01/09/2023
Hey SCT warrior family, a huge warm welcome to all our newest members. My apologies for not getting on here often at present, I have felt overwhelmed, extremely fatigued and in all that I have been trying to do especially following my dog having puppies, been really struggling to make sense of my life now as I know it!
I have grown so much spiritually this year, emotionally dealt with the traumas of the major crises and of the complications I now am living with stemming from being totally disabled in 2020.
I am left still recovering although much better from the stroke my strength not quite what it was physically before it happened but better than the last few years. I do find I am really tired often now because my tonsils still keep sitting on the back of my throat causing sleep apnoea and I still am experiencing chronic hip pain because I was disacharged from orthopaedics a couple months ago. The surgeon told me because of how much pain my back is in currently, if they did a hip surgery I may not get out of bed again, so pushing through chronic pain of my hip is what I must. I still envision myself running marathons or at least 5km again. Even if it’s in my mind!
It feels like my bone is mush though even a slight pressure on both hips is excruciating. My tiny pug just walking or lying on my hip hurts. Life is life though, we are so life goes on as usual.
This week I’ve had chronic headaches with the usual nausea, swollen feet although my legs haven’t been swollen, I’ve never had swollen feet before, I always had arm and hand swelling during SCT crises, (known as hand and foot syndrome otherwise known as dactylitis) accompanied with facial swelling. Never before feet swelling unless i had a sprained ankle. So this is new!
I am walking more now though although it is just to walk my dog around the block 3 x per day instead of just 2, so I guess that’s progress. I am finding more and more reasons to smile again, although I don’t feel the trauma has quite disappeared, I’m beginning to find many more reasons to laugh and be truly grateful for. It could be so much worse.
I know I’ve been silent, I’ve just been dealing with trying to fit some form of normal routine back into my daily life especially post puppies. Whilst I’ve not yet figured it all out, I find I am slowly getting there. I get up, bathe and dress and then after walking the dogs and spending some time nourishing my prayer life I study or get on with the rest of my day. Some days it includes going back to bed and others it includes chores, asking my mum for a massage if she is strong enough to help relieve some of the chronic body pain I have.
Recently I’ve been extremely emotional, but I feel a shift happening atmospherically and despite feeling alone, I know I’m not alone.
Grateful for the community and I’m so glad to read some of the messages posted within this safe space, as some of late have caused such hurt to resurface because of lack of the wider sickle cell community misunderstanding and harmfully stating “sickle cell trait is nothing compared to sickle cell disease” nobody is trying to compare though. When someone is suffering and looking for solace within a space in a similar type of space, the last thing needed is to feel belittled and small especially by a fellow warrior who chooses to stigmatise another according to the gross misconceptions of SCT out there. It shows gross ignorance and unintelligence and although it stung a bit, it just made me realise how grateful I am that I found all of you, who even if we don’t all suffer the same ways with our sickle cell trait, or sickle cell anaemia, we are willing to learn from and be there to support each other because that’s how we will grow and that is what is needed in order for the medical research to develop and for us the ones suffering to feel safe enough to speak out about this pain we’ve gone through in silence for far too long!
Just the inner most thoughts of a sickle cell warrior on her own healing journey, many may relate to!
Still awaiting my gynae procedure….3 years later. Life still hasn’t quite moved further forward fast enough, but it is moving….SLOWLY!!! I guess I’ll take any movement right now, keep dreaming of better days and remaining grateful that I’m still able to do so much more even if that ability looks different to what I envisioned for myself just a few years ago!
Sending blessings and love to everyone ❤️🙏🏽 and for anyone wanting to know more about my story and to watch some of us sharing our stories collectively here you go https://www.mwapemiller.com
Please share the info let’s join the sickle cell awareness for sickle cell awareness month as without there wouldn’t be
We will be hosting a panellist discussion this month, thank you for your patience!
Mwape Miller
