When Courtney asked me to write a blog on how I deal with pain, my immediate thought and response to him was – ‘yes, sure but I must say, sickle pain feels like long history’.
Does it? I asked myself.
I was on a pain train. The positive side which I am grateful for is that the train has seized to move for a couple of years and I hope not to have this train resume it’s movement ever again.
The last time I had any sort of major sickle pain was in 2012.
Before this time. I would have an average of one acute chest syndrome crisis in a year – specifically during the winters. My crisis were usually around this time of the year, predominantly my chest and back, throbbing in excruciating pain that rendered me helpless. These crises would always start in the middle of the night with minimal oxygenation. I called it the ‘nocturnal crises’.
Who else tends to have a crisis between 1am and 4am?
How have I dealt with pain?
If I am being honest, not a great deal. When/if my sickle pain is enough to make me dial 999 to get an ambulance to my flat, then seeking medical help in hospital is the only way I can confirm I have dealt with pain.
Generally, I get two levels of pain. The one described above where honestly speaking, I cannot help myself and the low level pain which is often quite isolated – perhaps in the fingers, or just the ankle, or my jaw, wrist etc. This kind of pain is usually negligible and I can work and play through it, sometimes without any pain relief. I have to add that my threshold for pain exceeds reality. I can cope for hours without pain relief until I get to excruciating levels before I scream for help. This isn’t good.
One of my doctors told me as much as I have a great level of pain threshold and tend to avoid pain relief due to the hallucinations after being given them, sometimes stopping the sickling is a good thing to prevent further organ damage. The only way to stop it is to manage the pain.
But, I have never really liked the effects of the strong opiates so I try to avoid them as much as I can.
Anyway, If I get the pain in more than one area at the same time, then that’s enough warning for me to start medicating at home with my locally prescribed analgesics.
I would take a cocktail of codeine and Ibuprofen, drink about half a liter of water, put out any noise around me, have a lie with a snug blanket and have a little snooze. More than half the time, I wake up feeling pain-free. If I neglect the initial sickling pain nudging on more than two areas for too long, I am likely to have failed in managing my condition at home. I would have guessed at this point, that I have sickled in more parts of my body compared to when it started so I am likely to run into problems.
But rather than focus on how I deal with pain in sickle, I tend to focus on how to avoid pain in the first instance as I tend to be more proactive and less reactive in my care.
With the help of the hematology clinical team, and a substantive understanding of how sickle affects my body and my condition, my quality of life is great.
My treatment- Hydroxicarbamide is the treatment I have used to date to manage my sickle care. When I started a number of years ago, I was frightened of the toxicity of the drug and how it may potentially affect me. However, it’s affected me quite positively and I get no pain. I have never suffered any sickle complications as a child or adult. My blood levels and HB fetal are great. My fatigue levels are better than it used to be. I don’t get jaundiced eyes or nails, I haven’t suffered any ACS or chest infections. No transfusions! My health has been generally great.
I do get the occasional headaches and my nails get dark from time to time. I am more than happy to live with those side effects than to have pain and constant hospitalisations, the side effects are non- existent (and superficial) in the scheme of things.
I have a great career, I am widely travelled, I volunteer and help communities,
I enjoy culture and have a great social life and my mental health is amazing. I have my own charity in Africa which supports people with sickle. I participate in every thing sickle nationally and locally where possible.
I attend the sickle cell children’s holiday and it’s so fulfilling to care for the little ones with sickle cell.
I volunteer for the Sickle Cell Society and support the Hackney support group, SOLACE.
I work with clinicians at specialist centres to support service improvement programmes in sickle services.
I write blogs, poetry, books, watch lots of movies, analyse them and drink lots of water, teas and of course eat cake.
My diet is fine. I try to eat my greens and fruits. My partner helps me with cooking healthy diets. However, no kidding, I snack on lots of crisps, nuts, etc
I do not drink soda and I rarely eat fried foods but I love a good old steak and some spinach and kale on a Wednesday!
I drink 6-8 glasses of water a day. 2 when I wake up, 2-3 at work and 2 before bed. Side effects? Lots of toilet breaks.
I drink alcohol very rarely and when I drink, I have a nice red wine but must drink lots of water before and after. I have never smoked and I practice yoga and do exercise at home when I feel energetic during the week.
I dance a lot too!
Because I travel up to 5 times a year, sometimes. when I fly, I drink lots of water the day before and the morning of my flight. So I don’t get a crisis after a long haul flight.
I stay away from caffeine. I take frequent breaks and hydrate a lot and dress up warm.
I buy my annual world travel insurance for protection and always have my travel prophylactics if I travel to Africa
The NHS are a caring organisation and I care about the NHS because they ‘got’ me. It is why I chose a career in health (after working for the Foreign Office) and have worked on local and national projects in England. My job is highly pressured but the NHS cares about people so the legislations protect me from any potential harassment due to my long term condition.
I take lots of leave, when I am tired. I book spas and massages to help me rejuvenate.
I read a lot. Books, articles, news etc
Above all, I live life and sometimes forget I live with sickle cell. My mindset is mostly positive and I believe in mind over matter.
I have a living family who love me to the moon and few amazing friends who look out for me always.
I care about everyone suffering with sickle cell and I believe focus should be less in dealing with pain and more in avoiding pain all together. Make the right choices.
Life is too short to be in constant pain…
The power is in our hands.