The Search For Clarity

Stay Bliss turns 3 today and I couldn’t be happier! I have had the most amazing time writing this blog and it is shocking how far I have come since my first post.

My life has changed so much for the better and I believe part of the reason for that is this blog. Being able to write down everything I’m feeling, the good, the bad and the ugly – has been the most therapeutic thing I have ever done. I really do encourage you to find a creative outlet because it helps you work through most things.

For the last few weeks my mind has focused on one topic… when is enough enough?

Even the strongest person who knows to their core who they are, can get caught up in someone else’s life. When you love with all your heart, you take on the triumphs and stresses of another person. Then you find yourself becoming overwhelmed by problems that with hindsight are not really your problem. The selfish part of me, becomes obsessed with being the hero in this story, I so badly want to swoop in and save the day.

So, when is enough enough?

The first thing I need to do is take a big step back. Being overwhelmed with someone’s else stress is comparable to being blasted with blaring music 24/7. It exhausts you, you become so tired and sleep is not making the music stop or go away. You need to step away from the music, close your eyes and rest. Clarity is the best thing for these situations, and taking a step back enables you to make decisions a lot more logically as you are now able to see everything for what it is.

The next thing is to get honest with yourself. Remember who you are, what you stand for and what you need. Is what you currently have making you happy? Are you being supported and constructively challenged? Is this still your happy place? Hopefully with time and clarity these questions become easier to answer. However answering honestly may not produce the answers you desire.

Now you have gathered all this information. Now you have taken a step back and are well rested, weightless. What are your next steps?

This is where my mind draws blank. I need the time away to be able to know this. Nothing is set in stone, you will never know how you are going to feel. Anything can happen, but you will know exactly what you are doing when it does. The time you spend on your own, completely freeing your mind from any and all obligations you are not sure you signed up for will mean that you are ready for the next steps – whatever they may be.

This realisation can be daunting, especially the idea of facing the unknown. This is all I know, how will I cope without it?

Remember who you are and all the amazing things that make you. Look at your support system, you have network of people looking out for you. Look at those dreams your wrote down on a little piece of paper a long time ago. Have you achieved any and if so have you properly celebrated? Have you given it any thought, you are achieving and checking things off your internal checklist!

Most importantly be your own hero. You can go on someone else’s journey with them but you can’t change it. Their journey is theirs, and yours is yours. Focus on yours because if you don’t nobody else will. With time you’ll come to understand whether or not your paths align. In the meantime focus on swooping and saving your day! 

This has been the hardest and most personal post I’ve ever written. My goal never is to offend, but to write the hard truths I’ve been avoiding out in black and white. I know now more than ever who am I but I’m not sure if that is who I’ve become. I know that I’m proud of myself for finally succumbing to this realisation. I’m also immensely proud of Stay Bliss. This blog continues to help me through so much and hope is helping someone else out there also.

Happy 3rd birthday Stay Bliss! ❤
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Sickle Cell & Me

My illness is something I have often talked about but have never written about. I guess it is because when you write about it you can’t cut the tension with a giggle or a little joke. However it I feel like it is an important issue to be aware of especially since it is the 2nd most common genetic disorder in the UK.

The last thing I wanted is to tell a story that was really sad or made you pity me. I didn’t want to write a long piece talking about how difficult life is for me or about how sad I am about never being able to have a ‘normal’ life. I can understand that reading this may be a little hard to swallow, you never want to hear that people you know have struggled in ways that you can not fathom. But the brighter the light is that is shone on these issues, the easier living together in cohesion will become.

So the truth is that it hasn’t been easiest life but it is all I have ever known. Both my parents have a sickle cell trait which meant it was possible but not definite that I would be born with the full-blown disease. I feel like it would have had a different effect on me had I had lived my most of my life not knowing about it.

Sickle Cell disease is a genetic blood disorder. The disorder affects the red blood cells which contain a special protein called haemoglobin (Hb for short). The function of haemoglobin is to carry oxygen from the lungs to all parts of the body. People with sickle cell disease produce unusually shaped red blood cells that can cause problems because they don’t live as long as healthy blood cells and they can become stuck in blood vessels.sickle If you want to read more about the science behind it you can here. When this happens it causes a very painful episode known as a sickle cell crisis. This can last anywhere from a few hours to a few days.

My childhood was relatively normal. All it meant was I had few more trips to the hospital than the average kid. I was physically able to do the same things as the other kids. I didn’t feel very different because a few of the children in my class had sickle cell to, as it is quite common amongst Afro-Caribbean people.  My primary years were full of a lot laughter, fun and the dramatic goings on of a primary school playground. I had quite frequent crisis’ as a kid and would always have to take a couple of days off school to recover.

Describing the feeling of having a crisis is so hard because it is something I only let myself think about in that moment. Once it’s past – it’s gone and not even worth me thinking about. Everyone with sickle cell has a completely different story about their painful experience. Mine always engulfed my lower back  first before moving on to my arm and leg joints. It is an intense, excruciating sharp pain which also feels like it’s pulsating. Sounds awful I know, not something I like talking about. However 9 times out of 10,  after a horrendous long night of my crying out in pain in my mother’s arms, I’d eventually drift off and wake up to find the crisis is over.

This is pretty much how my primary and secondary years went for me. I didn’t crisis to often, probably no more than 8 times year and made sure to completely make the most of the times that I was completely healthy!

Having parents who were always there for me and saw me at my very worst and very sickest has had a lasting impact on me. My positive attitude towards my disorder and the way I have chosen to deal with it came from my mum. She instilled two key things in me.

‘Don’t see yourself as disabled.’ My mum has worked in the NHS for most of her working life in a very different time. She knew that however wrong it is, once you check that box you open yourself up to a discrimination by people who will never admit to it. Her sister – my aunty was born with cerebral palsy, so she saw first hand the ugly face of discrimination and hatred towards the disabled.
Sickle cell by all intensive purposes is invisible. So it would do me well to keep it that way. This is something I have always kept with me. I have never written it on a job application. My philosophy is get in through the door, show them how great you are and when the times comes for you to explain why you need to leave early again for a doctor’s appointment – then I discuss it in-depth. By that time, they know me and like me and appreciate the work I have done and will continue to do for them.

‘Don’t marry someone with sickle cell.’ She doesn’t actually mind who I chose to settle down with but if I was to have a child with someone with sickle, that child will 100% be born with sickle cell. It isn’t something that I’d wish on anyone so if I could help it I’d rather not pass it on.

Using all the advice I got from parents, peers and doctors I was able to live a fun teenage life. I made great friends who were always understanding, I picked up some bad habits that were not great for my health and I pretty much was a normal ‘semi-rebellious’ teen. At one point I got pneumonia, which sucked and at one point my hands and feet swole up like balloons and I had to crawl everywhere for about a week. That also wasn’t great. In year 11 I got gallstones which REALLY sucked and I had to get my gallbladder removed which was nowhere near as bad as I thought it would be. Compared to a crisis it was a walk in the park. My body was  and is really weird and reacts to things in the weirdest ways BUT for the most part I was good. Collectively these things sound quite bad but they happened sporadically over a period of 10 to 15 years.

At 18 I experienced one of the worst thing that can happen to someone with sickle cell – a stroke. Intense fatigue, an awful migraine and lot of confusion is the best way to describe it. I wasn’t afraid because I didn’t know it was happening. It was on Christmas day which was such a pisstake but I didn’t go to the hospital until the next day because I still wasn’t aware of what was going on. At no point when the doctors were explaining what was happening did I feel fear. Mainly because I was tired and confused and because I could see how guilty my parents felt for not realising sooner. Obviously I knew it was not their fault but I guess part of being a parent is feeling completely responsible for everything that your child goes through.

It was only a mini-stroke so within a couple of days I was back on the mend and had regained the feeling in the left side of my body. Friends and family were being amazing. Something I learnt from my earlier experiences of being is hospital is you could ask for pretty much anything and people would bring it to you. I’d ask for rice and peas and curry goat, KFC, magazines and pretty much anything I could think of that I fancied at the time. Also people always just brought you Lucozade, I guess that’s thing you do when someone’s in hospital.

And that was that. I was in hospital for two-weeks, in physiotherapy for a month. I had to drop out of college but in hindsight I could have gone back sooner but chose not to. The year went by and despite the dramatic health issues it was a pretty good year. I had 4 or 5 friends at the time who also weren’t at college so I always had people around me whenever I felt pretty low.
Some days did get very low. They say one of the post-stroke side effects is depression. There were days that I really struggled. Even though I got the all clear from my physiotherapists I never felt the same. I would forget words and lose my train of thought and was convinced that my smile would always be crooked. The NHS were great to me though and got me some help. Although I never have felt like my complete old self again, my mind and body healed over the next year.

Now for the weird part. Because of the stroke the doctors have put me on a treatment called an exchange blood transfusion. Similar to a blood transfusion but instead of just giving me blood, they also remove a few units of my ‘bad blood.’ This effectively means that they make sure by sickle percentage never gets to dangerously high levels. Yes this is intrusive and a bit of headache having to go into a hospital for a day every 6 weeks. However it means that I haven’t had a crisis in years because my blood has never reached ‘crisis’ levels. This is great for me because it means not only am I constantly being protected from the threat of another stroke but I also am currently a lot healthier than I ever have been. The weird part is because the NHS is so limited that you are only eligible for this treatment if you have suffered a stroke or another major traumatic event. So the friends that I have who also have sickle but have not had a stroke can’t get this treatment. I would never claim having a stroke is a good thing because it definitely is not but it’s quite sad that some people have to still be constantly in and out of hospital because that are ineligible.

Overall having sickle cell has shaped the way I see life. I realised a long time ago that I sometimes made myself ill by just thinking that I’d have a crisis. I would take longer to recover because I had reassigned myself to the fact that I’d always be sick. I soon realised that it was going to have to be mind over matter and tried from then on to be more positive. I noticed a difference in  my attitude and pain threshold when my mind-set changed.

Medicine has advanced so much so that the first sickle cell patient has just been cured. I am told that there is still a long way to go before it is implemented in the UK but it is exciting news nonetheless. Creative outlets such as this help me to stay upbeat and give me a chance to express myself.

My body still acts up sometimes. At the moment I have an ulcer on my ankle that I have had for the last year. It can get annoying and stressful at times but I am so grateful that I can still be active and pretty much live a life that anyone else can.

For now I will remain strong in who I am, do what I can to raise awareness and carry on enjoying life.

 

Stay Bliss, Laura

warrior

Click on the links below if you want information about giving blood and/or the sickle cell society.

www.sicklecellsociety.org

www.blood.co.uk

 

 

Down in the Dumps

Lately I’ve been pretty down and I am having trouble pin-pointing why. I’ve been putting it down to hormones but I’m not 100% sure that this is what it is.

It may be the grass is always greener philosophy. Lately it has been my belief that my life is incomplete. It has been missing a few pieces that I will work hard on gathering and putting together. The biggest missing piece when I started this blog was my career. I was unemployed – no money or motive and this is what I needed for my life to begin. Another peice was my independence and freedom, I need my own place to live in order for my life to begin. Yet another is love, I need love in my life in order for my life to begin.

There’s a common reoccurrence here. One that may be the reason for my bad mood lately.

I seem to be always waiting for something to come and change my life. I’m hoping one of these things will remove these feelings of emptiness and loneliness. So far no luck.

I tend to force myself into facing my issue by vocalising it. Most of the time we believe we can’t place the issue because we are not ready to own up to it..

I spoke about not wanting to write a post until the issue I’m facing comes to its natural conclusion. I need to have that ‘aah this how I’m going to deal with it’ moment. Until then I wait it out. I ride the choppy waves and try my best to see the good and be the good in everything. This time I thought I would try something new.

I am by no means past these feelings and maybe it is because I am not ready to be. There is a lesson that can be taken from every situation, I believe it won’t end until you do. I am just left to ponder. Ponder what is that I am trying to grasp at. I’ve given myself a lot of different options as to what this can be down to. Is it down to me feeling not as close to family or friends? Is it down my work life not being a lot harder than I could ever imagine? Is it down to misplaced feelings of love? Or is what I originally I suspected, my monthly treat taking me on whirlwind ride through all the human emotions known to man.. better yet, woman? fake

I know for certain my family and friends don’t play any part in this. I feel as close to them now as ever did. It is true though, work is getting tough and I am not used to this amount of pressure. Progression and promotion became my two most important things when I started working for the NHS. I’ve seen it all. I’ve seen people who were vocal about where the wanted to be and put the hard work behind it and have now shot up the ladder. I’ve also seen the people who were either content or just waiting for opportunities to manifest for them – they are still where they have been for years. I guess this worries me, what kind of person am I? I would like to be the first one but am I vocal enough and does my work back this up?

Misplaced love? Could be.

I don’t think I can blame my cycle for this one. Yes my feelings intensify around this time but these are feelings that have always been there.

So there you have it. A post full of questions and doubts. I often talk about the need to be positive and see every situation in a positive light. This I still very much believe. However you need time to self-analyse. Where you don’t look at things under any kind of light. You just look at it how it is. Almost like looking at all the puzzle pieces for a while before you attempt to put it together.

I think the lesson I have gathered from my feelings at the moment is that self-reflection is important. Plastering a massive smile on your face and acting as if everything is okay is not always the solution. Admit it. I’m not okay. And that’s okay!

Happiness is an inside job and that it is! I think from now on I’m going to strip myself down and see myself without all the stuff I need that will ‘make life begin.’ My life begun 24 years ago, I am in the midst of it.

No more waiting and anticipating for what it is that will finally make me happy. I need to do that myself. Without the money, the house, the family, the friends, the partner. Me and only me.

As Ru Paul says – ‘If you can’t love yourself, how the hell you guna love somebody else?!’ Can I get an amen?down

Stay Bliss, Laura