And I wonder if you know How it really feels to be left outside alone

Baby Lulu helping Mummy out with the guest list at Fabric

A friend of mine from Instagram recently posted the following quote ‘main caption above recently. She is a fellow spoonie, a fellow endurer of autoimmune disease and chronic pain and fatigue. Her post got me thinking a lot about how being so unwell really changes ones relationships in a way that can be really hard to deal with, from both sides. I spend my time either at work or at home, there are no other destinations for me these days. I am too tired, too sick, in too much pain. This is not how it used to be. I have spent half a life time working in clubs, I am a naturally sociable and curious person, I like being out and about, meeting people, talking, eating out. Having fun.

If I thought having baby might curtail these activities (it didn’t really, my ex husband and I just let Lu slot into our lifestyle, with a few less ‘out until at dawn’ scenarios) then it had nothing on that the impact developing fibromyalgia had on my life.

Pimms in Nottinghill

I understand that at times friends don’t ask me to go places because they know I won’t be able to and I imagine that they don’t want to put pressure on me or make me feel bad when I decline. I cannot cope without rest, lots of rest, so that does put a stop to evening afterwork shenanigans. This has also meant that I don’t make plans anymore, ever because I have had to cancel at the last minute more often than not as my illness varies greatly day to day, I could be fine one day and then barely able to walk the next. I hate hate hate feeling like I have let people down so now I just don’t make any plans. I spend my evenig and weekends with my mum and my daughter. I know it probably isn’t hugely healthy, that I should be with friends, to let off steam, chat, be ‘me’ but we don’t always get to do what we want. I know I am doing my best.

Lunch at the Oysterage in Orford, Suffolk

I’m not trying to do anyone a disservice, maybe the people who don’t ask me just don’t wat t see me, I can accept that! But for those who do like me, it is really important for me to still be asked to spend time with you, it makes me feel valued and wanted and all those things we are never meant to rely on other people for but we do. Each time a friend invites me to do something, knowing that I will probably say no or cancel at the last minute, it makes me feel really included which is so important when one has an illness that can be so debilitating and isolating.

So please, if you have a friend who is unwell, be it depression or any other illness, please remember, when they say no to an invitation, don’t be hurt, don’t vow to not bother again, it matters that you asked, it matters so so much.