Firstly, throw away the dictionary definition of “Normal” and redefine it by your new standards of normal, according to the world of Lupus.
There are many things that spring to mind when thinking about this question, and that is good, but one thing you have to remember is not to become a control freak, it is a very easy trap to fall into. Take it from someone who knows.
Your role will develop over time, for newly diagnosed lupines it may be just a taxi service to get them to appointments, maybe you will have to do a bit more carrying when shopping. It will then move onto you doing most things for them, but that will be way down the line. So the next thing to remember is – Be Flexible
Learn about lupus, sometimes it might feel easier to just go along for the ride and do whatever the GP or specialists say, trust me it is not that simple as they say – Knowledge is power.
As Julie and I have gathered more knowledge it has enabled us to have a more meaningful relationship with her medical visits, we have been able to question them on some decisions, we have been able to talk about medication regimes, I have even been able to look at her symptoms and query if something else could be happening. Recently I have suspected Cerebral and CNS (Central Nervous System) Lupus occurring, this was only possible by keeping my eyes and ears open. I brought this up with the medical team and they are now investigating that possibility.
Now we get onto the subject of “feelings”……………no don’t run off and put the kettle on, or stick your head in the sand and think it will go away…………it wont. A lupus sufferer is going to go through a whole range of emotions such as sadness, tiredness, hopelessness, vulnerable and this is what you need to guard yourself against so show empathy with them (not sympathy that is totally different) and be emotionally considerate of them.
A good example of this is yesterday Julie was having a “lupie” day where all she could do was sleep, now this could be frustrating for some (and used to be for me), but you have to take this in your stride, she could not help it, it is just the lupus. So I got on with other things, we have an agreement that she can sleep in 2 hour slots during the day if she needs to on the bad days. So yesterday from 24 hours she was asleep for approximately 18 of them. This is not an issue it is a fact of life.
The other important thing is the big C (no I don’t meant the clap) or Communication. This has to be ongoing and two way. Whilst the ideal would be for you the carer to be positive 24/7 the reality is this is impossible. So when you are down or tired then let your partner know, they know you have feelings too, and on the other hand be ready to lend and ear (and a shoulder) to them. Maybe talk about how you are feeling to a relative or close friend, don’t bottle things up (it is like holding all your farts in, one day your head will just explode!) it will only make things worse.
Keep fit and healthy, it is no good being a carer who ends up being cared for. So look into your lifestyle and see what changes you can make. I read somewhere that it can take 6 weeks to get into a habit, so do it gradually don’t try and change your life in 1 day or week.