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When experiencing a crisis, as a carer it can be quite difficult to understand the level of pain that is being experienced. Also, the level of care needed varies among different people. Some people want to be left alone while others want someone to be there with them.
Do you have any advice for carers on things they can do or say to help you during a crisis?
yes sure @Michael my advice to carers (just give me my morphine dosage and i will be fine) hehehehehe LOL
Personally, I like to have someone with me, encouraging me, showing understanding – although only someone with sickle cell can truly understand. Also, when in hospital, I can be reluctant asking for pain meds – you guys know what they think about us – so carers can encourage and advocate that we get the necessary med dosages.
I hope @viviane hospitals follow procedures which should be registered in our profiles mentioned that we are SCD patients so we need special care and our admission would be more easy, at least if your crisis is high you have no choice you need an opioid dosage or you will get heart attack like what happened to me once because I had a high level of pain in that day my heart start to corrupt the pulses, last time before my admission I stay awake all night from 6pm until 7am morning just because they didn’t gave me the correct dosage of morphine, I hope this procedures come direct from ministry of health and attached to our profiles in hospitals.
😮 I am so sorry you had to go through this. I hope it never happens again. It is difficult having a disease that many people – especially caregivers – don’t quite understand. Hopefully, in time, with education our care delivery will be better.
😮 I am so sorry you had to go through this. I hope it never happens again. It is difficult having a disease that many people – especially caregivers – don’t quite understand. Hopefully, in time, with education our care delivery will be better.
No problem @viviane its ok I totally understand that some of people can’t feel your pain but as you said hope all go well in the future.
I agree @virus, if I need medication, please do what you can to help me get it, don’t be another obstacle!
@viviane141 I think having an advocate is priceless, especially during the times when you’re not strong enough to fight for yourself.
I also feel very touched when I see people advocating on my behalf, even when they don’t completely understand what it is we go through. The fact that they try really warms my heart.
@viviane141 @Tito
My adult son appears to completely understand how I care for myself at all times when I am pain free. He reminds me to stay hydrated or to stay warm or don’t go there because there are too many people (because of the spread of Covid). I am thankful that I have not had a pain crisis in a while now because of Apheresis. But I have had to be a very strong self-advocate towards the RNs who do not want to follow my hematologist’s recommendations. That has been a first for me in that setting. I have experienced the need to be strong will in the emergency department when I’ve gone there to end a pain crisis. Sometimes there is a lack of urgency to stop the pain. A pain crisis is life threatening in addition to the unbearable pain and suffering.
I think support varies from person to person for example my dad always tells me ur mind is strong and u would defeat it and to this day I think that’s one of the things that help me it help me keep a positive mentality especially when I feel like blehhhh… and my husband who don’t like to leave my bedside when I’m down. I have been trying to be in some sort of control with it and I haven’t had the types of flare ups as I did younger and I mean I get the pain I try to avoid the cold or the extreme heat I honestly would say that trace minerals drips in my water really makes a difference, and massages and a lot of sleep
It’s good that @jordangirl & @enorris have things that work for you and people that can support when needed. I think when I am going through crisis what helps is when people already understand what I need, it saves me having to explain and it allows me to focus on getting better as quickly as possible.
@jordangirl what are mineral drips and what do they do? Could you please provide a link so we could find out more.
It’s good that @jordangirl & @enorris have things that work for you and people that can support when needed. I think when I am going through crisis what helps is when people already understand what I need, it saves me having to explain and it allows me to focus on getting better as quickly as possible.
@jordangirl what are mineral drips and what do they do? Could you please provide a link so we could find out more.
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