ME / CFS: be assertive for the sake of your health

Friends. Photo source: Morgue Files user greyerbaby

I’ll return to my hindsight and what if theme in a few days.

Today I want to write about how I manage my ME/CFS on the few occasions I actually see a friend and do something social whilst it’s still fresh in my mind.

I saw one of my oldest and closest friends last weekend. Liz and I met at primary school when we were just 7 years old. Her family still live locally to my parents and so whenever she visits home for a family weekend, we meet up for lunch and have a good old catch up. Being able to see Liz has been one of the best aspects of spending all these months resting and recuperating at my parents.

Having ME/CFS means something as basic as meeting a friend for lunch requires planning and preparation. I hadn’t really left the house, other than for a short walk round the village, for 4 days prior to last Sunday so that I had conserved and banked enough energy for me to enjoy my lunch out without suffering too many nasty ME/CFS consequences.

I spent Sunday morning resting and taking it easy. I did some gentle yoga and then rested. Then showered and got half ready to go out. Then rested again before finishing off getting ready. In short I paced getting ready with several rests (15 – 20 mins each). This meant I wasn’t flagging before I even left the house. I took my dose of soluble fibre and peppermint oil before going out so that my tummy would behave itself for lunch, as I suspected (and did) end up having meat for lunch – boy was it tasty!

We went to a local pub for Sunday lunch, just a few miles from home in the next village. Liz picked me up and drove. Me driving was out of the question as although I would probably have managed driving to the pub, I’d be just too tired to drive home after chatting away for well over an hour. I’m also trying to figure out if it’s even safe for me to drive given how dizzy I am getting these days…

It was so nice to actually have a reason to put on a little make up, wear my hair down and to wear clothes other than my jogging bottoms for once!

After a very delicious roast lunch we went back to mine. I didn’t think I felt that bad when we first got back. I was pleasantly surprised so I didn’t go and have a little rest. We stood around in the kitchen chatting with my Mum for a little while until Mum told me off for standing up for so long and Liz and I went off to sit down in the lounge. I sat with my legs up on the foot stool (the position you can find me most of the time at the moment it seems). Mum was right (Mums are always right aren’t they?!), standing up hadn’t done me any favours and the myalgia and heavy tight pain in my calf muscles and ankles were back.

Chocolate Brownie Joy. Photo by Jess B.

Liz and I continued to chatter away with cups of tea and homemade brownie (gluten free and dairy free of course, recipe coming really soon) – we weren’t being really piggy honest, we’d opted not to have pudding at the pub, so the chocolate brownie rounded off our Sunday lunch really nicely.

As the afternoon went on, I began to feel less and less good. My throat hurt from talking (I’m a bit of chatter box when I get going…) and I was beginning to be really really tired. I was flagging. But I didn’t want the afternoon to end.

I should have gone and had a little rest when we first got home. I’ve done that before with friends, with Liz in fact. I’m not sure why I didn’t this time. I guess I was just so caught up in the niceness of being normal, of seeing my lovely friend, I didn’t want to go and rest and so I didn’t.

With this illness being as invisible as it is, no one really knows how I’m feeling except for myself. This is especially true on the rare occasions that I do wear make up, it’s a great disguise!

I should be more assertive with my ME/CFS. I shouldn’t be afraid of saying, I need to go and rest now. A 15-20 minute rest would have reset and paced my body through the rest of the afternoon.

I shouldn’t put on a mask or a brave face.

In my own little way I would help make this damn illness be more understood and less invisible if I did take rest breaks during social occasions.

Next time, next time I will be assertive. I will say ‘I need to go and have a little rest now’. My close friends (who are the only friends I really see now – but that’s a whole separate post on the effect of chronic illness on friendships) would understand and wouldn’t judge me. They just want what’s best for me and for me to get better. That’s perfectly clear to me sat here right now typing this post. I just mustn’t let myself forget that when with my friends. I mustn’t let myself get swept up and forget that I have a pest called ME/CFS that demands attention whether I like it or not.

If I had been assertive and taken a rest perhaps I wouldn’t have been as tired and achy as I have been for the last few days (tho then again perhaps it wouldn’t have made that much of a difference). Doing anything social is a pretty big spike in activity for me at the moment so it’s to be expected that I’ve not felt that good the last few days following seeing Liz. With the myalgia in my legs and upper body and fatigue worse, my temperature control has gone again, switching from freezing cold to hot flush in a matter of seconds and the dizziness on standing is back with a vengeance too.It felt like every every joint and muscle in my body was hurting yesterday. Even yoga was too much for my poor body. I seemed to have even less strength than normal and changing from one asana to another left me dizzy and in a heap on my mat.

Feeling so bad for a few days following seeing a friend is rubbish. There is no sugar coating it. It is frustrating, upsetting and exhausting. This ‘post-exertion malaise’ is one of the hardest ME/CFS symptoms to deal with. But lets look on the bright side, it’s not all bad, with Wimbledon and Tour de France wall to wall on TV at the moment, it’s been fairly pleasant sat with my legs up on the sofa 🙂 And feeling so bad is worth it when it follows something as nice as seeing a friend.

After Liz left on Sunday afternoon I was quickly back in my jogging bottoms, headphones on listening to a guided meditation, covered with a blanket lying on my futon, I rested. I was more drained than usual as I actually fell asleep, waking up over an hour later, several tracks further down my playlist. But that’s not particularly troublesome, I had done something beyond my usual activity levels. I was bound to be tired.

That’s just the way life is for me at the moment. Spend the vast majority of the time resting and following a very paced routine in order to enable me to go out once in a while. It may sound dull and frustrating, and I’d be lying if I said it wasn’t sometimes. But it’s what my body with ME/CFS needs right now so that’s what I do. The fact I was able to go out at all is a plus. The fact I didn’t feel completely broken when we first got home is another plus.  I live in hope that the longer I rest, pace and be kind to my body, the closer I get to greater energy and fewer ME/CFS symptoms.

How do you cope with social occasions, however big or small?