Journey living with pain

5am 11/10/14

Struggling living with sickle pain.

It is very difficult living with sickle pain daily, especially as I look physically fine and I am struggling inside with pain and fatigue.

Physical and emotional fatigue is constant struggle daily, so trying to live life as normal as everyone else is impossible.

I live with the pressure of other people’s expectations of me as I come across as physically fine.

I find it difficult to continue to explain that I struggle to do the normal day-to-day things as simple as tiding up the house, going to the shops or even cooking a meal.

Things like having a shower and getting dressed have become a huge task; I have to pace myself to do the usual things around the house.

It is very difficult to go through each day when I have things I have planned to do; I wake up and have to cancel everything because of sickle pain.

I push through each day with determination not to give up on myself as I have come to realise that by my strength I can do nothing, I realised that when I begin to focus on the things I have to do by my strength, I become very frustrated because I don’t see myself physically being able to go through each day.

I wake up each day with a prayer for God to help me go through each day, as without him I can do nothing.

It is hard to understand and accept the changes I am going through with sickle pain, coming from where I am admitted in hospital from sickle crisis, I recuperate within three days I bounce back and I am back to life as usual; to a place where I am constantly struggling to go from one day to another feeling tired without doing anything.

Dealing with explaining to people that I am not well enough to meet their expectations of me.

Explaining myself all the time and looking at me physically and the way I talk does not portray the suffering I am going through inside.

Those who know me well ask me how I am doing; and I say I am ok because it gets tiring to keep explaining that I am in a constant struggle when I look physically fine.

Some who know me better ask how I am and I say I am ok, they ask again how are you really? They don’t let me get away with the surface I am ok because they know me better and can see through my looks to see my pain.

I want to be able to do the little I can, to be able to contribute to the best of my ability without ending up in hospital.

It is difficult to find a balance, and very hard to talk about my limitations without feeling emotional.

All my life I have tried to live as normal as everyone else, as it did not feel right to be born with sickle cell.

People look at me like there is no hope for me when they are told I have sickle cell, many called me sicklier which was a sigma.

Over twenty years ago, it was easier to live like everyone else than to be treated differently; especially when I worked hard to prove that I could do whatever everyone else was doing. I did good things and bad things just to prove I am like anyone else; and should be accepted like everyone.

Now I am trying very hard to live as normal as I can, it is a constant daily battle.

By myself I can not do it, but with God I have come this far. With God all things are possible to those who trust in him.