Home » Life with MS »  Peaks and troughs

 Peaks and troughs

This weekend I forgot the word for seatbelt. I could pretend that this “word-finding difficulty” is rare but it is actually a daily occurrence. And today finds me once more taking to my bed, eating Dairy Milk and trying to keep my head still due to the return of my old foe vertigo. And it’s not even a fun day in bed. I tried clearing emails but fell asleep; I tried reading but my weedy arms couldn’t hold my lovely Atkinson hardback and I fell asleep; I tried speaking to Mr C about family organisational logistics but that made me dizzy so I pretended to fall to sleep. And forgot the word for Bible.
But the thing is this is likely to be all my own fault. A few weeks ago I ran (euphemism) the half marathon. Despite a previous post on here declaring that I would never run I actually really enjoyed the day and didn’t make a show of myself. Given that I had loathed every minute of training I was surprised at how motivating it is to know that around each corner is someone cheering you on. But it was probably a daft thing to do. The loveliest of my lovely friends had tried to gently warn me that it might not be the greatest idea to push my body further than it had ever gone before (she has known me for 23 years and for most of those my fitness regime mainly involved smoking, then dancing like a loon, then more smoking.) Since the run I have worked the kind of hours you would expect a junior doctor to work (including nights and weekend), have had too many evenings out of the house, have wrestled with the the emotional exhaustion of negotiating with a headstrong pre-teen and juggled things whilst Mr C has been abroad. We topped this off with a mad dash around London last weekend to try and make full use of our Merlin passes (54,000 Nectar points well spent.) And now I’m in bed, Victorian consumptive like, fatigued by the effort of keeping on top of my CPD portfolio and other exhilarating online activities.

It’s safe to say I have not found the right balance. Although the drugs are keeping me going, these shut- downs where I am compelled to lie flat and reboot are coming around every few months. It’s annoying for me, disconcerting for the children and not fair to my colleagues. Those of us with chronic illness (ghastly phrase) are supposed to operate according to Spoon theory . We are supposed to recognise our limits and dish out our energy expenditure in spoonfuls or little parcels. The rest of the time we are supposed to rest to make sure there are enough spoonfuls left to allow us to meet our obligations. To prevent peaks and troughs we are supposed to be measured and careful.

And of all the irritations of this disease (the inarticulacy, the need to be ever close to the loo, the clumsiness necessitating frequent new phone screens) this is the one I resent most. Like a child I stamp my feet against being told that I can’t do everything I want to do. Tears of frustration are shed about not being allowed live life to its absolute fullest. I DON’T WANT to stay in bed! I want to work and sing and dance and play and talk and cook and read and laugh without having to decide which parcel of joy needs to be set aside for my “own good,” which spoonful of life has to be rationed. 

Instead of forgetting the words I need to have a coherent conversation with my husband, I wish I could instead reject the words like “careful” “sensible” and “steady.” I suspect they may need to enter my vocabulary more frequently. I’m just not ready.

(At the risk of sounding like my ten year old, I officially hate this: ) 

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4 thoughts on “ Peaks and troughs

  1. Exactly!!!! I hate having to be careful when I feel ‘relatively’ fine!! Not that I’m in the half marathon league – well done for that!

  2. I can relate to this all too well! I’ve got some issues with the spoon theory but fatigue management (of whatever sort) is something we all have to come to terms with – even those of us who aren’t junior doctors!

    I’m glad the words didn’t fall out of your head as you were writing this excellent post.

    • I was invited on a fatigue management course but I assumed it would just be telling me to do less stuff and go to bed earlier so I didn’t go…

      • ha – that’s the most frustrating thing about it!

        all this fatigue management STUFF is fairly common-sense, it’s certainly STUFF that you will have heard (and thought about) before – personally i find that i need someone to state the bleeding obvious to me at least three times before it goes in – and even then…

        FULL DISCLOSURE – i can talk a good game on social media and in rambling comments on people’s blogs (hi!) but the fact is recognising the need to take things easier and/or ask for assistance is something which i battle with every day – much to the frustration of the people around me who see me struggling. it’s quite a psychological shift to get there, and you need a lot of strength to be in a place where you ask for it as a matter of course. (he said, talking to himself!)

        ah i remember the days of dancing and smoking – pubs smell ghastly without fags, don’t they?

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