You Don’t Have To Be Strong All Of The Time

The past month has been very difficult for me, though it takes a lot to admit to that.

Most of the time I achieve far more than people would expect from someone with my medical needs. I’ve been through so much with my Ehlers-Danlos Syndrome, Postural orthostatic tachycardia syndrome and gastroparesis and most of the time I cope well. I get complemented frequently, in fact, for being so positive.

Behind the scenes, however, it’s a different story and sometimes I don’t cope at all. Some days seem impossible and I will have at least one day a week where I cry, shout at the various pumps I’m attached to or just feel utterly fed-up.

I’m currently dealing with quite a big deterioration in my condition. A syringe driver has been added to my collection of medical machines and a new tube drains my stomach contents into a bag. Instead of swallowing all my meds in one go, it now takes two hours in the morning to syringe liquid medications into my feeding tube and the whole process is repeated again in the afternoon and evening. I’ve learnt how to place needles into my tummy and chest to attach my syringe driver, which delivers medication continuously over 24 hours, and I spend three hours travelling to hospital twice a week for IV infusions. I am exhausted and my body is black and blue from injections and cannulas.

I’ve always prided myself in the past on my ability to cope (although it’s probably more stubbornness than strength). When things get tough, I have a little moan then move on and learn to adapt to my latest version of ‘normal’. But this month has beaten me and I am struggling. My life is on hold while I focus on managing my new complicated medical routines and my wife is run off her feet caring for me as I lose more independence. I want nothing more than to put all my energy into my job or just have a lazy day on the sofa in my PJ’s, but even a lazy day can’t begin until all my medical needs have been seen to. I’m lucky if I can stop and just sit and rest before 3pm.

It’s OK to acknowledge these feelings. It’s OK to cry.

Despite learning all kinds of new medical procedures recently, the lesson that has made the most impact on me is that I don’t have to be strong and cope all of the time.

I’m making sure I don’t make things even harder for myself by feeling guilty or ashamed when it gets too much. At the moment, there are tears most days and sometimes I do just give up after the third attempt at getting my needle in but I have learnt that it’s OK to cry, have a tantrum and just feel utterly defeated. My body is working the hardest it’s ever worked and is doing the best it can but when it doesn’t have the energy or ability to cope with another painful procedure, that’s OK.

I’m allowed to get angry or feel sorry for myself. I can tell people I’m not doing well when they ask how I am. It’s fine to moan and admit that I just want a break. And sometimes, by allowing myself to cry and tell the world that I’m not as strong as they think, I’m actually being the strongest I’ve ever been, allowing others to see me at my most vulnerable and – perhaps – to understand better the most difficult part of living with a chronic illness.