Mwape's Release

Symptomatic: My Sickle Cell Trait Journey

9. Apr, 2022

Coping Mechanisms - Acute and Chronic Pain

Struggling to Function so I Sleep

I know that when I am in pain, acute pain, I struggle with functioning. Much of my time in pain is spent asleep, drugged up when it is that severe, or just at total zone out mode.

However, this pain I am referring to is intense, that I do spend much of my time asleep, the headaches are unbearable literally, because they cost me my smile, even when I want to smile! It hurts, every inch of my face feels like it's about to crumble, it's so tight that my forehead feels wrinkled up and my stomach is so sick it's like I've been riding a thousand roller coasters or been lost at sea for months in heavy storms! The constant churning literally makes me hurl, it's such a fight mentally to will myself to not throw up. (I had a bad experience where I once got sick and ended up with blood spots all over my face, that I am absolutely petrified of being sick now).

Drugged up on Medicine

I take quite a bit of medication, just to manage the headaches caused by my blood pressure and again separate medication for the acute pain too. These don't really touch them fully, but they help me feel a little out of it or at least drowsy, so that when they do come on, I am able to fall asleep. I don't want to spend days on end in a blacked out room, but I could so easily do so.

I need to sleep for hours on end it seems, but I want to try to enjoy the physically better days when I am able to. It's not always possible, but when I can move a little better or when the sun is shining I've decided to try to just lay back, reflect, journal or go for a nice little walk. I haven't been able to walk alone for a long time, mainly because I need physical support. I have been in too much pain to go anywhere alone, incase I either physically seize up, with the hip deformity I have or the back pains, or just incase anything happens and I collapse, as that's a symptom I've had this past two years. It feels like it is a normal occurrence now though, so I'm not even thinking twice about asking my faithful little mama to accompany me, or a friend if on the odd occasion one arranges to visit me and doesn't mind the little walks me and my cute little fur baby go on around the block with frequent stops and sit down breaks.

Focusing on What I Can Do

Because the headaches are in relation to my sickle cell trait status, along with hypertension, I focus mainly on things I can do and take to reduce my blood pressure.
So freshly brewed Hibiscus flower teas, beetroot teas, plenty of water (I drink anywhere between 4 to 5 plus litres daily) with liquid chlorophyll to help oxygenation of my blood. I have recently been taking a supplement by a company called Max International, namely Enfuze ATP and Cellgevity, which I have found with consistent intake has increased my daily oxygen levels and energy levels. At first I didn't notice anything had changed, but I have since felt that since taking it, I began feeling more energetic than I used to be, I was super wiped out otherwise. If I didn't take it for a day or so, I would feel the difference. My mum also takes it too. My Aunty recommended it to me, due to my many physical problems following my major sickle cell trait crisis in twenty-twenty.

So I stuck to it. Now it's costly, but if you ask me if that cost is worth it? Then I would say one-hundred percent yes!!! If that is the only supplement I could afford to take, then I would say I would gladly just use that. I now feel I don't need to take it daily, I can manage on every other day. Saying this, my blood oxygen saturation levels still do drop drastically and suddenly, but not as frequently as they were doing before taking this miracle supplement. Do let me know if you would like to try it and I can connect you to her.

I also am focusing on increasing my daily exercise. Due to a hip deformity I now have, again as a result of the major crisis I had, I am walking more, as and when I can. I cannot always manage to do this, but I now have a reason to get out and about, as I have a little pug puppy. She is so high energy, but loves sleeping also, so we balance each other out. Due to my back struggling so much when I bend or sit or even stand, I can't go outdoors to walk her alone, so my mum or a friend accompanies me. In the event I can't manage to take my little one outdoors, well my mum or my brother do so. Since having her over five months now, she has drastically improved my life!

She has in fact been a type of medication for me. She's increased my joy and laughter levels and because I have another life, a little being I am responsible for, I can't not do something just because it hurts one day, although many a times I feel like it. She helps me to push past pain, not every pain, but the chronic pain, which makes me feel so unwell, I feel like I'd rather give up!!!

Acute Pain Onset

When the intensely acute pains come on, I have to manage with rest, hydration, heat pads or herbal baths, herbal rubs, plenty puppy cuddles and much sleep and medication intake religiously!

Yes my girl truly has given me a lease of life! I do hope though, that I can begin feeling like a person again, a capable person who aspires to fulfil every hope and dream that the mind can imagine!

Summer's Around the Corner

I plan to draw more as summertime is round the corner and maybe my hands won't be as stiff as they have been feeling in this cold weather and I hope to have plenty more massages. I find I need extremely painful treatments, as these are the only ones which reach that deep to release the deep rooted tension my aching, rock hard muscles and bones need - the blood flow and toxin release that massage promotes. So I recently went for a Thai Massage and wow, I cannot explain just how deep that was! It's the deepest I have ever had, or maybe it's perhaps because I am in such pain now I am super sensitive to touch. Because I've had Thai massages at that same place before, but then again, I've never been in this level of constant pain daily nor have my muscles been as tense as I find they are that even a mere morning stretch in bed ends up with neck spasms or calf cramps, which feel like my calves are been sliced in two and I scream aloud too! So therapies which promote wellbeing and definitely more massage therapy and spa days is what my plan is for this year to aid in pain relief and helping myself to cope better! I won't always be able to accomplish this due to being so sensitive to touch and when I do have flare ups or mild to moderate crisis pains, my skin cannot even bear to be touched, so this is wishful thinking, but I am aiming to make as many treatments happen as possible for myself.

Being Adaptable

I have also had to learn to adjust to my situation quickly, because it so suddenly can and does change, so I am learning to be more adaptable with myself both physically and mentally too. The challenge with this is that whenever I am physically limited without prior warning, it means that mentally my mood can also drop just as suddenly. I find that pain does that to a person, so I am learning to not beat myself up about it if I all of a sudden felt energetic and then lost the will to do anything and have to just go take a break or lay down and either sleep or watch a movie. I am now taking it all in my stride come what may on a day to day basis.

Music helps me big time too and I listen to a lot of Bemba (a Zambian dialect) music and Afrobeats, Gospel and Reggaeton too. I have gone off R&B as such for the time being, unless I'm really feeling a beat which is speaking to me, I need fast tunes right now, stuff that can get me motivated and mentally in the mood to fight back! I also love engaging with audiobooks. I find there's nothing more motivating than to listen to someone else who has been there (I mean down in the dumps or reached rock bottom - I haven't reached rock bottom, but when the pain is that excruciating and I'm sure many can relate, it can feel like you are literally sinking so low and mentally hitting rock bottom, so please excuse my over description) telling how they got from that to where they currently are now! It is extremely satisfying seeing that I'm not the only one and actually encourages me to look at just how far I've come.

I have often been told that I live in the past, by people who seem to not understand that I am an empath and a creative at nature, a writer and author of two books, which tells my story, yes I've had to record and journal and look back in order to be able to share those stories with the world (slight hint of sarcasm!) However, I totally disagree, I don't live in the past, rather I reflect on what I have learned from it! Without looking back, one cannot appreciate and see just how far they have come on their life's journey. I know exactly what obstacles have made me stronger and stretched my mental and emotional muscles past and waaaaay beyond what I even thought or imagined was ever capable of myself. So for those who will never understand, nor do I want them to, because again, this is my journey and I'm loving the good and even when I hate the bad, I'm appreciating and welcoming the lessons, which I'm sure I'll value and treasure even moreso as time goes by!

So yes, adaptability is my new found self-love gift and a much appreciated skill that I haven't quite mastered yet, but am including in my daily living!

Get In Touch!

If you are symptomatic as a sickle cell trait carrier and need someone to talk to or just want to find methods of coping with your chronic or acute pains, reach out - I'd love to hear from you. You can find the link to join our symptomatic Facebook support group on the get in touch page of this website too - we would love to welcome you to have a safe space to share your experiences/knowledge with others who are in the same place as you are/were.

Grab your copy of my book here too and find out what I did to help myself during the worst SCT crisis of my life! it may just inspire you to write yours!

Blessings and love!

Mwape xx