The Sun After The Storm

So what happened…

June 22nd 2016 my life plummeted to the ground (No exaggeration).

It had been 8months since my last crisis / hospital visits and since then I had survived a world wind of emotion and struggles and thought that was it. I thought nothing could take me down and had painted myself with a coat of resilience until it all got striped away.

Ironically, I had just been interviewed by BBC Radio 5 to talk about Sickle Cell (SC) and was slightly proud inside because even though I was talking about the pain I hadn’t felt it, until 2 days later when it all hit me again.

I was lying in bed and my chest started to feel tight and my legs were aching. I knew it was SC and resisted going into hospital there and then because I wanted to prove my strength to the world. You see I had a busy morning the next day and didn’t want to let people down, so I wished so hard that the pain would subside and that I was in control.

The following day I got dressed, in pain, and went about my day; teaching in the morning and then went to a meeting all the while trying to contain the throbbing sensation in my leg, until I gave in and went home around lunch. I was on my stairs and got stuck, I couldn’t move an inch without my body hurting and so my mum called 999. The paramedics came and had to drug me up on the stairs before they could move me.

To cut a long story short, from that day I ended up in hospital for a whole month. During those 30 days I left the hospital twice, in eagerness to get home only to find myself back in there after a couple of hours.

I hated it. It felt like prison (not that I know what prison is like), but worse because I was really sick at the same time.

So the diagnosis was: I had a crisis in my legs, contracted a urine infection and E.Coli which then developed into a kidney infection and a crisis in my hips, so moving from the bed to the toilet was horrendous. One weekend I had been screaming in agony and the doctors kept injecting opiates into me which had nearly poisoned me, reducing my breathing. I was having fevers every day and then a crisis in the bones in my head, (which is uncommon for adults with SC and scary too incase it triggered a stroke).

Twice, I really felt like I was going to die. Apart of me wanted to too. I wanted to give up, I didn’t want to go through it any more or ever again. I couldn’t take it any more and I remember saying bye to my mum. I can vaguely remember the doctors trying to keep me conscious and being under pressure while they kept dosing me up. The pain ran deep across my body and mind.

The only thing that kept me going a little was seeing people show up at the hospital everyday. People that I never expected to be there that gave me a little light. Even though most of the time I couldn’t hold a conversation because I’d knock out, that love made me hold on.

But there were really dark times too: “why me”, “it’s not fair”, “I don’t want to be tested”. I was angry at everything for having this illness and I would often look out of my window and think people didn’t know how lucky they were to be able to even wake up in the morning without a care in the world, without any pain and to be able to do what they wanted to do without thinking about consequences. I thought I was being punished for some reason.

I held on to being grateful for having people around me, for the messages I was receiving and for having my mum come every morning with food and sitting by my bed for 12 hours everyday. Just sitting there and riding it out by my side so I didn’t feel so alone.

My doctor and SC nurse made me fight through it everyday.

During those 30 days nothing in the world mattered to me, nothing at all, apart from God’s mercy and him relieving me of the pain. That was the only thing I wanted.

I was on around 30 tablets a day and was on a machine called a pca where I could give myself doses of a drug called fentanyl every 5 minutes, which I later found out to be a drug stronger then heroine. I realised that in hospitals they just throw drugs at you, like literally shovel them down you and it was making me feel worse and lifeless…

 

I’ve been home for a week now and have been learning to rest and chill. I also learnt valuable lessons:

  1. Relationships. I saw who really cared for me and who cared for their need of me. I realised that some people were only contacting me when they could get something from me.  But when you have nothing to offer you see who still wants to be in your life, and I am unbelievably thankful for the people I have in mine, (including everyone that was praying and wishing me well) it made me realise that I’m not alone, which is something I had felt before I went in. Truthfully, I had felt like I was so alone in the world that I had to do everything, and was working 3 jobs just to try and create a sense of place, value and stability in the world which I’ve now realised was wrong.
  2.  Never compare. No one is going through the same struggle. I used to feel like I was underachieving compared to my peers and that I wasn’t where I ‘should’ be at my age, but no-one has been through what I have, nor have I been through what they have. And so instead of looking at people thinking “oh I wish I could do that…” I now think “I am so grateful to have people that love me, to have the memories that I have and have the capacity to make many more”.
  3. You can’t control everything. I found it so annoying that there are people who abuse their bodies and their health and have no repercussions. And then there are people who have no control of the diseases and illness they have that limits their quality of life. However, what you can control make sure its filled with happiness for example, make choices that are going to make you happy, and keep you healthy to enjoy life and it’s beauties.
  4. No expectation of people. Everyone’s different and you just have to let go of any expectation you have and focus on who you are. I came to a point where I was like I know I’m a good person, I have the right intention and will act with compassion regardless and will leave the rest to God.
  5. Don’t stress. Money isn’t important, people are.
  6. Love yourself, make sure you’re around people that make you feel good, that make you laugh and uplift you. Eat food that is going to make you shine inside. Listen to music that makes you jump for life and give yourself a break when you need it and it’s ok to say no to something if it isn’t right for you.
  7. As hard as it gets, there are people who are rooting for you.

 

I felt like a month was just robbed from me, and time became irrelevant. I had goals and aspirations (which I still do have) but time has been put into perspective, and with hard work and the right attitude things will happen when they are supposed to.

I’m starting again by putting my headlights on, so just seeing the next step getting there and then seeing the next… instead of stressing about the end goal. Focussing more on the journey instead of the destination, because you never know where the road may detour.

I’ve been through what I’ve been through to grow; it was like a sign to say stop and start again, and that’s ok because I’m a better person from it. From bad situations, relationships strengthen and ego goes out of the window. I think the best thing has been able to realise that whether you have 1 person by your side or 100 it’s all worth it. You’re health is honestly, 100% you wealth.

I didn’t and don’t want people to look at me and pity me, but I do want people to look at themselves and be grateful for what they have because it can all be taken away when you least expect it.

Lastly, from the bottom of my heart thank you to all the people who supported me, kept me in their prayers, reached out or came to visit, it meant more then you can ever imagine.

SS xx