Energy Budgeting

One of the defining features of CFS/ME is something called post-exertional malaise. This is when you do an activity and then sometime later, often the next day, you feel the fatigue caused by that activity. It is extremely difficult to deal with. Not knowing if you have done too much until the next day is a difficult way to live. I’ve learnt to judge what is too much, but it is still a bit of guessing game because energy levels can vary from day to day.

I decided I have an ‘energy bank’. And in the bank there is ‘money’ (energy) and every time I do something it costs me money. Each day I get the same amount. So say I have 9 pounds in the bank one morning. It’s going to cost me 1 pound to have a shower. It’s going to cost me another pound to get dressed and another pound to have breakfast. I now have 6 pounds left. I will need 1 for lunch and 1 for dinner. So I’m left with 4 pounds. I want to take Walter for a walk, and this is really hard work for me and costs me 3 pounds. Now I have 1 pound left. I use it up in the evening playing the Sims.

The next day I have 9 pounds again. Again I need to shower, get dressed, eat breakfast and save 2 pounds for my other meals. I have 4 pounds left again. I need to do a load of washing and that costs me another pound. So I have 3 left, and after lunch I decide that I will go into town for a change. I know it will cost me all of my 3 pounds, but I don’t get out very often and I want to go. I have an uneventful and pleasant trip into town, but on the way back I notice I haven’t got much petrol left in the car, I really need to refill it even though it will cost me a pound (yes, I realise the irony). So I do that and I now know I will be overdrawn at the end of the day. When I get home I discover the washing machine has thrown a wobbly and stopped working mid cycle and little lights are flashing at me all over the place. Sorting it out and getting it working again costs me another pound. Then when I give the Walter his dinner, he gobbles it so fast he makes himself sick. I lose another pound cleaning it up. Then my husband phones to say he will be home late, and I’ll need to cook dinner. Cooking dinner costs me another pound. I go to bed 4 pounds overdrawn.

In the morning I get my 9 pounds again, but 4 of them have to pay off my overdraft, so I start the day with 5 pounds to spend. Showering, dressing, breakfast, lunch and dinner take all of those, leaving me with nothing. If I do nothing else today I will have 9 pounds again tomorrow. But if I do other things, I risk becoming more and more overdrawn.

I’m quite lucky, I usually have 9 pounds a day, spare a thought for those people who only have 1 or 2 pounds a day. I remember I used to only have 3 or 4 pounds a day and that was very hard, but luckily with time I’ve earned some interest.

There is a wonderful alternative explanation of this called ‘the spoon theory’  which I came across sometime after I came up with my ‘energy bank’. It’s a very good description of the same thing, but it is a little too simple for CFS/ME as it is based on Lupus.

The example I have given above is an extreme one. In reality my husband never phones me to say he won’t be home for ages and I’ll need to cook dinner, and I could have managed without getting the petrol. But I wanted to show what happens on those days where everything goes against you. It’s very difficult to deal with. Also, the reality isn’t quite this simple, some days I don’t have 9 pounds, I only have 7 or miraculously I’ll have 12. This will vary without rhyme or reason, but stress and illness definitely reduce the daily budget. And just to confuse things further you don’t actually know what your budget is on a given day, you have an idea, but you won’t find out until the next day whether you’ve overspent or not. Also you cannot save left over money from the previous day, if you don’t use it all, it just disappears.

Sometimes, I think: you know what? I don’t care! Today I’m going to do what I like and to hell with the consequences. And often I pay for it the next day, but it’s worth it. The best days are when you do this and wake up the next morning feeling ok, and you realise the budget for yesterday was higher than you thought and you haven’t overspent. You don’t have to spend today paying for the excess of yesterday. It’s just a shame it doesn’t happen very often.

‘Energy is the essence of life. Every day you decide how you're going to use it by knowing what you want and what it takes to reach that goal, and by maintaining focus.’ - Oprah Winfrey

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To Ski or not to Ski? That is the Question

I’ve just got back from a week in Italy, my first international holiday since developing CFS/ME. I have to say, despite my fears about travelling abroad with CFS/ME it all went very well and I coped better than I expected.

We arranged in advance that I would need assistance at the airports, this was done through the airlines website, and bar a minor blip at Milan I got all the help I needed. I had a wheelchair and someone to push it provided at both Gatwick and Milan Linate and Milan Malpensa on the return journey. Much to my surprise I didn’t need to produce any medical evidence, they just took my word for it. But I did have a letter from my GP with me just in case.

The assistance at the airports meant that I was able to function the next day, although I was still very tired. But I had been expecting to be so tired I would be in bed all day – so it was a nice surprise that I wasn’t.

We stayed at the fantastic Albergo Pineta and we were very well looked after. The food was amazing and I’ve eaten so much I’ve put on nearly 2 inches on my waist. Skiing holidays with no skiing do to lead to a lot of weight gain. So it’s reduced rations for me until it all drops off again.
 

I learnt to ski as a child and I have done one week of skiing most years since. Having said that I am a fairly indifferent skier. I have the skill but not a huge amount of desire to zoom down hills at high speed. So I was expecting to be quite happy not skiing this time round. I was very surprised when I realised I was terribly upset not to be skiing. Seeing everyone else going off on their skis and the beautiful wide, white, pistes made me realise I really wanted to be skiing. I eventually persuaded my dad and my husband that I would be ok to try my dad’s skis on the nursery slope. I was shocked at how difficult I found it, one run and I was thinking I should stop, but it seemed so ridiculous I did one more. I knew then that I really couldn’t cope with skiing properly, and I was able to accept it better, having tried it and established where the bar was. Two days later I did three runs on the nursery slope and then five runs on the last day. I am going to aim to be able to ski properly next year. So I shall be working to build up my strength and stamina gradually.

It’s strange that only when you can’t do something do you truly appreciate being able to do it. I took it for granted that I could ski and never really appreciated it. Not being able to made me appreciate it all the more. My few runs on the nursery slope were one of the highlights of my week.

Depression Part Two - Getting Out of the Box

Following on from my post last week, this is about my recovery from depression. As I mentioned last time it is a seemingly impossible thing to do, you know that you can never recover. The odds seem completely against you, and it takes enormous will power to even try.

One day I decided to start taking down the walls. Trying to believe that I could get better, but knowing that I never could. Each morning I had to make the decision anew, and some days I failed to make it and I stayed in bed and cried. But gradually there were more mornings where I made the decision to get better. I learnt all I could from my CBT sessions and put it into practice, and that helped a lot. I talked to people, I tried to keep going and live and do things. In fact I found that doing things helped. Often talking to people helped too. Which must have been a relief for everyone around me, because I was horrible to live with, I snapped at people and said hurtful things. Ultimately, it is impossible to make connections with people when you are trapped in a prison where you cannot feel love or compassion. There is also a terrible sense of guilt for not loving people you used to love, and the urge to push them away is very strong. But, I began to learn to accept help and to talk, and I learnt to think before I spoke and try to be nice and reasonable, and failing all else to say: ‘I’m really sorry, but I feel crap, I just need to be on my own.’

I was also taking antidepressants. I’m not a fan of antidepressants particularly, they will not cure depression. But they can help, they can ‘kick you off the bottom’. They certainly have their place, as part of a treatment programme that includes therapy and/or counselling. If you are taking antidepressants and they don’t seem to be working, speak to your GP as there are several types and what works for one person may not work for another.

At some point I was better, it took years, but one day I no longer had to make the decision. I had bouts of ‘getting in the box’ again. And as bizarre as this will sounds to some of you, it was because it was a safe place; nothing could hurt me in there, except myself. I still needed to learn better ways of coping and at some point I did. I forgot how to get in the box. I went through some really upsetting stuff and I cried a lot and was unhappy a lot, but I didn’t get in the box, and I couldn’t remember how to. My mind seems to have finally learnt how to deal with problems healthily.

Sadly for anyone with CFS/ME and depression, one of the tools to fight depression with is likely to make the CFS/ME worse if not managed correctly. And that tool is exercise. I have no answers for this problem, only to do a little as often as you can, in a sensible and paced way. Don’t go mad and spend three hours at the gym if you’ve previously been doing nothing. Take it slowly.

Things that helped me:

1. CBT – A list of registered therapists can be found on the BACAP website (British Association for Behavioural and Cognitive Psychotherapies) – it requires dedication and work from the patient for it to be successful, but if you can devote yourself to learning from CBT it can really help. Sadly not many areas offer it on the NHS, but check with your GP. There are however therapists that will offer discounts to people on low incomes.
2. Online CBT – For anyone who can’t get free CBT and can’t afford to pay for it, the MoodGYM may be helpful. They also have a new program called e-couch that can be found on the MoodGYM main page.
3. EPA or Eicosapentaenoic acid can be very helpful in improving the symptoms of depression. There is actually some medical evidence that it can be helpful. From what I have read most trials found that daily doses of over 1g were effective. I take Ideal Omega 3 which has 700mg in and I find it effective for stabilising my mood and improving concentration. Another option is MorEPA which has a slightly lower dose of EPA, but some argue that the purity of this is better. Both of these products are available at varying prices from many websites, so do a bit of research before buying.
4. Books – In particular, books by Dorothy Rowe, I found ‘Breaking the Bonds’ extremely helpful, but she has several other books that may be of interest.
5. If you find depression symptoms worsen in the winter you may have Seasonal Affective Disorder (SAD) – please check out my post about this, it includes several useful links.
6. Exercise – the recommended amount for helping depression is to get out of breath or increase your heart rate for thirty minutes, three times a week.

Here are the links for several of the UK mental health charities; they will provide help, information and advice if you need it:

• Mind
• Rethink
• SANE
• Mental Health Foundation

Finally, if you are reading this and you are really struggling with depression and are feeling suicidal, pick up the phone now. Phone someone and talk to them, tell them and get some help. If you can’t talk to someone you know, phone the Samaritans.

I recovered from depression and became a healthy and happy mentally balanced person. There is no way to describe how difficult it was. I have done my best here, but this merely hints at how much I struggled. But it was the most worthwhile thing I fought for. If you can start fighting you have made a big step on the way to recovery. Get help, you will need it; this is not something to be done alone. And keep fighting for as long as it takes, accept that some days you can’t fight, but know that every day you do fight counts. If I can do it, so can you.

‘In a strange way, I had fallen in love with my depression. I loved it because it was all I had. I thought depression was the part of my character that made me worthwhile. I thought so little of myself, felt that I had such scant offerings to give to the world, that the one thing that justified my existence at all was my pain.’ - Elizabeth Wurtzel, Prozac Nation (1994)