M.E. diary

Party girl to party pooper – Part 1


In the days before I found out it was adrenaline that kept me going I really was the epitome of the party girl and could keep playing longer and harder than most of my friends, who were averagely 10 years younger than me – we had some fun!! Of course I hardly slept because the adrenaline would take days to leave my body so I’d always be up for it the next day when everyone else was flagging – luckily age was on their side so the weekends were full.

I was the one who organised most of the nights out – the social secretary – finding out who was free and sorting out meeting times and places.  I loved a spontaneous party round at my house with the girls then into town for the usual drink and onto a club/clubs to dance. Meeting up for breakfast on the beach the next day was a glorious end to the night before where all the pieces got put back together again. I did this Friday, Saturday and Sunday in my old life – work hard, live hard, party hard. There were warning signs even then. I remember times during this when if I got cold I would feel so ill I had to go home because I thought I had flu coming (still it never came to anything ha ha).  Being able to stay wide awake until 6 or 7 am became a little wearing (probably for my husband to be) but even for myself – the one time it really had any benefit was the night/morning I was sitting on a bench by the harbour chatting away with my lovely friend Heidi when a yacht, with some friends on it, moored up in front of us to wait a couple of hours for the 8am bridge – we hopped on had another drink and I sailed it under the bridge when it went up – another tick for the bucket list.

These days my lifestyle has changed, depending on whether I’m in remission or relapse, sometimes drastically, sometimes noticeably and sometimes not at all. Of course a lot of this is age and finance related and not all down to ME but I started this post because I wanted to make a physical note of how I manage my day differently to the old days and what I do to conserve energy to stop the adrenal spikes and exhaustion from kicking in and to stay working towards remission which I feel pretty close to (Sept 2012). The goal being to just get on with the day, take everything in my stride and have enough energy to party again just as hard for one night only when finances allow. I mean ….. isn’t that what most of us work for – being able to have a blow out at the end of the week doing whatever winds us down. For me at the moment my full time job is managing my energy levels and getting myself out of relapse and firmly into remission and I’m very lucky to have a way of life that means that can happen.

Energy management can have the effect of making ‘one’ seem like a complete control freak. I, and other people I have talked to with ME or long term illness, don’t handle changes, or surprises, at short notice very well. The brain uses a LOT of energy and surprises (which can create an adrenaline spike which creates the fight or flight feeling which causes mini panic attack/anxiety which causes stress which causes brain-fog take a lot of time to work out – do I have enough energy, do I have time to save some energy, I need to plan how to handle whatever it is as normally as possible so that my ME has as little impact on my family or friends as possible. As long as I know all the details and don’t have to think/worry I’m fine because my brain doesn’t have to go into overdrive (exhaust itself and me) working things out. If I have a couple of days notice and all the details are there my brain works gently and quietly away in the background – no problem.

It’s really frustrating (and sometimes quite upsetting) for me that under duress I can’t get things right/straight in my head when a few years ago I could cook 5 courses for 12 people (whilst simultaneously handling work problems, welcoming and entertaining guests, sorting out squabbling children and drinking) and have everything timed to perfection and a house full of happy people.  A recent example of just working out how to get chilli cooked, rice fluffy and garlic bread crisp and all on the table hot and at the same time as a microwave meal for someone who couldn’t eat chilli seemed like WW III to me and I actually needed to sit down and ask someone to talk it through with me so that I could work it out – how crazy is that?? All because it was short notice and I didn’t know what time people were coming and who wanted to eat/leave when – the challenge would have added pleasure to the proceedings a few years ago. It’s simple though because once I’d realised this and let my family and friends know that I just need details and a few days notice everything can be (appear) normal!

Since moving towards remission ALL the problems I have around the house and the adaptations I have had to make are for tasks where energy is being used in the biggest muscles in my body – triceps/biceps/quadriceps – basically the tops of my legs and tops of arms. Actions where they are used gently but no exertion is necessary aren’t anywhere near so damaging – the best example I can think of is riding a bike – I’m ok to gently cycle along a flat road for miles (of course there are times I couldn’t contemplate this and even when I’m ‘well’ this tires me out more than normal eventually but it’s not instant like riding up hill is and energy is being eeked out gently rather than used up all at once) but as soon as pressure is needed to go up hill it exhausts me almost instantly.  Walking up hill is not too good either but feels like it takes a tenth of the energy cycling does so whoever I’m out with will walk my bike up with theirs. Being in remission will hopefully mean I can walk my own bike up the hill for a while and I’m really hoping that one day I’ll be able to ride it up again but at the moment that thought is a bit scary because I know that doing something daft like that can knock me over again and put me right back.

Over the years I have formulated energy saving ‘tricks’ (for want of a better word) that helped me to get things done that can’t be left when you are a single parent with two young children. As a single parent it’s all down to you there’s no one to pick up the slack when you can’t do what’s necessary. I could never iron for some reason that always exhausted me and that would be left for months until a rainy Sunday came along when there was nothing else to do and id spend the afternoon doing it while watching old movies on TV. Eventually I just managed to find a ways of ironing less and less things and its now 4 or 5 years since I ironed anything – and I don’t just wear creased clothes!!

In Part 2 of this blog piece I’ve detailed what household chores exhaust me and how I’ve tried to get round the problem – if you have ME or another long term illness it would be great to hear from you about what you do or how you manage – you may not even realise that you have ‘tricks’ because you’ve been doing them so long – I didn’t realise I never ironed until I had friends who stayed for quite a bit longer than a weekend  and who, quite normally, ironed everything.

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