Tag Archives: pain

The Danger Zone

First off, I must apologise for not writing yesterday. Yesterday was a bad day; in the morning I lay in bed unable to get up wondering whether this was it, was this the moment I became bed bound. It wasn’t though, I rose after a few hours. I was, however, unable to write.

Was this the danger zone? The moment where I feared being unable to get out of bed? I don’t think so. The danger zone is far more benign looking than that. It is so sweet and innocent and relief bringing that it is so very, very easy to forget that it is the danger zone.

The real danger zone, the one where you need MI5 and MI6 to watch out carefully for all signs of potential attack, is a good day. All over the M.E. world I suspect carers and patients are firmly nodding their heads in recognition of this. Those who have never spent time with someone with M.E. may on the other hand crinkle up their forehead in confusion. Why would a day where you feel good be dangerous? Why would it not be a day you luxuriate in? Well yes, we do luxuriate in them but they also scare us.

Post exertional malaise or post exertion relapse (or indeed any of it’s other names) is the spectre that haunts us on good days. Somebody recently described themselves as an energiser bunny on a good day. All they want to do is buzz around the place doing everything they can’t do on a bad day. Cleaning the house and having a shower seem to be close to the top of the list! (Who would have thought that M.E. makes you dream about cleaning the house!). Meeting friends for a drink and staying up late are also high on the list.

Post exertional malaise (PEM) is something everyone has partly experienced. We’ve all been on a wonderful long walk and woken up the next day unable to move. Your muscles have built up too much lactic acid (I believe!) which causes you pain.

The problem if you have M.E is that you build up at least three times more lactic acid than the average person. Plus your anaerobic and aerobic thresholds are significantly lower than a healthy person. As a consequence, it can take very little exertion for a patient to suffer from PEM. For some, it can be as little as sitting in a chair by their bed for 5 minutes. For me, it is any form of mental activity or as simple as sitting doing a jigsaw puzzle for too long.

The PEM twist is of course that it doesn’t just lead to aching muscles but also brain fog (the days where we seem crazy or stupid!), intense fatigue, heart palpitations and for some emotional fragility (I suspect due to just feeling pants!). So the price you pay for stepping into the danger zone can be very high. For some PEM can last for a few days, for some weeks.

On a bad day, it is easy to not do too much – we feel so pants that we can’t really over do it. On a good day it is so easy! Every morning I must plan my day to ensure I don’t do too much. I can’t just hop out of bed and see what happens.

My life is based around activity points (imagine a Weight Watchers system). I’m no expert at pacing and I have had no specialist advise on what to do. This is a cobbled together plan by reading lots and getting advice from my mum and husband. It constantly is adapted as I try and create a pacing system that works for me.

I’m allowed 12 points a day. So on a good day what can I do: shower – 2 pts, 3 x 5 min walks – 4.5 pts, make lunch – 1 pt, write my blog – 2 pts, stretches – 2 pts. Total – 11.5 pts – I try and leave a little behind for unexpected activities (e.g. a telephone call). Look again at my day – how much do I achieve? Do you see any socialising? Do you see any hobbies other than my blog? If I want to do these things, something must go.

I want to meet friends for a drink in the evening for 40 mins in a pub 5 mins walk from my house. How do I do it? Don’t walk during day – saves 4.5 pts, don’t shower (fun when you are going out with friends) – saves 2 pts, don’t do stretches – saves 2 pts. I must eat lunch though and I enjoy writing my blog so that means I keep 3 pts.

So I have spent 3 pts out of my allocated 12, leaving 9 points. Walking to and from the pub will take 3 pts, leaving 6. A pub is a noisy place: lots of talking and music. A pub is also a busy place: lots of colours and people and different activities going on. Plus of course all the socialising with my friends. So my 6 points isn’t enough for 40 minutes. This is an 8 point activity. So I have to go into activity debt. Tomorrow I will have only 10 activity points to withdraw from. As it is, using those 2 extra points may be enough to result in PEM.

So on a good day we try and work out how to enjoy ourselves, get on with life but not do too much so that we end up in the danger zone and consequently experience PEM. We can never fully relax and forget about our M.E. no matter how good we feel.

So when you see us out and about – it is a good day but in our brain we are trying to balance whether it is worth it to spend that extra 2 mins to walk to our favourite shop or whether the enjoyment that brings will not be worth entering the danger zone for.

Despite all of this, a good day brings me a real sense of relief and plants a seed of hope that this is the beginning of recovery. So while recognising it is the danger zone, I can still enjoy it.



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What makes us strong?

I was going to try and improve this, this morning, I don’t like how it reads but I’m not going to. Firstly because it was written when I didn’t feel great, by not changing it, you are seeing me on a bad day. Secondly, I feel worse this morning so I can’t!

Tonight, I’m tired and stiff and sore, I’ve had a sore throat and headache all afternoon and my brain is in a fog. I spent all afternoon lying on the sofa, fighting the urge to go to bed. I tried to read but can’t. I suspect this blog will be finished in the morning, I can already feel my fingers beginning to become painful and my headache worsening.

It is on days like today that it is so hard to remain positive and see happiness in what you’ve got. However, let me review the good things about my day:

1. My mother and father-in-law are looking after me (and my two cats) as my husband is going abroad on business tomorrow: I don’t have to look after myself alone.
2. My good friends Charlotte and Phil took me to the sea, bought me a cup of tea and let me spend time with their lovely son, George.
4. George asked to hold my hand while we walked back to the car.
3. My in-laws were out all day but my father-in-law left me a yummy stew for dinner.
4. My cats came and spent time with me throughout my day on the sofa.
5. My friend, Shelly, asked me if she could come and see me tomorrow despite it being a 90min drive and there was no guarantee I’d be able to see her for long.
6. My mother-in-law brought me tea in bed this morning and this evening.
7. My husband took my much under used but much loved Mx-5 for a drive so that the battery didn’t die.

That is just one day and not a particularly remarkable day. Perhaps some might think each of those little events mean little but put them altogether and they provide the strength you need to deal with the bad days.

I’ve been lucky, I’ve been surrounded by nothing but love and care since all of this began. My mum spent ten days with me the last time my husband went away, my dad researches treatments and regularly emails them to me, my cousins have sent me numerous caring messages, friends from all over the world have expressed their support and strangers I’ve never met have given me their time and energy (much limited) to share their M.E. experiences with me so I don’t feel alone.

A chronic illness doesn’t effect just one person, it effects all those around you. Each person has to do one thing or many things differently to cater for the needs of the chronically ill person.

For me, I don’t think I will ever know how my family / friends feel about my illness in reality, they are always supportive and always willing to help out. Yet it has disrupted their lives, there must be times when they get sick of it, when they would rather not finish cooking dinner for me because I got too tired or drive hours to collect me to bring me somewhere because I can no longer drive. This is a weight that they bear and it must be hard but their support helps to fill me with strength and helps me through the tough times.

For all chronically ill patients, I guess there is one primary carer. For me it is my husband. Over the last six and half years that we’ve been together, we’ve have gone through so much. I always thought we were strong, we must have been to get through them but now ill health has shown just how strong we are. His constant love and support (though I do have to remind him to vacuum!) enables me to do what I need to do to keep going, he enables me to remain positive. He makes me feel that no matter what happens to me, there will always be an ‘us’ fighting it together.

It is so easy to forget about the chronically ill – we are boring company at times, we can’t always guarantee we will follow through on our promises but remember you are part of their foundation of strength, you are essential to a chronically ill patient. Remember too though, we might be ill but we can, in our own way, be there for you too – we can be part of your foundation of strength.