Hi all, I have recently been diagnosed with pernicious anemia and I’ve been really poorly mentally and physically. My cared for is completely dependant on me and unable to engage with any outside support. It just makes my role even more demanding and being ill too it’s even harder. I’m so tired. I have had 2 weeks of Vitamin B12 injections every other day and next steps is a follow up phone call appointment with the GP on Monday. I don’t feel much better after the injections, I don’t have time to be ill myself. Sorry, just needed to get that off my chest in a safe place. Thanks for reading.
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I have also been a carer when very poorly myself. I had major surgery, was widowed, then disabled after a car accident, all in a space of 2 years.
I was forced to make some hugely difficult decisions.
I looked at everything I did and asked myself
Can it be avoided completely?
Can it be reduced by doing things differently?
Can it be done by someone else?
My flowers borders were flattened, fruit trees removed, veg patch flattened to minimise the work needed in the garden.
I changed what I wore, so nothing needed ironing.
I told my disabled mum she must accept outside help, which she did, grudgingly!
I had to lower my standards in the home.
Whilst you say you have to do everything for your caree, you can still employ someone to help you with cooking and housework, shopping etc.
Are you both claiming all the benefits you are entitled to?
Do you have a planned “rest hour” during the day?
A comfortable recliner?
A dishwasher and tumble dryer?
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This sounds really very hard indeed. Advice from Bowling Bun sounds very ‚together‘ and organised. I wish I‘d been as clear sighted but everyone‘s situation is different.
I have suffered with Chronic Fatigue Syndrome / ME for a few years now which fortunately near my 94 yr old father who I care for, has a specialist unit to diagnose properly. So that has made a difference just being recognised and ‚seen‘ as being actually unwell and recognised as such rather than feeling like or being seen as a malingerer which can be incredibly isolating and alienating.
I really hope the dietary changes are being gone through with you along with the other stuff like injections. So often diet is not properly assessed by the NHS wonderful as it otherwise is or can be.
Is the cause genetic or something else?
I wish you all the very best in solidarity and care
Peter
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Thank you so much as always @bowlingbun Yes we are on the benefits we are entitled too and I am trying to rest but that’s not easy. I have a dishwasher and tumble dryer, yes. It’s very difficult to get someone in to help me due to my cared for’s mental health conditions as this affects them which then has a knock on affect on me. Not sure of the cause of the pernicious anemia. My Aunt has it though so could be genetic. I have another GP appt tomorrow to discuss it further. Hope you are keeping warm and well xxx
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Thank you so much @pharmsforest So sorry to read that. Am discussing next steps tomorrow with the GP, initially it was tablets and 3 monthly injections but I’m going to try and advocate for more injections as they were helping. My Aunt has pernicious anemia too so it could be genetic, her’s is treated with injections. You take good care and keep warm and well.
Marie
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Sorry to read you are not well but I know how you feel. I care for my husband who had a major stroke a year ago. My son has had major surgery recently for cancer and is starting 6 months of chemo soon. My daughter who does not live at home now but with her partner has autism and learning difficulties. She does however still need a lot of support and I manage all her paperwork and finances.
Sometimes I feel completely exhausted and never get any time to myself now. I must just add that I cared for my very elderly Mum for 14 years too. She passed away nearly 5 years ago. I feel like my life is slipping away. I have recently had a very painful arm and hand but I just have to carry on.
People keep telling me “look after yourself too.” But how do I do that?