Daniel P Miller

One of the most frustrating things about CFS, is that you feel like your life is on hold.   It’s like waiting and preparing for a time when you’re healthier, and can partake in the things you struggle to do now.  I have already lined up some new things I would like to try, and changes in my life that I would like to make as and when I feel able to do so. Of course, seeing others succeed and/or do the things they want, when they want, doesn’t really help.

I like to think that you go through bad times in order to appreciate the good times.  I’m not into fate or any of that stuff, but sometimes I feel as though this is a necessary passage in my life.  If I come out of the other side a much more rounded and appreciative person, then that is a positive.

I had a great week off last week.  It was about time I had some real time off rather than the multiple sick days I seem take each month.  I had an excellent final rehearsal with the band before we played a gig on Saturday at a local bar.  It went great, and I was surprised at my stamina and energy levels throughout.  Earlier in the week, I had zipped down to Bude on the bike whilst the weather was good.  It was the best ride I’ve had yet on my Yamaha.  Winding roads, long straights, bright sunshine; it’s the kind of stuff every biker dreams of.  Rarely have I felt more alive than during parts of that ride.

My Yamaha Fazer 600cc

Bude was busy…

Also on my week off, I went for what was the longest road bike ride I’ve had since falling ill.  My housemate wanted me to show him so local rides that I used to do out in the countryside.  I considered the impact it might have, but I felt in good shape so I accepted.  We probably only did about 6 miles, but the terrain undulated with some steep climbs.  One hill in particular used to challenge me when I was fitter, so I did wonder what it would do to me now.  As soon as I hit the climb I settled down into a good and slow rhythm. I made it up with room to spare and it was a real triumph.  The rest of the ride was fantastic, with gorgeous views over the Exeter countryside.

And this week?

I’ve had a shit week.  Monday I worked up until early afternoon where I crashed.  Tuesday was then a write-off, as is today.  But don’t be misled.  Although I’m feeling rough inside (and probably look it from the out!), I am feeling surprisingly upbeat.

In a moment of desperation, the other day I Googled: “CFS I’m going crazy”.  Lots of websites were shown; mostly with people asking questions about the illness and what they can do.  Amongst the myriad of results was a Tumblr blog by a fellow sufferer.  In it, she talks about “small victories” with CFS - everyday results for people who are in good health, but big wins for people with chronic fatigue.

This got me thinking about my small victories on my journey so far.  I have mentioned three of them already so far in this post: getting back on the bike, being able to periodically ride my road bike, and getting back with my old band and gigging.  These are three big wins for me.  I questioned all of them at the time.  Can I afford a bike?  Will I have the strength to ride it?   Do I have enough energy for the band?  I couldn’t find any answers.

Other wins?  I continue to be able to work, just about.  I purchased a drum kit at the beginning of the year and satisfied a long-time goal to play.  I play most days and continue to improve.  I have learnt to be a lot kinder to myself.  But perhaps one of biggest wins so far, is that I’m looking beyond the illness.  This week, I’ve thought about what I’ll do when I get better that I can’t do now.

Boxing has long since been one of my favourite sports, and I’m big into training and keeping fit, so I have decided when I’m better, I will join the local club to train.  I have also decided I would like to join the local triathalon club too.  If anything, both will be a good social crack, but I love a challenge, and I think I’ll enjoy both disciplines.

I say it’s the biggest win because I’m looking past the illness.  I’m not getting as down as I was about feeling rough.  I’m accepting it at any given time.  I know I’ll get better.  Even though we’re suffering, we can still learn and do new things.  We can also still do the old things we used to do in moderation too. 

What has your latest win been?

Check out: http://runandgames.tumblr.com/

In my own experience, when I’ve had something on my mind; I’m worried or anxious about some forthcoming event, or something that’s happened, I feel more fatigued than I would normally do.  This has led me to believe that mental strain outweighs physical strain when it comes to triggering Chronic Fatigue symptoms. 

If you were anxious for half and hour, then the next day you went out for a half an hour bike ride, I’m willing to bet that the anxious half an hour would result in a greater amount of fatigue than the bike ride would.  Ok, both depend on the person, and a lot of other variables, but I think it’s a fair comment in general terms.

I read an article recently that talks of these “stressor” factors and how you must remove them:

“In order to recover you have got to do several things.

The first is that you must remove the stressor factor or factors, because it is quite clearly impossible to get better if you are still allowing your immune system to, metaphorically, continue to bang its head on a wall.”

Source: http://www.me-cfs-treatment.com/triggerfactors.htm

So basically, stop worrying, stop getting anxious, and don’t let things play on your mind … If only it was that easy!

Anxiety for me has always been a big pain in the proverbial.  I remember when I was younger having anxious moments before going to school, before I went to football training, before I played a game on a Sunday, and when I was trying to sleep at night.

Is Chronic Fatigue an acllumulative effect of worry, anxiety and self-deprecating thoughts over a long period time?

Anyway, I read an apt quote the other day defining anxiety as:

‘Not trusting the flow and process of life.’

If you suffer from anxiety, or you have suffered from anxiety in the past, I think you might find this statement very accurate.  Looking at when I got anxious in my younger years mentioned above, most of it was because I was would not let the process of life do its thing.  Instead, I would try to predict each event, and run each scenario through my mind to see how it might play out.

A good statement to say to yourself when you’re anxious is therefore:

‘I love and approve of myself, and I trust the process of life.  I am safe.’

I read an interesting article recently where a professional put forward a case for CFS being linked to the liver.

I don’t know about you guys, but my right side around the stomach area has been tender for awhile, and coincidentally, that’s where the liver hangs out.

Interestingly the article also talks about how to cleanse the liver, and one such method involves kicking off your day with a pint of water with freshly squeezed lemon juice. 

For around a week or so, I have been starting my day with squeezed lemon, lime and orange topped up with water, and I can report a little improvement in fatigue so far.

The article and link to liver cleansing techniques is here:

http://www.care2.com/greenliving/chronic-fatigue-syndrome-linked-to-liver-function.html

Another find is Yoga. Ok, it’s nothing new; Yoga has been around for years, but I recently found a sequence of Yoga moves posted on YouTube specifically aimed at people who suffer from CFS and general burnout.

The vid is by an Aussie lady called Allannah, and again, I can report a good improvement having practiced the positions over the last two weeks. You can find the vid here:

https://www.youtube.com/watch?v=3kYJJjnqebQ

Good luck!

I like many people with CFS tend to take a cocktail of vitamins.  Hell, when I first got over the virus and got into the post-viral after effects, I looked for any supplement that said “this will aid your immune system” (or words to that effect) on the tin.

In a considered move two weeks ago, I decided to stop taking everything; multivits, zinc, vitamin C, all of it. My diet is pretty good - lots of fresh fruit and veg, so why bother?

Has it made a difference? Not one bit!  Haha …

No, being serious now, the whole life cycle of CFS/ME just puts your mind into a tailspin.  You constantly look for a solution, a way out, a way to improve just that tiny amount, and taking loads of vitamins is one easy way to believe you’re helping.  But ARE they really helping?  Might they be a placebo? 

Maybe the immune system needs to build its strength back up without being diluted by a load of supplements?

Who knows …

It’s the question marks that make this illness so debilitating.

I had a moment earlier where I was thinking about my prospects for the rest of the year and beyond. 

I also started thinking about the sacrifices I’ve made and what’s different in my life now compared to when I was 100% healthy. 

Also, what would I be doing now if I wasn’t so damn fatigued all of the time.  I came to an interesting conclusion …

Prospects

It really did dawn on my earlier that I could be in this for the long run. I’ve had a post viral ‘problem’ for a year and half now.  I steer clear from saying to anyone that I have ME/CFS etc, etc.  Largely because I’m probably in denial and still believe I will wake up tomorrow as right as rain.  If 100% was me at my worse, I guess I’ve made a 20% recovery up to now, which though is great, living life at 80% of your capabilities is not fun.  Ok, perhaps I’m underestimating my recovery figures due to being in the situation, but that’s where I believe I’m at.

As many will know, this is a long term illness - 10, 15, 20 years - a lifetime even people have this for.  So where does that leave me?  I guess the question is, if I felt like I did now in ten years, would that be ok?  The answer to that is yes, because it has to be yes.  What choice do I have in the matter?  Giving up would be suicide, and I don’t know about you guys, but there’s so much beauty in the world and great experiences to be had that I wouldn’t give up for anything.

I’m ok if I have CFS for 10, 15, 20 years, or even for the rest of my life.  I choose to accept that I have this illness.

Sacrifices

If I’m really honest about this, I’ve made no sacrifices at all, I just do less of what I used to do. I can’t think of one thing that I’ve given up since having this illness - I’ve been in a band that regularly gigs and rehearses, I still exercise, I still see friends, I still work (dropped a day a week), I still get immersed in music and my instruments on a daily basis, I still travel (our band went to the Alps for a tour back in February), I still see family, I still go shopping, I still eat a whole packet of biscuits when I really shouldn’t…  The list goes on :)

All of the above are made that much harder for feeling tired and fluey (you know the symptoms by now), but I STILL do them.

I accept that I do less of what I did before, yet I’m still able to do the things I love.

Things that have helped me

In no particular order except for number 1 :)

1) REST!
- Supportive friends and family
- A compassionate and flexible employer
- My Doctor and local support teams
- A determination to get better
- Self-help work on thoughts, worries, guilt, anxiety etc *
- Supplements (no proof whether these work but who knows) **

* I believe that self-help work is one of the best things you can do, and one of the most rewarding journeys too.  I had several episodes of anxiety, guilt etc, that I recognised weren’t helping me out. 

I can thoroughly recommend this book to anyone.

The title sounds drastic - don’t be put off by that.  It’s full of really good techniques to make you feel better about yourself from day to day.

** I tend to have quite high doses of Vitamin C and Zinc.  I also take multivit and from time to time fish oils and magnesium.

If you have any similar stories, comments, questions, share them!

Today is ME awareness day.  Also known as Post Viral Fatigue, Chronic Fatigue Syndrome, and no doubt many other tags, ME affects over 250,000 people a year in the UK.  Even though so many people suffer from it, ask the man on the street and he probably wouldn’t know what it is.

Flea (Chili Peppers), Stevie Nicks and Cher are amongst many ‘celebs’ that have had the illness.  It is said that people who are go through severe trauma or stress are predisposed to the illness, but from my own experience, I can testify that viruses also can give way to CFS, as I caught a virus over a year and a half ago now that led to the symptoms that I’m feeling quite accutely now.

Some things that have helped me through so far have been: a supportive employer, music, understanding friends, understanding family and understanding people in general.

Surround yourself with positive and understanding people, tell yourself that you’re getting stronger everyday.  Most of all, stay positive.

I’ve been iffy about posting this, simply because I’d rather keep my personal life to myself rather than splash it all over a blog, however, because this has consumed my life so much in the last year, I feel it’s worth a post.  Hopefully the thousands out there that suffer from something similar may get some value from this and find some solace as well…

There’s little point me talking about the ins and outs of CFS, as there’s plenty of that all of the web, however, this is how it has shown up for me.

In February I contracted some kind of virus.  Doctors and specialists claimed it was a ‘Glandular fever type/like’ virus, and that it would be out of my system around July.  Writing this now in October, and after two days of being completely washed out, it’s pretty clear it’s still around and has gone to the post viral stage (my last full blood count came back normal).

In terms of symptoms, I have headaches, weakness, muscular aches, nausea, dizziness, debilitating tiredness, amongst other symptoms.  The combined effect of these symptoms is dramatic.  It basically counts me out of 90% of the activity I used to do, and has had major implications on my work and social life.

As of now I am attempting now ‘manage’ my way through the fatigue by taking it super easy and not expending any unnecessary energy.  The NHS refers to this as ‘pacing’, and it is their number one approach to managing the illness, and to have more ‘good’ days than bad.  For me it has worked to some extent, although looking back over my diary (I keep a diary of how I feel from day to day), it’s clear that sometimes the onset of the severe symptoms is pretty random (very frustrating).  From my experience, it is the mental activity that really wipes you out, not the physical.

The hugely frustrating factor is that CFS/ME is incurable.  Even today, modern medicine does not know why it effects people, and what to do to rid the person of the virus once it takes hold.  Another frustration (for me personally), is that I am 25.  25 and I can’t so much as go for a bike ride or walk into town anymore through fear of flaking out in the days that follow.

There is information all over the web about diets to follow and supplements to take.  I have read a lot.  There’s some really drastic stuff going on out there, but this is only testament to the mental factor of this illness.  It gets under your skin, and makes you desperate for a solution.  Short of all the drastic stuff, I believe that a healthy diet, supplements to boost you where necessary, and having a sensible outlook in terms of what you can and can’t do will do the job in end.  Keep the faith!

In terms of supplements; I take a whole array.  I really can’t say whether they are effective yet, as it’s too early for me to tell, however, all of which are generally regarded as useful for people with CFS:

- A decent multi vitamin
- Slow release Vit C
- Ginseng (Korean, Siberian etc)
- Ginkgo Biloba
- Magnesium
- CoQ10
- Coconut oil (think cooking oil)
- Rhodiola Rosea
- Omega 3
- A probiotic (not Yakult or the like - get a capsule supplement)

If you look on the web, you’ll see many other ‘recommendations’ too: L-Carnitane, Echinacea, Golden Seal, Milk Thistle, Flax Seed Oil, H202, Royal Jelly, amongst others.  I have not tried any though.  It’s always worth using a little caution with all these supplements and ‘gimmicks’ too.  Box clever - find out everything you can about it before you commit it to your body.