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

4 Jul
Friends. Photo source: Morgue Files user greyerbaby

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.

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?

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13 Responses to “ME / CFS: be assertive for the sake of your health”

  1. RunGirl82 July 4, 2013 at 8:10 am #

    Social occasions can be the best and the worst all rolled into one! My best tactic is to plan one thing a day. So if I have a social occasion, I commit to that, and that’s it for that day. If I feel able to handle something else, then great – but my focus for the day is that one item. And you surely do have to be strong and draw a line somewhere. It’s easiest if you make that clear with the person or group beforehand – while you’re actually making the plan. It’s not always easy to stick to (sometimes despite feeling like rubbish, you’re actually enjoying yourself), but it kets easier to persevere with 🙂 All the best xx

    • myjourneythrume July 5, 2013 at 4:27 pm #

      I definitely need to grow stronger and firmer with drawing the line. I think you’re right about making it clear beforehand. I must remember that next time. I’m still paying the price for overdoing it last Sunday. 5 days on I’m still on the sofa with my legs up battling the myalgia pain and still so damn exhausted. Who knew one lunch out and a couple of hours chatting could cause so many problems. I think there are some other gremlins at work, watch out for a post next week exploring that! Thank you so SO much for your email and I’m sooooo sorry I haven’t replied, writing coherent emails has been too much for me this week. But please know I will reply and I really appreciate you taking the time and energy to send me it 🙂 xx

  2. cakeykatescakes July 5, 2013 at 9:20 pm #

    You sound amazing! I can empathize slightly in that my IBS effects me most days, but your daily struggles put my mild complaints into sharp reality. I hope I can help inspire you with some quick and easy dairy free recipes! Thanks for stopping by my blog and I’m looking forward to reading more on yours. xxx

    • myjourneythrume July 5, 2013 at 9:25 pm #

      Awh thank you so much for such a lovely lovely comment! IBS is a horrible horrible beast I fully sympathize with you. I’m looking forward to following and making (or getting my mum or sister to make when I’m not up to it!) your treats, I was getting hungry just reading your blog! Xxx

  3. joyhselak July 7, 2013 at 2:27 am #

    You are on the right track here, brave and honest. Good for you!
    JOY

  4. juliasarahelizabeth July 7, 2013 at 5:35 am #

    I am right there with you with resting and inviting friends into my bedroom. I have a 5 inch thick memory foam mattress on top of our already 13 inch thick matress which has a pillow top on each side! My joints hurt so badly that its the only place i can sit right now. I did move our guest bed, my daybed from growing up, into the living room, in the hope that i could sit there instead. But i need a memory foam pad for it as well. I have heard taking a bath with epsom salts can be relaxing. I haven’t tried it. You mentioened a revulgsion to meat. Do you know why? I am going through the same thing and no one can figure it out. It hit suddenly and i have practically become a veggie.

    • myjourneythrume July 7, 2013 at 4:45 pm #

      Thanks so much for reading and commenting. I use epsom salt baths, and sometimes also dead sea salts too. Both are very relaxing but sometimes having a bath can really wipe me out. I think meat is harder to digest which is why I don’t eat it too much. Veggie dishes tend to be lighter and I don’t feel as bloated and sluggish afterwards. Having said that, I’ve been looking into causes of bloating (my IBS symptoms are really bad at the moment) and pulses, legumes and green veggies can all exacerbate bloating so I’m thinking perhaps I should avoid pulses and legumes as protein sources and eat more fish and chicken instead. It’s a work in progress for me! thanks for reading my blog, please come back soon 🙂

  5. thehomeschoolingdoctor July 8, 2013 at 3:49 am #

    Glad you had time with a true friend, but I sure am sorry you are suffering this!

  6. Sandy July 14, 2013 at 8:51 am #

    Yes, this is so familiar! I pace myself getting ready, like you, and then often get caught up in seeing my friends then come home and zonk out and wake up several guided meditation tracks later! The only difference is I get back into flannelette pajamas 😉

    • myjourneythrume July 14, 2013 at 8:56 am #

      Yep that sounds about right to me too. I usually collapse in my clothes but sometimes I’m in my pjs too! Zonk is a great word and describes exactly how I feel a lot of the time!

Trackbacks/Pingbacks

  1. Lost luggage and lost health….body start behaving now….please? | my journey thru M.E. - July 8, 2013

    […] And to be honest I’m not entirely sure what the problem is. I acknowledge I did over do it last Sunday when I saw Liz but I don’t that is all that’s at work here. I think there are other gremlins working. […]

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