Here We Go Again
“Caught Slipping”
Whenever I feel ill I'd exhaust all my options to make my pain go away, drink hot water, use my painkillers, fill up my hot water bottle, find a distraction, sleep etc...and most times it works, but sometimes the pain is just so bad that I find myself calling 111 and they’d confirm that I should be calling 999......*sighs*.
“Turn Yourself In”
Whenever I’ve called 999 I’ve done it so reluctantly, but when I get a response (which is always & at the first ring may I add) I start to cry. I cry the tears caused by the pain which I’ve been fighting to hold back, I cry in the disbelief that my body could betray me to the point where I can no longer look after myself, and I cry because of the relief that has come from getting an answer, that the ambulance are on their way.
I’m such a different person when I’m ill and only a few of my friends can testify to this. You’ve seen me at my worst if you’ve seen me right before I’ve called the ambulance, it’s not cute, but that’s really the least of my worries. All I know is I have pain & the pain needs to go ASAP.
When I receive confirmation that the ambulance are on their way I start packing. One thing I know is that if I’m ever ill enough to call the ambulance I’m not leaving the hospital on the same day. I’m normally there for 4-7 days so I’m s l u g g i s h l y packing my loose fitting clothes (dashikis & leggings will forever be my go to), toiletries and devices.
I then make phone calls to friends & family to let them know what’s wrong & where I’ll be. I’d call the haematology ward ahead of time and ask them to prepare a bed for me which minimises the time spent waiting in A&E.
The ambulance normally arrives within 10mins of me calling them. They give me gas and air, ask questions about how I’m feeling & then I’m normally given my first dose of morphine which KNOCKS. ME. OUT.
The following 3-5 hours usually consists of me falling in and out of sleep. You know them ones when you were young & you’d fall asleep watching tv & next thing you know you’ve woken up the next day in your bed? Yeah, while I’m in & out of sleep I’m being transported from my bedroom to the ambulance to A&E to the haematology & oncology day ward where I’m finally admitted as a patient.
“Locked Up”
My vitals are recorded for the umpteenth time and I am hooked up to the IV drip which is constantly supplying saline solution and/or medication directly into my veins.
Once the nurses have done what they have to do I ask for the curtains to be drawn back and I see the other patients in my room, normally 3-5 elderly female cancer patients, and like always I’m the odd one out.
During my multiple stays at various hospitals I have only seen 1 other sickle cell patient who’s been admitted the same time as me, but honestly I don’t really expect there to be anyone, at least not in this county, due to the low number of us that would need hospital attention at a time (in comparison to people with other conditions). So us sickle cell warriors are grouped with cancer patients, and it makes sense, a lot of our treatments are similar to those diagnosed with leukaemia and lymphoma.
The looks I get from the women are looks of sadness, I’m sure they think “she’s too young to have cancer poor girl”. Eventually they realise I’m not there for the same reasons. I dash them all a friendly smile and go about my business.
The periods of time when I am ill, my life outside the hospital is put on an indefinite pause. My only focus is to get better. As a student I’d email my lecturers letting them know what’s happening & ask for extended deadlines with my course work, as an employee I call my manager to let her know I won’t be coming in. Stress is actually my biggest trigger of a sickle cell crisis so I try not to worry about these things as it won’t improve my current situation.
Hospitals are extremely boring. I find that if I’m not distracted I start thinking very negative thoughts. The environment hospitals provide is far from a positive one. When literally everyone around me is seriously ill my mood reflects that.
There have been instances where friends would visit me unexpectedly and would be worried because they initially catch me looking very upset, which is so unlike me, and without distractions I’ll notice the pain more which never ends well.
So, to entertain myself I’ll either call a friend, have friends visit, watch something on my laptop or spend hours scrolling through social media.
The rest of the day is spent in bed chilling, using medicine, having my vitals checked every couple of hours and drinking bucket loads of water.
The next day, and every day until I’m discharged, I am seen by my haematologist who is accompanied by several student doctors. She assesses me and explains my course of treatment. This doesn’t take more than 10 minutes and she’s off to see her next patient.
My treatments typically include painkillers. They start off strong. Morphine would be injected directly into my bloodstream and I will feel it’s effects instantly. At the beginning of my time in hospital I’m in the most pain so I’d be receiving doses of morphine as frequently as legally possible. As my pain lessens I received oral morphine, which does the same job but it takes longer to kick in as I am digesting it as opposed to it going directly to my bloodstream.
Eventually when the pain is not as persistent (normally 3 or 4 days into my admission) I’m using my normal painkillers, dihydrocodeine and paracetamol. This will be used every 4 hours until the pain has significantly reduced.
During my admission I may be recommended a blood transfusion or a red cell exchange, depending on my haemoglobin levels, after which the length of time I spend in the hospital is dependant on how busy the hospital ward is. If it is not busy then I stay until I fully recover, if it is busy and for example another patient needs my bed, I’d be discharged and advised to continue using my painkillers at home until I’m better. (Fair? That’s a conversation for another day).
“Fresh Out”
When I’m finally home, which is typically after a week or so, I try and pick up from where I left off. Health wise I continue doing what I’ve always been doing - medicine, water, warmth...the usual.
Work wise I play a very long game of catch up. Trying to find a balance between taking it easy and tackling my ever growing work load. It’s difficult I can’t lie, but I’ve always made it through (thank you Jesus!).
Being in hospital always reminds me of the important things in life. It gets rid of all your “problems” and it reminds you of what really matters in life. For me this is God, good health, family & friends. It shows you that the other problems you think you have manage to sort themselves out one way or another and you realise that some things aren’t as serious as you make them out to be.
But yeah, that’s my general hospital experience. I’d love to hear about the similarities & differences you guys experience.
In the meantime stay healthy & hydrated!
Tito xx
p.s. Today is day 600 of me being hospital free (isn't God amazing?!). I just want to thank you all for following, supporting and encouraging me on my journey. I hope you are encouraged by my stories & I pray God blesses each and every one of you!!!
Whenever I feel ill I'd exhaust all my options to make my pain go away, drink hot water, use my painkillers, fill up my hot water bottle, find a distraction, sleep etc...and most times it works, but sometimes the pain is just so bad that I find myself calling 111 and they’d confirm that I should be calling 999......*sighs*.
“Turn Yourself In”
Whenever I’ve called 999 I’ve done it so reluctantly, but when I get a response (which is always & at the first ring may I add) I start to cry. I cry the tears caused by the pain which I’ve been fighting to hold back, I cry in the disbelief that my body could betray me to the point where I can no longer look after myself, and I cry because of the relief that has come from getting an answer, that the ambulance are on their way.
I’m such a different person when I’m ill and only a few of my friends can testify to this. You’ve seen me at my worst if you’ve seen me right before I’ve called the ambulance, it’s not cute, but that’s really the least of my worries. All I know is I have pain & the pain needs to go ASAP.
When I receive confirmation that the ambulance are on their way I start packing. One thing I know is that if I’m ever ill enough to call the ambulance I’m not leaving the hospital on the same day. I’m normally there for 4-7 days so I’m s l u g g i s h l y packing my loose fitting clothes (dashikis & leggings will forever be my go to), toiletries and devices.
I then make phone calls to friends & family to let them know what’s wrong & where I’ll be. I’d call the haematology ward ahead of time and ask them to prepare a bed for me which minimises the time spent waiting in A&E.
The ambulance normally arrives within 10mins of me calling them. They give me gas and air, ask questions about how I’m feeling & then I’m normally given my first dose of morphine which KNOCKS. ME. OUT.
The following 3-5 hours usually consists of me falling in and out of sleep. You know them ones when you were young & you’d fall asleep watching tv & next thing you know you’ve woken up the next day in your bed? Yeah, while I’m in & out of sleep I’m being transported from my bedroom to the ambulance to A&E to the haematology & oncology day ward where I’m finally admitted as a patient.
“Locked Up”
My vitals are recorded for the umpteenth time and I am hooked up to the IV drip which is constantly supplying saline solution and/or medication directly into my veins.
Once the nurses have done what they have to do I ask for the curtains to be drawn back and I see the other patients in my room, normally 3-5 elderly female cancer patients, and like always I’m the odd one out.
During my multiple stays at various hospitals I have only seen 1 other sickle cell patient who’s been admitted the same time as me, but honestly I don’t really expect there to be anyone, at least not in this county, due to the low number of us that would need hospital attention at a time (in comparison to people with other conditions). So us sickle cell warriors are grouped with cancer patients, and it makes sense, a lot of our treatments are similar to those diagnosed with leukaemia and lymphoma.
The looks I get from the women are looks of sadness, I’m sure they think “she’s too young to have cancer poor girl”. Eventually they realise I’m not there for the same reasons. I dash them all a friendly smile and go about my business.
The periods of time when I am ill, my life outside the hospital is put on an indefinite pause. My only focus is to get better. As a student I’d email my lecturers letting them know what’s happening & ask for extended deadlines with my course work, as an employee I call my manager to let her know I won’t be coming in. Stress is actually my biggest trigger of a sickle cell crisis so I try not to worry about these things as it won’t improve my current situation.
Hospitals are extremely boring. I find that if I’m not distracted I start thinking very negative thoughts. The environment hospitals provide is far from a positive one. When literally everyone around me is seriously ill my mood reflects that.
There have been instances where friends would visit me unexpectedly and would be worried because they initially catch me looking very upset, which is so unlike me, and without distractions I’ll notice the pain more which never ends well.
So, to entertain myself I’ll either call a friend, have friends visit, watch something on my laptop or spend hours scrolling through social media.
The rest of the day is spent in bed chilling, using medicine, having my vitals checked every couple of hours and drinking bucket loads of water.
The next day, and every day until I’m discharged, I am seen by my haematologist who is accompanied by several student doctors. She assesses me and explains my course of treatment. This doesn’t take more than 10 minutes and she’s off to see her next patient.
My treatments typically include painkillers. They start off strong. Morphine would be injected directly into my bloodstream and I will feel it’s effects instantly. At the beginning of my time in hospital I’m in the most pain so I’d be receiving doses of morphine as frequently as legally possible. As my pain lessens I received oral morphine, which does the same job but it takes longer to kick in as I am digesting it as opposed to it going directly to my bloodstream.
Eventually when the pain is not as persistent (normally 3 or 4 days into my admission) I’m using my normal painkillers, dihydrocodeine and paracetamol. This will be used every 4 hours until the pain has significantly reduced.
During my admission I may be recommended a blood transfusion or a red cell exchange, depending on my haemoglobin levels, after which the length of time I spend in the hospital is dependant on how busy the hospital ward is. If it is not busy then I stay until I fully recover, if it is busy and for example another patient needs my bed, I’d be discharged and advised to continue using my painkillers at home until I’m better. (Fair? That’s a conversation for another day).
“Fresh Out”
When I’m finally home, which is typically after a week or so, I try and pick up from where I left off. Health wise I continue doing what I’ve always been doing - medicine, water, warmth...the usual.
Work wise I play a very long game of catch up. Trying to find a balance between taking it easy and tackling my ever growing work load. It’s difficult I can’t lie, but I’ve always made it through (thank you Jesus!).
Being in hospital always reminds me of the important things in life. It gets rid of all your “problems” and it reminds you of what really matters in life. For me this is God, good health, family & friends. It shows you that the other problems you think you have manage to sort themselves out one way or another and you realise that some things aren’t as serious as you make them out to be.
But yeah, that’s my general hospital experience. I’d love to hear about the similarities & differences you guys experience.
In the meantime stay healthy & hydrated!
Tito xx
p.s. Today is day 600 of me being hospital free (isn't God amazing?!). I just want to thank you all for following, supporting and encouraging me on my journey. I hope you are encouraged by my stories & I pray God blesses each and every one of you!!!
Comments
If I am correct, you do reside in the UK? What I find most interesting is the way you describe the NHS ambulance service. They arrived in 10 minutes and commence treatment immediately. It seem to be an excellent service and they understand the necessary treatment for a paitient having an SC crisis. This is great and should be the norm in other countries, including The Bahamas where I live.
I have HbSS, I will be 70 years old in two weeks. I was diagnosed with SCA at the age of 8 years old. I have learn to take care of myself by following a very 'strict regiment' that I follow each and every day. Because of this, I was only in hospital 4 times in my teens and 20's. I was transfused just once during my gallbladder operation and I have not has a major SC crisis in over 30 years.
In my early years, I was fortunate to be supported by my mother and 4 sisters, one of whom is a doctor. We studied and researched Sickle Cell Anemia, and over the last several decades, I have learn the Do's and Dont's of managing my Sickle Cell health. This is the primary reason why I have not been on hospital since my 20's and I have not has a major SC crisis in over 30 years. Also, I live in The Bahamas where it never gets real cold, maybe another reason for my remaining healthy.
Sometimes, when I listen to SC warriors talk about their being hospitalized, it is almost like it is a special event they seem to enjoy. Becaues of the way I manage my Sickle Cell health, I never even think of going to hospital, becaues I focus on PREVENTION and not the PAIN. Hence, for the above reasons, I ask you: 'Are you personally doing enough to remain well and to stay out of the hospital?
Monte Pratt
SC Warrior
The Bahamas.
Thank you for your comment & I’m glad you liked the post.
Yes I do reside in the UK, and I honestly thank God for the NHS and the ability of the first responders to react so quickly. I am hoping that one day I will be the norm in all countries.
Oh wow, happy birthday in advance & thank God for your good health.
I must say though, this post is me explaining my general hospital experience during the times I used to be admitted more frequently. I manage my health to the best of my ability, and I do have people helping me, however there are, and will always be factors that effect my health that are unfortunately outside of my control.
One thing I can promise you is that being hospitalised is far from an enjoyable experience for me, it is always a last resort, and I am sure that it is the same for the majority of (if not all) sickle cell warriors.
I am doing all I can do to improve my health and I am also focusing on prevention, I believe that this is why I have been able to celebrate day 600 (now 601) of being hospital free.
I’m praying that, like you, I will be able to celebrate 40+ years without being admitted to the hospital and also being crisis free.
I have been pretty transparent about the things I do to stay as healthy as I possibly can in a few of my previous blog posts but if there is something that you think would help in addition please let me know. I am always open to suggestions on how to upgrade my care plan and it may also help others with sickle cell who read my blog.
Thank you again,
Tito
I have just celebrated my fifty fifth birthday and have been crisis free for the last 10 years. I have been on Hydroxariya (Ithink that is how you spell it but not sure) and I think that this has been the main reason why I have been crisis free. What I have learnt is that Sickle Cell Disease does not affect all suffers in the same way. Thank Hid that some of us are able to do certain things that really work for us but please understand that some people with SCD have regular crisis no matter what they do or no matter how well they look after themselves.
I spent the first 16 years of my life in and out of hospital dealing with the most horrific pain possible which caused me to even ask God to take my life. SCD and the pain you experience is not a joke and nobody would enjoy this or the experience of being hospitalised.
My experiences have scarred me and if it wasn't for my faith and belief in God I would not be the strong positive person I am today.
No matter what I did to look after myself crisis were my best friend.
After my parents nearly lost me as a child several times I was put on regular exchange transfusions. I spent over thirty years on this treatment which kept me crisis free but that in itself was still a battle. We need to realise that although we all have Sickle Cell Disease it does not affect all if us in the same way. This is the reason why it is good to share our experiences. We need to be positive with one another and support one another. It is not a nice thing to have and nobody enjoys any part of it.Let us continue to listen to one another sharing positive experiences while helping one another.
Thank you for your comment, I’m trying my best to raise awareness about it, I honestly believe that is the first step to improving our treatment/quality of life.
Irrespective of the number of times you get ill, all sickle cell warriors have moments when we feel like enough is enough, that the fight isn’t worth it but I want congratulate you for your persistence. I keep saying it’s not easy because it really isn’t but keep going & stay healthy ♥️
Tito
I’m so happy you like my blog & I’ll definitely check yours out. Yeah I’ve heard a lot about the health system in Nigeria and how unreliable it is. I’m very intrigued to know the steps you take when you feel like you need medical attention. I always assumed that the health professionals in Nigeria would be more understanding about sickle cell because it is way more common there. I pray that it does start to improve tho.
Stay blessed
Tito xx
I’m reading your blog for the first time, being introduced to it through my mum. I have sickle cell as well and I haven’t had a crisis in about a year because of Hydroxycarbamide or some people know it as Hydroxyurea. I already really like your blog and would love to hear more advice on what to do while having a crisis. Sometimes, however, I can’t help feeling upset about my condition. I would really like to know what you would do if you ever felt like that.
Continue to keep up your blog and look after yourself.
Thank you so much!
And then I read about the 600 days and oh, dear Lord I thank you. Now tears of gratitude.
Please remain in the new found freedom.
I say new because 600 is only a short stint and I am believing for a lifetime to bask in this new strength. So you are not only a testimony because you remained faithful in the jaws of torturous Pain, you are also a testimony because you demonstrate that Challenges will come and not stay for ever.
Now others could emulate your faith and look forward to the day they could look back and count 10,20,..100,..600,..1800,... 90000,... 10m days -- that's over 27,000 years, who lives that long!
You are prove that the pain we go through has an end... You are free indeed.
Thanks for sharing your invaluable experience. It's more touching than a relative of mine becoming President of America.
Segun Odusote
Heyyy,
I agree 100% lol, I made the account such a long time ago, it’s due for a change. Happy Birthday & Congratulations...10+ years that’s nothing short of a miracle!!!
Yeah I’ve been using hydroxurea since 2005 and it has such a significant effect on my health - I owe a lot to it!
I consider myself very fortunate in the sense that my health could be way worse because I know people really suffer with this condition, so irrespective of how bad it may get for me I’m always thankful because it could be worse.
I find that there are situations where I’ve done all I can to keep myself healthy but I still happen to fall ill, I’d be so confused as to why but there are many other factors outside of my control that would cause a crisis & I can’t lie, I was pretty offended after reading the comment where it was suggested that I don’t look after myself properly and that I find the hospital experience enjoyable. That is so far from the truth and I though people with sickle cell would be the most understanding...I guess not
Thank you so much for sharing your experience and I pray you continue to grow in good health xx
Tito
I really do hope you see my response (sorry for the delay).
I am so happy that you came across my blog and I hope it helps to know that you’re not the only one going through what you’re going through. Congratulations on your one year no crisis, you must be so proud!!!
I have put a few tips on my blog post called “When In Crisis” so you should defo check it out https://hersickledjourney.blogspot.co.uk/2017/11/when-in-crisis.html
There are so many times in my life where sickle cell has proved itself to be a hinderance in my life and it is something that gets me down more times that I like to admit…especially when I think about how it may affect my future. I consider myself to be very fortunate because when I am feeling down I have a couple close friends who I can vent to, who even though they don’t have sickle cell themselves, they try their hardest to relate to me and comfort me. They help me to remember all the times sickle cell has presented itself as a hindrance in the past and how every time I have somehow managed to overcome the situation. Remembering how for I have come is very encouraging for me as it proves to me that I am able to keep going and that the pain won’t last forever.
This is also what I want you to do. Remember how far you’ve come and be proud of yourself for doing so well.
If there is anything else you would want to discuss, or even if its just to say hi, please do reach out to me!!!
Tito ♥️