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 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!

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.