Hello and Welcome…

I have been wanting to write a blog for quite a few years now and although I have many thoughts that can be put onto paper (or typed via my wordpress app on my phone!), I never felt my words would be liked, appreciated, wanted or even worthy enough for others to want to read. The funny…or not so funny thing is that all of the above is actually how I feel about myself…more on that later.

So am sat in my local cafe, deciding that right here, right now, is as good a time as any to spill me!!

I’m not the most outspoken of people and I am whatever the polar opposite of whatever confidence is, but I want and deserve be heard. I feel that what I have to say is important and doing it this way means I am able to express that without coming too far out of my comfort zone – this is my step 1 of becoming a confident woman inspite of the obstacle placed in my life.

What obstacle would that be? It’s the awful obstacle of being born with the world’s largest genetic blood disorder, the not so wonderful world of Sickle Cell Disease. This is a condition that in the majority affects African and African-Carribbean folk, it is a genetic illness that cannot be caught but can be carried. Sickle Cell, causes me and many others to live each day in a pain so awful it could only be compared to evil (I cannot bear that word, however my vocabulary feels that that is the most suited word for the pain). It is constant and often times, debilitating. There are numerous other side affects, but I dont want to bog myself or others down with all that jazz right now!

So, now I have all the woe is me Sickle Cell jargon out of the way, lets talk ME, and how WONDERFUL I AM or at least how WONDERFUL I AM BECOMING 😛 I aim to be stronger, braver, a true daughter of the Lord, confident, trusting, honest and just an all around beautiful woman. I reckon I’ve quite a way to go and am ready for the best times of my life. These times will involve my FAMILY, my small group of very important FRIENDS, my church BROTHERS & SISTERS and eventually – when I’m brave enough – my slew of NEW FRIENDS & EXPERIENCES.

Come with me…

Sickle Cell & A Social Life??

Can you partake and enjoy a “satisfying” and “fulfilled” social life (partying, meals out, cinemas etc) whilst having problematic Sickle Cell? Well, yes you can…but also, not so much!

The unpredictability of my Sickle Cell means that one moment I can say yes to a night out with friends and the joyful anticipation of what to wear, who you’ll see and what a great time we’ll all have together and then the day before, morning before, even an hour before and my Sickle Cell will rear it’s ugly painful head. It’s almost as if my Sickle Cell knows that I’m about to have some much needed fun and be a (sensible) social butterfly for just one, single afternoon/evening/night and not “Sick Chantelle”… “Not on my watch”, “Not today missy”, “Are you having a laugh”, “Go out and forget about me? Oh heck no” is what I hear my Sickle body shouting.

I really, really, really dislike these frequent moments, I don’t want to be known as being flaky, unreliable, undependable and boring, I don’t want to be and don’t like being the friend that no-one invites out anymore because they imagine that I will cancel as I unfortunately have HAD to do, one too many times.

Oh, how I long to have a fruitful yet manageable social life, one that consists of a visiting a cocktail bar, trying different restaurants, visiting museums etc in order to simply live a fulfilled life with a few really good friends.

A social life for me is very well organised and involves pacing myself, keeping hydrated (with water, not cocktails as mentioned above!), not over-exerting myself by walking for long periods of time or dancing for  too long. Making sure that on my return I get myself plenty of rest, lots of sleep, pain therapy and just giving my body time to settle. Now please do not misunderstand what I am saying here, I am absolutely not the last girl on the dance floor, I don’t drink to get drunk, I don’t go on highly desired walking trips – all of which I’d love to do – because this ruddy illness will not allow me to do such things, my body just cannot manage it, both medically, physically and even emotionally as I feel such guilt for daring to enjoy myself socially…before the pain kicks in.

My lack of social life cannot be blamed entirely on my Sickle Cell, there are other constraints as to why I do not socialise a great deal including my own insecurities but this is about ME and Sickle Cell and my views, opinions and feelings around that. Also, I am a 37 year old woman whose friends, ex friends and acquaintances all have their own lives that naturally revolve around work, children and their significant others, this is the “natural” process of life. So I fully understand (and begrudgingly) accept that life goes on regardless of me and my  attendance in their lives. Life happens and time does not wait for any-one.

In conclusion, yes you can have a social life with Sickle Cell but don’t expect it to be (or certainly don’t force it) to be the way it is for those who do not have a life altering, unpredictable, chronic illness, and don’t expect the same group of “friends” to stick around. My social life requires expert planning and self-management, early nights, pain medication, those not too high sexy heels for when you eventually get a night out and loyal, empathetic friends!!

 

That Time of Month…Blood Transfusion Time

In hospital today having my 4 weekly blood transfusion. As a Sickle Cell individual this has become a regular installment in my life.

The reason why today is note worthy – in my opinion – is because from 11am to 2pm, I have had 5 seperate nurses try 9 seperate places on both arms in the aim to find just one successful vein. My veins are the realky poor and have unfortunately become increasingly worse since having regular hospital appointments all requiring regular injections. A majority of my veins are now scarred and am left with bruises in the aftermath.

 This is due to having to have hundreds of blood transfusions over the years (I was diagnosed with Sickle Cell Anemia aged 18 months. Am now 37). I am currently having to have this procedure every 4 weeks ever since undergoing a kidney transplant (the kidney failure was brought on by my Sickle Cell). 

*There are several additional complications that one can inherit along the way: organ failure, diabetes, ulcers, eyesight problems, hip replacements and more.*

My new kidney – which is 2 years and 5 months old and donated via my strong as an ox sister! – requires a higher blood count than what mine is, my blood count/haemoglobin levels run between 6 and 8, a “normal” blood count is about 12 to 15. So whenever my count drops, my renal functions plummet, and plummeting renal functions is not a good thing, especially when you need to take care of such a special gift of life with every fibre of your being. I need this special gift to last me a life time ( In Jesus Name).

Now, do not think that I am feeling angry or sorry for myself because I complained at the start about having to be pricked with 9 seperate needles, in 9 seperate places by 5 different nurses – annoyed yes but angry and woeful? NEVER that. I am EXTREMELY lucky that there are thousands of people out there who donate their beautiful precious blood for folk like me and many others . I am EXTREMELY lucky that I was’nt on the transplant waiting list for long as my sister had secretly already been going through tests to see if she could be donor. I told you from my bio that this blog was never going to be pitiful, sad, angry at the world or seeking sympathy. This is just me, these are just my facts and I really hope that someone, somewhere will be able to take something from this, that it helps others and urges those with or without Sickle Cell that we all have a “thing” and its how we manage with our “thing” that makes us pretty bad ass.

This is a little insight into a day in the life of someone who has Sickle Cell, a pretty major complication of Sickle Cell and what it takes and means to have regular blood transfusions in order to stay well with the Sickle and well for the kidney aka Donna (suitably named after my sister).

My blog is about being put under difficult circumstances and figting with all I have. I find the strength to fight from the power I gained through God and the undeniable love I have for Him and He has for me. I find the strength through my mother, sister, family and close friends who help me along this path that I take with my talawa self!!

I’ve Arrived..I think..!

So, I have been wanting to write a blog for quite a few years now and although I have many thoughts that can be put onto paper (or typed via my wordpress app on my phone!), I never felt my words would be liked, appreciated, wanted or even worthy enough for others to want to read. The funny…or not so funny thing is that all of the above is actually how I feel about myself…more on that later.

Today, I attended an event called ‘Women of worth – What’s love got to do with it’, where I sat questioing what is my worth and what really is love? I left deciding, though I may not know my worth right now,  I am determined to  discover and embrace my worth and to love myself as much as I love to love others. I am a woman of worth… in training and that’s ok so long as I reach my end goal of feeling worthy of love from others.

Having Sickle Cell has made me feel inferior and difficult as a woman, friend, family member, life partner and citizen of the world. But who would want to love a woman who enholds the baggage of a critical, life threatening illness – on top of all the other nuances that females have?  A misrepresented, misunderstood, little knowledge of condition that does affects me physically, mentally, emotionally and socially. Over the years I have seperated myself from social situations as I feel so awkward and am extremely shy, debilitatingly so at times. I have come to the realisation over the years that this is all my fault (I learnt today to take responsibility of one’s actions, thoughts and behaviours), beacuse throughout my life I have either been alone during hospital stays -apart from my wonderful mother always being by my side – when my Sickle Cell decides to attack, when ill at home I would stay indoors alone, and so over the years my pro-longed periods of solitude has attributed to me feeling anxious when around people whether they are a friend or someone new. I would suffer alone as I never wanted my friends and family see me in pain and see me feeling so low, why would I put somebody else through that, especially when at times I didn’t even want to see or be me…does that make sense to you?

A lot was learnt today in that (my) negative thinking leads to a negative output or projection. Why don’t I turn my negative thinking into positive thinking and decide that letting my friends and family see me when I am in pain or feeling particularly down in the dumps can only mean that others will see, learn, understand and respect what I have to go through, as a woman, on a daily basis. Having Sickle Cell, dealing with Sickle Cell, struggling with Sickle Cell and desperately trying to survive Sickle Cell all day every day while presenting myself to the world with a smile is contributing to making me become a WOMAN OF WORTH.