Y O L O

In the past 9 months I’ve done a whole lot of travelling; 6 different countries to be exact. That’s probably no big deal for any other individual, but it may sound slightly extreme for someone who is living with sickle cell. It has taken me years to be able to travel this much without risk and without fear; but believe me I have taken many L’s in the process.

Everyone wants to go on that ‘girls trip’ or ‘guys trip’ and I was no different, but I had to make the decision to miss out on many of these since sickle cell was not my best friend throughout my teenage years and early twenties. I missed countless girl’s trips and family holidays and lost out on everlasting memories as well as a lot of money. It sounds unbelievable when I think about it now. But I can say that I have always, sometimes reluctantly, put my health first when it comes to making travel plans.

The reason I am sharing this is not to gloat, but actually because of a comment that was made by a random person on my return from a recent holiday, which has since stuck with me. I assume they felt the need to make a comment since I had requested special assistance so I was in a wheel chair, and mobility aids such a crutches or wheelchairs seem to be an open invitation for people to pre judge.

“Risked it for a few days of fun yeh?”

Listen, some people may not know what a risk assessment is, but anyone living with sickle cell should and will most likely know; since the condition is so unpredictable and a crisis can literally come on at any time. Sometimes every day has to be an evaluation of likely risks, and what precautions I can have in place just in case a crisis comes on.

Every holiday I have chosen not to book, cancelled, or missed, has always been because of one rule I have which I will never ever break:

#RULE: ONLY TRAVEL AT 100%

I don’t know about you, but I feel uneasy leaving my house if my phone is not fully charged, so if my body isn’t there is no way I’m leaving the country.

Being sensible with sickle cell is not only a vital part of keeping well, but it’s a vital part of staying alive.

I say YOLO often, but I value my life and would never risk it for a few days of fun.

When this post is published, i’ll be somewhere in the UK wishing I was on the holiday I was supposed to be on, but had to cancel because my body is not at 100%. I’m sure wherever I am i’ll still be giving thanks for life though.

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Note To Self

Happy New Year and all things 2017!

I didn’t plan for this to be my first post of the year, but I also didn’t plan for sickle cell to interfere with the plans I had in December last year and throw me completely off my game. I believe that in everything we are faced with, there is a lesson to be learned. So even if you can’t see it at the time; take note.

If this post doesn’t help any readers with something that they may be going through, it will definitely be here to help me if I get to this point again in the future.

Note to self: Trouble nuh set like rain.

(Problems often arrive without warning)

 

Despite the odd obstacle here and there, 2016 was an amazing year for me. But when everything in life seems to be on one continuous upward spiral, it’s easy to forget that down even exists. I did. That was until down and I were reacquainted thanks to my beloved sickle cell.

Of all the complications and effects that sickle cell can have, one of the worst things about it is its unpredictability; a sickle cell crisis will Gully Creep into your life quicker than you can say Elephant Man!

I went from enjoying 14 unforgettable days in Gambia soaking up some well needed sun, guest speaking at my own event, donating books and creating memories with some truly amazing people, to spending 11 torturous nights in hospital watching old people die (3 to be precise). One minute I was unpacking my case whilst whining up my waist to Tekno-Panna and reminiscing about the day I had when I wore that stripe bikini. The next minute I was on the ambulance stretcher high off gas and air with a sick bucket, sky high temperature and a pain in my back which I could only describe as a feeling like I was being crushed.

I hadn’t felt this unwell in almost 2 years, and as much as I passionately hate being in hospital, I’m sensible enough to know when I need to go. The last time I had symptoms similar to what I was experiencing I ended up in intensive care, so I knew I wasn’t going nowhere for a while. This was one of those times where I had to just accept what was happening and keep my backside quiet.

Almost two weeks of my very amazing life was spent in hospital, but by the end of it my life felt very far from amazing.

It was early one Saturday morning when I felt like I had hit rock bottom. It was just after 3am so the lights were off and everyone was asleep. I sat up in the hospital bed and was just staring into the darkness. One of the nurses walked passed and whispered a rhetorical ‘you ok’ as she did. I’m glad she didn’t wait for me to answer because I felt my face move into a very stink ‘if looks could kill’ expression as I wondered why she would ask me such a stupid question.

If I was ok would I be there?

Just like that I had this horrible feeling inside me like everything was sinking. I’m the biggest cry baby but I couldn’t even cry because I wasn’t upset or angry. I was just empty and numb.

I had no more energy to be ok, because I wasn’t.

I had no more energy to stay strong because I felt weak.

Note to self: A nuh same day leaf drop it rotten.

(One bit of misfortune does not mean total destruction)

 

Those that know me well would agree that I am one tough cookie when it comes to my health. Anything that comes my way, I can handle it. But I have to admit that this is one time that sickle cell made me crumble and I didn’t think I could.

There are no words that can explain what it is like to know you’ve tried so hard for something but to feel like it was all for nothing. Over that weekend, I reached a level of sadness that I didn’t think I could get to.

Since my mom and I have this corresponding cosmic connection she felt how I was feeling instantly, and my dad could tell as soon as he seen me that I didn’t look like my usual self. Despite having chosen the best parents I would need to keep me going in these situations, this was one I knew I would have to bring myself out of. No comforting words from either of them was going to make this feeling go away. I had to find my own reasoning to pick myself back up.

As I was leaving the hospital a few days later, the reality of the situation became apparent and tears of joy and relief began to fall from my eyes. When my mom noticed and asked me if I was ok and why I was crying. I laughed and said,

“We used to have to do this 4 or more times a year. If we only have to do it once every 2 years now, I can handle it still”

It’s funny how when we’re down we find it difficult to see a way back up again; but there always is. Within a week of being home I bounced back to my normal self. I had a great 25th of December and was still able to party for the new year.

The come back was real!!

Taking Control

Hi readers, my name is Jenica Leah. Some of you may or may not know that I was born with Sickle Cell Anaemia. I never saw myself being able to share something so intimate out of fear of other people’s opinions. I have come to realise that my opinion of myself is what matters more, so I am ready to face my fears. I hope that in doing so I may be able to help someone else who may be going through something similar.

On the 24th February 2015, my doctor told me that I would need to start having blood transfusions every 4 weeks in order to keep my Sickle Cell under control. I was told that if I didn’t start having blood transfusions, my health would deteriorate and I would be in need of a blood exchange within 3 months. Since I had already been through years of monthly blood transfusions as a result of having a stroke when I was 13, the thought of having to go through it all again in my adult life brought tears to my eyes. I was not about to go through all that again. So, I simply said “No”. This time I was going to be in control and make the decision I felt was best for me. Obviously my doctor didn’t accept my answer that easily and we ended up negotiating over my health. In the end, we agreed that we would wait and see what happened in 3 months time, if my doctor was right and I started to deteriorate then I would do what was advised.

Well 3 months turned into 6 months, and 6 months turned into 9. Today, 1 whole year later, blood transfusion every 4 weeks for who please? Certainly not me! Lol.

Today is like a mini birthday for me and a part of my celebration for reaching this milestone is being able to share my journey with you. So here goes.

When I turned 25 in 2014 I became a different person; an unapologetic version of myself who was not afraid to stand in my own truth. It could have been due to the fact that I had a major operation scheduled shortly after my birthday that year. I’m not sure, but it was as if a penny had dropped or something had clicked and I finally decided enough was enough. Life is too short to not put my own happiness and self love before anything or anyone else… I loved the new me.

I began to get to know and understand myself, so much so, that it became easy to identify which situations in my life were bringing me happiness, and which ones were bringing me the opposite. My health was a particular situation that was obstructing my happiness at that time, so I had to take the time to ask myself why. Eventually, the answer came to me; it was because I was not in control. I was just going along with whatever happened or whatever I was told would happen with my health, and just accepting it.

I thought about this for weeks. (I had a lot of thinking time during recovery from the surgery I had). I would speak out loud to myself… because I do that sometimes;

“Jen, you’re the type of person who likes to do what you want when you want, so why have you been allowing doctors to make decisions that they think will be best for you?”

“How can someone else know what is best for you?”

“Why are YOU not in control of YOUR health?”

Deep down I knew why, but it was difficult for me to accept it; sometimes it’s hard to deal with your own home truths. My home truth was that I was scared. I was scared to take responsibility for myself getting sick if I took control.

It’s easy to blame ‘Sickle Cell’ and ‘the doctors’ for things that go wrong, but what about ‘you’.

Some people may disagree with that statement, but I know it to be true from my own experience and what I have seen of others. If someone with Sickle Cell has a really bad crisis, is it just because they have Sickle Cell? If the doctor gives you medication to treat one problem but the side effect causes another, is it just the doctors fault? What have you done for you lately? That’s a question I had to ask myself. Am I eating the right food? Am I drinking enough? Am I resting enough? These were all things that I could control, but I chose not to at the time. I had to make a change. I had to stop being scared. From that point on I decided that if I’m going to be in pain, get admitted to hospital and whatever else may come, it will be because of my own actions, not anyone else’s.

That decision changed my life. For the first time ever I began to think more about my actions and what would happen as a result of them. I realised that if something was wrong, there would always be a valid reason; cause and effect. I delved into different foods and what value they brought to my body and actually changed my whole diet completely. I evaluated my personal life as I realised that my mood affected my health; negative people and negative situations drained energy that my body needed, so they had to go. I joined a gym and introduced regular exercise into my weekly routine. Most important of all, I laid off the drugs. Yes, you read that correctly. There had been times where I would take regular doses of opiates every day to cope with my chronic pain and to manage any sickle crisis I had. Taking morphine was as normal as having breakfast. The thought of what damage these drugs were causing internally gave me enough motivation to do something about it. Doctor’s may prescribe strong medication but they don’t tell you how to stop taking it. I had to start from square one and get in tune with my body all over again. I had to learn to tell the difference between real pain and mimicked pain that was a side effect of coming off opiates.

Let me tell you now, it was not easy making changes to my life. Thinking about how those closest to me must feel when they have to visit me in hospital and see me crying helplessly in pain made me feel guilty. Guilty because I now realised that I had actually been doing nothing to help myself. That guilt however, was also my motivation. I didn’t want the ones that I love to have to go through that again. That motivation kept me mentally strong throughout my journey.

Today, I am so proud of myself for accepting my truth and facing my fear of taking control of my health. I believe that everyone reaches a point where enough is enough and in that moment you can choose to make a change. I chose to make that change and have never looked back since.

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