Today, and most of the past week, has been spent with enforced rest and thoughtful contemplation.
I was hoping for a 24 or even 36 hour relapse, but today,(day 5) I can see that I’m still falling, so acceptance and patience are the key to survival.
Whenever one falls ill,(or more ill than usual), the temptation is to cry out on social networks, listing all the symptoms and the frustration of what you now have to miss or just how terrible your life feels at that time. I often think about this and I’m sure I’m not the only one thinking to myself in 140 characters or less.
For each item I post, about ten rejects remain floating around my head. I think that is a good thing, which anyone can see when looking at a large proportion of other posts floating around the internet.
When declaring sickness or trauma what we are really wanting is contact, a virtual hug, an acknowledgement of understanding and therefore a reassurance that we are not alone.
With many chronic illnesses an actual physical hug can be too painful physically or just not practical if you are at home, in or on your bed, alone.
I have been feeling very grateful that despite how drastically my life has had to change due to my illness, I do have a very loving and caring husband, with a good job,wonderful teenage sons ( only moderately stressful) a team of great Carers and many supportive friends.
A couple of days ago I resisted the urge to declare to the world that I had ‘crashed’, again.
Instead of posting doom and gloom I spent a day thinking about just how lucky I have been recently. Although I do still feel only halfway between bed bound and ‘normal’, I do realise just how far along the scale that is.
By posting somewhere that I have to spend a few days in bed, many friends have no idea what that means. Before I fell ill a day or so in bed meant curling up with good books. Being waited on with meals in bed and maybe even watching films or TV. To an increasing number of my friends bed is their whole life. To even imagine a day out of it is a far away dream at the end of a tortuous journey. To me days in bed mean silence, ear plugs, eye masks and literally doing nothing. This made me feel guilty, how can I possibly complain when I have clearly been able to enjoy life a little? There will always be things I want to do but my health won’t let me, just as healthy people are restricted by time or money.
These thoughts prompted compassion for my friends and so I posted a ‘hello’ and mentioned that I was just thinking of all my friends who were suffering like me, not just the long term ill but the ‘new to illness’ and the ‘not sure yet what’s wrong’.
The response was quite overwhelming, not just to me but to many of my friends. We were all reminded that we’re not suffering alone. No matter how bad our bad days are there is someone who knows exactly how you feel, just as your knowledge comforts someone else, maybe not as far along the road.
All the responses were positive and uplifting, for a few hours friends from around the world popped their heads out from under their covers and shared a ‘knowing’ and best of all, an all encompassing virtual group hug.
That little bit of love will keep us all going for a little longer and strengthens us all.
The Chronically ill can feel very isolated and sometimes the biggest loss is from those who have moved away from sickness and into health. They are like children leaving home but never returning. That is why I felt I had to write this post. Next week or next month I could be back to ‘my normal’ and maybe I’m far enough along my recovery that I won’t have another relapse. This time will be forgotten and fade into a distant memory safely locked away with all the other pain and suffering I’ve had during this life. I don’t want to be someone who has suffered so badly and then walks away from it and all the friends I’ve made who have been suffering with me.
I hope that we can all help each other find recovery in one way or another. That is the gift of our time, social media brings together those who would previously been isolated.