to the outside world, so I know how at times depressing this can be. Having lived with FMS with its various flare ups since being diagnosed in 2002. Medicines didn’t help and so I set about healing from within.. By Following Qi Gong exercises and having acupuncture treatments which helped enormously..
I admire your courage in not giving in and the thing as you must well know is to pace one’s self ‘little and often’ has been my motto.. with achievable targets ..
I hope you continue to grow from strength to strength on your road to full health.. In the mean time enjoy nature and all her gifts she is the best healer I know… 🙂
Blessings to you and yours..
Sue
Thank you so much Sue.
BR
Stefan
Thanks for sharing, Stefan…
Wish you lots of courage… !
Thanks Nil.
It must be so frustrating to feel like this for such an extended period of time. It’s good that you write about it though. People do tend to judge others, especially when they don’t understand the situation. Writing about your illnesses will help others to understand more about them.
Hi
I have received so many positive responses after I wrote this post. It feels great to get encouragement and advice the easiest way to go through sick time.
Stefan
Hello Stefan! I’m so glad that despite all your ailments you still make the effort to enjoy nature. I love your photographs. I love hiking, kayaking and all things nature too. All the best to you!
Thank you!
BR
Stefan
I had a friend who was diagnosed with Chronic Fatigue Syndrome and forced to quit working. Too many years later he was discovered to have been misj-diagnosed; in fact he had contracted Lyme disease, probably when he was in his early twenties and did a lot of orienteering in the woods of the East Coast US. Lyme is very hard to cure once it has gotten a grip, and some doctors refuse to recognize it as a chronic disease at all.
I do not know if Lyme disease is strictly a US hazard, or if there is an equivalent tick-borne disease in Sweden. I contracted Lyme myself some 25 years ago but fortunately I had a good doctor who diagnosed it promptly and treated me with heavy doses of cortisone as well as other anti-virals which knocked it out.
Best of luck to you –
Hi, we also have tick-borne diseases including Lyme.
I never had a tick on me, perhaps they don´t like me. 🙂
But as you say, Lyme disease has many faces so it´s sometimes difficult to make the right diagnose for the doctors.
BR
Stefan
Thank you for following my Photo blog Stefan. I have written about depression and anxiety on my othe blog: http://smiffy37.wordpress.com which may interest you. Your photographs are a joy to view! best regards, Eileen
Thank you Eileen.