Sorry for the long post. Been away from the site for a while as It’s been a depressing 5 months. Often feel if someone above has it in for me or perhaps I sinned in a previous life.
In Oct 17 had nasty fall. Dislocated my shoulder and fractured my elbow. Also damaged my knee which still has numb areas so am hoping damaged nerves aren’t permanent as knee in last few weeks keeps trying to give out!
In Dec 17 Mum took a tumble down the stairs which was terrifying for me. Mum is agoraphobic and hasn’t been out in over 20 years so always wandered what would happen if needed hospital, dreaded it in fact. Anyway me & my Uncle convinced her to let us get medical assistance and ambulance took her to A&E. She had dislocated her hip.
Hospital did an operation and put a long nail in to sustain and as her bones were not strong they caused a fracture in 3 places. Instead of re fixing this they decided to let nature take its course which means up to 12 months for recovery and they can’t even say she’ll be back to how she was before.
While mum was in hospital they also found a brain tumour and she also leukaemia. As mum refused further testing we don’t know what strain she has.
They released her after 5 weeks, home Jan 18 and as I suspected she has refused all follow up appointments. She will not go back to the hospital. Thinks she’s afraid she’ll never get back out as took a lot for her to go in, in the first place.
Got her GP to visit, he is aware of her conditions and is monitoring.
Mum has carers 3 times a day but as she has no mobility it’s the times in-between that she feels it the most. She can’t get used to using a pad and not being able to do things. She a living upstairs for the foreseeable.
To top it off Devon County Council want Mum to contribute over £300 to her care and she barely has 2 coins to rub together. She gets basic pension and basic pension credit with attendance allowance. Unbeknownst to me they don’t take some bills into consideration.
This is legally their right so I’m being told. It meant that if she paid the council for her care then she would rapidly go into debt.
We had a big discussion and now have had to take the hard decision to make her bankrupt so DCC can get paid and mum can get the help she desperately needs.
I keep asking myself why me.
Im finding that I’m doing more and more to assist her when I’m not working my part time hours and the body is taking its toll.
I have Lupus with an overlap disease of Sjogren’s. I’ve always suffered with the usual aches and pains but one of my majors is fatigue which if possible is getting worse probably as I’m now overdoing it. I’m now needing to sleep more at odd moments in the day.
It’s hard to switch off when it’s someone you love and I have no idea how to juggle the 2 and take care of myself at the same time. I feel almost that I must come second to help Mum but on the other hand I need my strength to help in the first place. Viscous circle.
I’m on Hydroxychloroquine which doesn’t do much for me these days. Tried me on Aziathroprine but had such an adverse reaction to it, it had to be stopped. Now live off Hydroxychloroquine & Tramadol which I know isn’t the answer.
Thought about giving up work and becoming her carer but this doesn’t pay the bills.
Im not a social butterfly by any means but now I feel as if I have no life. My family are the type that have more words than actions and you literally have to beg to get assistance. Assistance that you then feel guilty for asking for.
Are any of you caring for a relative. How do you cope?
Any tips or advice as always gratefully received.
Take care, Debbie xx
Not sure what to do …
Despair 
Dash 🌈 is Dashing 5K up a hill dressed as Butterfly, because that's what you do on World Lupus Day!!
Long time 
Visitor that doesn't understand my ill.
