Living with CFS/ME …

September 2007
I do feel well. I am planning my life. I am taking on more work not just massage patients but other voluntary work as well which includes working with other people – nice! I am writing a book, something I have wanted to do for so long.


Before I got ill, I worked very hard. I knew I was working hard because of outside factors. I felt I had to prove something to someone. Then I literally hit a brick wall and everything ground to a halt and ME was diagnosed.

I looked back to a time when I was happy and coping with life. I had to go way back. Back to when I was 2. After that factors happened – and coloured the way I coped and led my life.

I grew up feeling miserable, lazy, fearful and thick. I was none of those things but a battle started within myself. A battle between working hard to prove to myself and others that I was none of the things I had taken on board when I was teased or bullied or taught the wrong things.

Now I can start again. I can look at life and see what I want to do and what I am able to do. It is a luxury to be in this place, to be able to choose.

Today is a really bad day ME wise!!! I think I may have eaten something that contains an allergen and it is making me feel so ill!! But I feel well because I feel hopeful and in control and focussed. Just need my body to catch up.

Maybe ME is a viral infection but it is giving me the opportunity to know what I do want out of life.

hey ho

August 7th 2007
2008 that rings a bell. An alarm bell. In fact it is June 2008 that is ringing the alarm bells. Stupid to begin getting stressed and working out a strategy because of a date. June 2008 is when I will have my benefits assessed again.
I would LOVE to swap the benefits for earnings. O how I would love that! The longing makes me weep.

What started this chain of thinking was me doing the ironing and yesterday I vacuumed the house. It took me all day to do something which bME (before ME) used to take an hour. Instead of showering this morning I had a wash and got dressed. Today I feel in control. Today I feel good. And then I remembered June 2008. Would they still accept my incapacity if I felt like this in June 2008?

I often wonder if the final hurdle of being rid of this illness is getting rid of the benefits. Getting rid of the guilt.

I was doing the ironing and suddenly my arms felt heavy so I have stopped to lie down on my bed and tap away on the laptop on my knees. Was it the ironing that caused my activity to stop or the thoughts?

Towards the end of the week before last week I was feeling great. So … (can you believe the thinking here?) … I STOPPED the supplements? I actually thought to myself that I didn’t need them anymore! Naturally, slowly over the days my sleep got bad and disturbed. The cramps and pins and needles returned. My digestion turned sour. My thinking was appalling … forever stopping in my tracks and wondering what I was going to do next, breaking out in sweats over the slightest thing returned, and so did the palpitations with a vengence. You know that feeling of dread while you are trying so hard to allow sleep to pervade your brain and you know something is happening to your body and it feels terrible but you can’t work out what it is? That returned. Now 4 days later and taking the supplements I am feeling better.

The supplements are Higher Nature Omega 3 fish oils x 3 a day. And Solgar Calcium, Magnesium and Zinc supplements x 2 twice a day.

The calcium taken for a year now has improved my strength. I now can say Yes to most things. However I still need the period of rest because of pay-back, but the rest seems to be less – hours instead of days.

Hmm … it is really nice lying here, I think I’ll go to sleep. Did I say I felt better today? Huh!

Must stop the negative thoughts, must stop the negative thoughts, must stop the negative thoughts, must stop the negative thoughts …

Is that negative? To tell yourself to stop something that is negative? Or is that positive? One can see Phil Parker’s theory here with his Lightning Process therapy.

No I don’t believe that one can stop the negative thoughts but one can DO something else to give your mind something else to think about.

Or all this thinking will drive one insane. Doing something physical that is good. O but I can’t I’m too exhausted.

I’ll read my book, write some emails, get on with the book I am writing (got stuck though on some technical details and I think it is all going pear-shaped.) Watch Diagnosis Murder! Ha! Yes!!! My rescuer!!! That does switch my brain off. Thank you!!

Colour code: yellow with some orange.

April 13th 2007
I cannot believe it has been more than a year since I last wrote here. It has been interesting reading back on how I was last year. I did totally give up massage for about 4 weeks until a neighbour telephoned and asked me to treat a friend of their’s because he was in agony and he felt sure I could help. How could I refuse? And I have to say, his treatment programme with me was very successful and because of that I was back in business again. I can’t let people down and I can’t give up massage or it won’t let me give it up. It is very rewarding helping people get over their pain.

In about June 2006 I remembered that a hair analysis test in 2003 had shown I had ‘alarming’ amounts of calcium in my tissues and the Nutritionist at the time advised me to stay off calcium and calcium rich foods and to eat more protein. After maintaining her regime of keeping off various foods and swallowing an inordinant amount of supplements I got worse. So after 3 months of almost complete comatosis, I stopped the regime and felt better or rather I felt as I had been before the Nutritionist’s regime. It occured to me in June 2006 that perhaps I had too much calcium in my tissues because it was being leached from the bones and that if I took more calcium the message would feed back through my system and stop the leaching from my bones (if indeed that was happening).

The result of an increase in calcium and magnesium increased my sleep, helped my rest, stopped the palpitations, stopped the cramps, reduced the muscle pain, reduced the sensitivity to alcohol and increased my confidence in saying Yes to social occasions. I cope better with stress now too.

I spoke to my GP because I was concerned that I may in the long term be causing harm by taking more calcium despite the obvious benefits in the interim. She advised that the only way to truly know would be to stop the supplements for a month and then have a blood test. I stopped the calcium for one week and felt awful. My sleep was disturbed, I was fidgety and in pain, my cramps returned and muscle spasms and the palpitations came back. So I called the GP and told her the problem and went back to the supplements and I still haven’t had the test.

Today Friday April 13th I am resting in bed after a busy day the day before and naughty, naughty eating a slice of bread and butter (two things I am allergic to)!! But after just a couple of hours I am feeling better so I do think that with the calcium supplements my recovery is quicker.

Calcium is vital for many functions including nerve impulse. It should be taken inconjunction with magnesium.

I still have CFS/ME, I still can’t do what I used to be able to do. I still have days when I can’t walk because I did too much the day before. But the symptoms of CFS/ME are not so detrimental just so long as I keep off the foods I am allergic to and keep up with my supplement regime of fish oils, evening primrose oil and calcium, magnesium and zinc. Also digestive enzymes from time to time!

And freshly brewed caffeine coffee!! Yum yum.
(back on caffeine after someone told me that caffeine was a painkiller – which I knew – but someone telling me to take caffeine – well I wasn’t going to argue!)

(today’s colour code is yellow)

February 15th 2006
I am on the settee on my back typing this. No energy for joking today – I’m all serious. It has been 3 months almost to the day since I last wrote. This is because I had to concentrate on pacing myself to buy christmas and getting the house ready for visitors and then spending energy enjoying christmas!! Which I did, very much. It all led me to collapse for weeks and weeks afterwards.

But now I feel have turned a corner.
After nearly 3 years of M.E I have given up work.
My work during these 3 years was voluntary once a week and perhaps one massage client in my home on average once a month.

I began the very, very part-time work after a year of being off full-time work with this M.E.

I felt guilty not working and I thought I aught to make an effort to get back into the working environment. I felt very heroic while I coped.

But the reality is that it has been such a struggle and I used to work myself up into a stress during the week to prepare for a client if I had one or I would be stressed all week waiting for the day when I did the voluntary work. After the work I was jubliant and I thought that it was doing me good. So I stayed with it.

But then the next day or the day after would reveal the truth.
I would be a useless heap, in pain, in palpitations, in non-response mode for days and days.

I can take the stress no longer and I have said NO, no more.
If I have energy I want it for me.
I want a life instead of yo-yoing from bed-bound to nest on settee to frantic tidying to huge energy expenditure to being on-high to no sleep for days to pain and bodily function shut down to finally having a drip of energy for a shower at last and then collapse again.

I have admitted I am ill. Instead of thinking that I was pacing myself and that one day I would be well and I am in control of this disease and being focused and postitive about it, I have realised that I am ill and I may never get better. This is a more positive attitude than you the reader may think. It means I have let go of the person I was and I am accepting the person I am today. I was holding on to the person I was. I was hanging on to my career and the get up and go sort of personality.

So the person I am today is unable to do very much, I have no energy to shower, to eat, to clean, to tidy. However I am making a list of the things I hope to do one day. I hope to do some painting. Some sketching. Some gardening. All these things I have been hoping to do for years but if I had any energy it went on a massage client to keep my hand in my career and the hoped for carrot of returning to normal. All those vain hopes led me not to live a life while having M.E.

I think what has also helped me is changing my thoughts about this illness. At first I think I thought I was a malingerer and I think I thought that the GPs thought that. Even though I felt real pain I think that in my subconscious I was remembering something the first consultant said to me: You don’t really have pain. He was a psychiatrist. I knew he was wrong but it didn’t stop the words from raising their ugly heads in my subconscious every so often. Now I realise that I got this M.E from the time when I had shingles across the facial nerves and a very powerful drug to suppress the shingles. I still feel the shingles in my head and down my spine. I realise I have a disease and this is why I am ill.

This new focus is actually making me happy! It isn’t depressing. It is exciting!

Monday 14th November 2005
I feel better now. It is 12:30pm and I have bunged the left overs from yesterday’s supper in a saucepan with some olive oil and water and it is boiling away like mad. It sounds revolting I know but it is a quick energy (my energy) efficient way of eating a left over roast dinner. Finished lunch now and Wow that was really nice!

It has taken me ages to get up this morning. I woke suddenly and got up and felt terrible. My head felt like it was going to explode, there was pain behind my forehead. I lay down and put my hand where it hurt. The warmth of my hand seemed to dissapate the pain. After about half-an-hour to an hour it was almost gone. I lay there …
I find myself in the kitchen – no I can’t be bothered to make my breakfast of fruit and nuts. While making a decaff coffee, I drink my usual hot water. I sit on the settee with laptop in lap hoping that something will lift me out of this mire-ry heap I seem to be in. I open my bible. Micah – whoa, not very helpful, God is threatening all sorts to His people unless they change their ways. Then He says that He will gather His remnant together. What are you trying to tell me, Lord??? I go back upstairs and lie on the pile of bedclothes where underneath is a bed. I stare at the wooden slatted blinds. I stare at the iron. Why is the iron still there I query in my head? Why didn’t I put the hair-dryer away? I think … I am in a I just can’t be bothered mood. Or maybe I just am exhausted. I feel tearful, please help me Lord, please. I reach for the phone and call a friend who also does massage treatments and beauty therapy. I discuss something with her that has been on my mind eversince I got M.E. and suddenly came together in my head while lying on the heap of duvets and pillows and books and TV controllers and the telephone I call a bed.

“OK” she agrees and we arrange a meet tomorrow.

Blood having returned to my forebrain I find the enthusiasm to get showered and dressed and even clean the bathroom well the bath and sink and window sill. Amazing! But I am back on my bed as soon as I leave the bathroom too exhausted for the moment.

It is a gorgeous sunny day today and I want to try and walk through the village to the post office. I really want to do this and plan it in my head but then I saw the left-over food and thought I would eat that. Now I am here half lying on the settee in my usual hole with the laptop on my lap and I find my body is SO grateful that it is here. I can’t see it wanting to move now for a couple of hours at least.

I would classify today as another orange day but moving to yellow, difficult to know until tomorrow!

Colour codes:
Red – very bad day (about 1 day a week)
Orange to red – bad day about to get worse (most days)
Orange – bad day (about 3 days a week)
Orange to yellow – bad day about to get better (about 1 day a week)
Yellow – better day (about twice a week)
Green – excellent day – behaving like a normal person (exceedingly rare)

6th November 2005
I been diagnosed with CFS for 2 years now. I did start a diary at first but that was of symptoms to try and trace what was wrong with me – the diagnosis of CFS was not enough for me.

Then a few weeks ago it occured to me that it might be helpful to publish a ‘live’ diary of feelings.

So today I woke up at 5am and as per normal broke out into a sweat with the effort of waking up. I went to the loo, a knee-jerk reaction with me incase it is a full bladder waking me. I go back to bed and lie there trying to sleep as I listen to my husband’s loud and non-rhythmic snoring. Nope I finally admit to myself, sleep just isn’t going to happen so I reach for my book. My body wants to sleep desperately, my mind won’t let me, so I think that reading may tire my brain and eventually I will sleep. 2 hours later, I have finished my book. I did try to sleep inbetween the read and one minute my eyes closed gratefully and the next I am wide awake. So I lay there wide awake and then miraculously my eyes close …

08:30, I wake up. I slept! I get up and get showered and dressed. Then I sit down exhausted. Then I remember that I felt very ill during the night. This was why I couldn’t sleep. My stomach was hurting, my throat was tight, my ears felt funny.

So for breakfast I have a dose of citricidal, pain-killers and chopped up fruit. (pear, mandarin, kiwi and a few raspberries). I have already plastered my neck and throat with tea-tree. I feel bit better. I refuse to take my Omega Oils because I am so fed up of swallowing 6 capsules, when my throat is tight like this it hurts to swallow those hard round things, they get stuck.

The painkillers are great because I coped with going to ‘church’, we meet in a friend’s house. I am home, Hubby and I have had lunch. I feel exhausted, my heart is pounding, I feel so weak and so sleepy, tearful, fed-up and this is difficult to type because my fingers have become dyslexic.

But I can’t settle to rest. What is the matter with me?

‘You’ve got M.E.’, says my husband.
‘Yes, I know.’
‘No, you don’t, you fight it all the time.’
‘What should I be doing then?’
‘Pacing yourself more. Look what you did yesterday, all that walking and without your stick and you ate a flapjack and you know you can’t eat oats.’
‘I was hungry and it looked so nice, I nearly had a piece of cake! (as if my denial of that was compensation for eating the flapjack) I can’t use a stick and carry shopping.’ I added: ‘Mick, there was a time when I was doing 3 jobs, studying and looking after 4 children on my own. I can’t stand the fact that I can’t do these things anymore.’
‘I know’ he says, looking sad for me, ‘it must be so tough.’

This is no good, I can barely sit here to type this – there is only one thing that helps me rest, I have been putting it off, now I must do it … and that is find an episode of Diagnosis Murder on Sky, that will switch my brain off.
To give today a colour code: Today is orange, steadily moving to red.

5 thoughts on “Living with CFS/ME …

  1. what a gift from God you truly are! I can relate to every word, from your Catholic background to your exhaustion and pain. Praise the Lord, for your words are a gift.

    I had just finished speaking to my sister about my frustration with God for putting me in a job that I love, working for a charasmatic anglican church………a dream come true for an excomunicated catholic come born again anglican! Desparately wanting to know what was going on and what I can do to enable ME to work when I have M.E. I got on line and your website came up. AND, I have an energy I thought I wouldn’t have for a few days, to write to you. Thank you for allowing the Lord to use you and your condition to help others. I will pray for you and your family and would love to hear from you some time. God bless, Jo x

  2. Dear Jo, how kind of you to say so, so are you! Your email arrived at a low ebb in my day, so I felt very comforted and warmed by God. My sister just asked me yesterday if I had an M.E. diary which reminded me that I must update it!

    I pray that you will be blessed during your time of M.E. and that you will see a clear light from God shining on the path you are to tread. And that He continually gives you a heart to seek His truth.

    (I pray that prayer for me too, because I am taking a slightly different direction which I am going to write an article about – I’ll send you the link if you are interested.)
    God bless and thank you for your lovely bubbly response! Marianne x

  3. Praise the Lord, I’m having an orange day!
    There’s stuff I will respond to…..can’t at mo….struggle with the up and down the screen thing!! God bless you too x

  4. Just want to say thanks for putting into words how I feel most of the time. I am struggling with understanding me at the moment, where is the old me?
    Thanks Angela

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