I’m an extrovert. I love being around people, socialising and being part of a group, be it at work or otherwise. I also enjoy my own company which I learned to love whilst on my year abroad as part of my university degree. It was either wallow in low moments of feeling homesick or get out and about and learn to be by myself until I made friends. This has definitely been a godsend recently when I have had to spend a lot of time alone, in my own company, whilst I was too ill to work and leave the house.
Now I am managing my days better, I am able to see friends or family for short bursts. However I struggle with this. Even on a good day and when I am low on my fatigue and pain scale, I can only really manage an hour or so before I start to flag. I start to listen more and talk less then I don’t talk at all and just nod or smile to assimilate a response to show I am still listening. I’ll begin to look at the floor more or focus somewhere else other than the person who is talking.
If there is a small group I might start to ‘zone out’ when my fatigue level begins to become unbearable and prevent the most basic acknowledgment. I don’t often realise I am doing this until someone who recognises this moment asks me if I want to go home or take a moment away, somewhere quiet. If I am out in a coffee shop I push through and delve into my reserves to find an ounce more of energy to last me a little longer. Then, once we are in the car I relax and allow the fatigue and pain to roll in.
At work during break or lunch time I’ll sometimes sit and listen rather than participate. I try to squash the thought that I’m being rude because I know I am consciously preserving energy, or as much as I can when there is noise and movement around me.
What does this unbearable fatigue feel like for me?
When the fatigue really starts to hit I start to feel as though my head is being squeezed, the liquid in my eyes is burning off, my muscles are crying out and my eardrums are being pulled out. I can no longer focus on detail properly, lights become brighter and sometimes are intolerable.
Socialising can be very chilled though can’t it?!
There are many different ways to socialise and meet people and yes, it can be chilled. However even just having a friend or my sister round for a tea fatigues me enough to need to rest afterwards. Even a telephone call fatigues me. I didn’t realise how much it helped not doing much in the evenings apart from cook, eat, catch up on our days and then watch some TV until my parents started to come round once a week for food as they do not currently have a kitchen. The additional bodies, noise, conversations and movement after having been at work for a few hours really fatigued me. It was a shock to the system.
Socialising is a very physically and mentally demanding activity. You position your body to show you are listening, often upright and in a position that is not relaxed. You move your head and eyes slightly but as this is often a natural reaction it can be subconscious. In the background your senses are on constant alert, sending signals to your brain which signals to your nerves how and when to react. Noise, light, movement. Your body reacts to all of these simultaneously and constantly. It isn’t until you have an illness like CFS/ME, an all body illness affecting the nervous system, that you realise just how much happens around you and within you during a social situation.
I still remember the time when I first went out to town after having been house bound for months. The noise, movement, light and crowds hit me like the initial impact of an explosion. I felt so overwhelmed that I couldn’t stay long. Similarly when a friend came round for a tea and I felt the fatigue and pain hit me in a big crashing wave. I didn’t understand why it was happening, just that I needed to rest.
I was shocked when the realisation dawned that I needed to carefully consider when, how and where I socialised. Weekend plans I had made for friends to stay had to change to a lunch and other people drive when we go anywhere so I can make the most of the actual activity and also be safe on the road. Those are just a few examples.
I am lucky that I have people round me who want to understand, are trying to and are making it easier for me by accommodating my needs; nominating themselves to drive without preamble for example. Likewise my colleagues who are doing their best to support me and those who simply know that I am working part-time but are not making me feel awkward in any way for not being in work as much. I know that they will understand if I make alternative suggestions or if I have to simply say no. So thank you to those of you who are making it easier for me. I am truly grateful.