A Mixed Bag


This last week has been a mixed bag. It has been a reminder about what this illness really is. For almost a month I had no collapse (the point where my fatigue level meant I wasn’t capable of continuing any form of activity). I had a couple of close calls but no actual collapse.

Three weeks without a collapse meant weeks without losing days to ill health as a consequence of doing too much. For almost a month, I wasn’t forced to spend days either lying on the sofa or in bed. Easter Sunday however I did too much. I walked approximately 150 metres more than I should have done. As a consequence, Monday to Thursday were lost in a blur of brain fog, pain and days on the sofa or in bed.

I managed on Thursday to get out of the house to go to physio but the simple act of speaking to him thoroughly exhausted me. Normally I could quite eloquently discuss my symptoms and progress with him, that Thursday I struggled to find even the most basic of words. On return I was back to my bed and the sofa.

There was no blog all week because I just felt too fatigued to give it a go. My brain didn’t have the energy to simply get through the week never mind write.

Friday, however, I woke up feeling better. Pain levels were dramatically reduced and my level of fatigue had improved. Friday morning I had an appointment with a consultant from a local pain clinic. I had to wait for twenty minutes in a busy waiting room with lots of movement, sounds and colours. I instantly started to struggle. Luckily the nurse called me early and I escaped the mela.

My friend, who has visited many a pain clinic, had told me that she had never come across anybody who wasn’t just lovely. Despite this I was nervous that I would yet again come across a consultant more concerned with establishing my stress levels and whether I was depressed than actually assessing my biological illness.

My friend was right, the nurse told me next time to contact them and they would arrange a room where I could wait without so much sensory bombardment. The consultant was wonderful. He was knowledgeable but prepared to admit when he didn’t know something about M.E. Unlike my previous consultant who was not knowledgable and more than willing to pretend he was. The consultant filled me with confidence that I can make progress and that I can get my life back (altered as that may be). He stated clearly that I was definitely not depressed and I had the right attitude to it all. He made suitable referrals that didn’t come across as simply letting his sloping shoulders move me on to somebody else.

He prescribed me Melatonin which seems four days into taking them to be revolutionary. Melatonin is produced in the brain and assists with enabling refreshing sleep. The less refreshing sleep you have the lower amount of Melatonin you produce thereby the less refreshing sleep you have. The less refreshing sleep you have, the harder it is for your body to heal itself. It is a viscous circle that is almost impossible to escape without some form of intervention. For the last four days I seem to be filled with energy and a clarity of thought. It could all be coincidental or it could all just be a placebo effect. I don’t know.

Despite feeling so full of energy and feeling able to do anything I wish, now is the time where I must be careful. It is so easy to do more than you should. Where in my last three week period of remission, I got to the point of near collapse on several occasions, this time I must do all I can to not get to that point. On Saturday I went out for dinner with friends therefore I rested all day and only stayed for an hour and a half. I left feeling full of energy and not in pain. This was the right time to go. It would have been so easy to convince myself that I could have coped with staying for dessert. While I may well have coped, it would have been another withdrawal from my bank of energy. Managing my withdrawals has to be the centre of all that I do now.

My physio, six weeks ago, gave me exercises to do that would help strengthen my back and neck so as to reduce pain in these areas. I followed his instructions yet it seemed that 24 hours after doing them, I always had a bad day. After a week of trying them, I gave them up. My body was telling me it was a bad call. The pain consultant also recommended I stretch every second day. Early days but I have yet to have an adverse reaction to this. Perhaps in the last six weeks my body has healed to the extent that it can cope with limited exercise.

Whenever you have a good day, you start planning for the future. My brain can’t stop itself from being hopeful, from thinking about what I will do when I get better. My collapse was devastatingly sad for that very reason. I felt that I was making progress, that I would never have a collapse again but I did. With that collapse my dreams once again came crashing down. I don’t think however that this means I shouldn’t dream.

Dreams give you something to look forward to, they give you the hope that you need to keep on fighting despite the pain and fatigue. These dreams do however need to be put in a neatly labelled box that says – Not for you, just yet.



4 thoughts on “A Mixed Bag”

  1. Thank you again. I also struggle with the balance and how to manage the hope/dreams and disappointments. Love the final line… “Not for me, just yet… ”

    What a way to keep realistic and hopeful. Wishing you well.


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