What is it like, mentally, to be a carer for a lupus sufferer

Well I can tell you from experience it is bloody hard, especially when things get tough during a flare up. Some might find this next comment harsh, but read on. The hardest thing to do is to stop yourself being brought down by them, you have to stay strong, but it doesn’t mean you have to hide your emotions. Tell them you are finding it hard, they may be suffering but they will still have time for you as well. Lupus sufferers have an inner core of toughness, even though they may not know it sometimes, when something affects their partner, straight away they will be there.

When I had my heart attack, did Julie think OMG what am I going to do, I am suffering so much……No she didn’t, quick as a flash she was on the phone to the Ambo’s (funny thing is I am an ambo too), she stayed calm throughout and was a great support. The other night, whilst in our holiday accommodation I was having a nightmare and making upsetting noises, Julie was extremely tired when she went to bed, but she was straight out of bed calming me down, even though I did not wake up.

So whilst it is hard caring for them, they are still caring for you.

You have to remember it is okay to have a “what about me!” moment, it will happen to us all at sometime. You have a lot to do being a carer and sometimes it is easy for you to forget that you need to look after yourself as well, both physically and mentally.

As things progress  your partner is going to develop other symptoms (it is the nature of the beast), so don’t get complacent, always try and think ahead. It will start out as maybe a rash, fatigue and some sore joints, then the Fibromyalgia kicks in and that is a whole different ball game. There will likely be liver and other organ issues come to light over time, which again changes the goal posts, more tablets and side effects to overcome until it quietens down again…..this only means the Wolf has gone into hibernation, like Arnie it will  be back.

Lately it has become apparent that Julie may have Cerebral and CNS (Central Nervous System) complications as well, this is when the “admin bitch” (see previous blog – Caring as a bloke brings more respect for the Housewife) in you comes out, scheduling new appointments, making sure there are no double bookings. As you are the one who will have to remember, get a good diary/planner it will become your best friend.

So mental toughness in a carer is a necessity, keep your mind active, get a project/hobby to keep you busy. If you like lists, make them, post them around the house if necessary to remind you of where you are and what is next. The best advice is to talk about how you are feeling, if not to your partner a friend or even your doctor but talk to someone or you will go mad.

Good Luck!


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