Registered: 1480891313 Posts: 3
My mum has lupus. She has been sick since I was very little and it took them so long to diagnose that it damaged her kidneys and she is now on dialysis. It has had a big impact on me. My studies suffered and I was experiencing panic attacks almost every day.
I am writing this to try to tell people that it's ok to get help and that sometimes you need it. When I was in my last year of high school my anxiety got really bad. I told my mum and she blamed herself so I kind of hid it away again. I decided it wasn't working so I went to the doctors and got an appointment with a counsellor. Then I told my mum what was happening. Still a really difficult and emotional thing but it needed to be done. My most major problem was there was only one person who could take me on and he was an hr away and dealt mostly with anger management. It sucked and I hated it. It wasn't until I went to University and was suffering so bad I couldn't make it to class that I looked up the people employed by the campus. They dealt with a lot of anxiety cases and I got to meet the person before I signed on with him. He helped so much and explained why it happened and what it would take to stop. Then he gave me goals, like making it down for breakfast with people, and coping exercises, like counting as I breathe. I am proud to say that I am not on medication and I have had one major panic attack in a year. So please, if you are struggling with a loved ones illness, you are not alone and there are people to help you. Talking about it can be hard but the end result will change your life. I now talk about what it was like in the past and am surprised to find so very many people have similar stories and experiences. So just know you are not alone and the horrible feeling can be beaten. They don't last forever.
Registered: 1480292470 Posts: 13
Thanks Motty3. I just found your post, having come to this topic to post something myself. I am thankful to read about your self-care and what you are doing for it. In 2016 my wife moved to a deeper level of symptoms of SLE, I managed to get off Xanax and Prozac, and we recognized that I have fully moved into the role of caregiver (carer).
One of the most difficult things for me seems to be a dilemma between doing too much for my wife and letting her do too much. It is a balance very hard to achieve, and then not really being sure I am in balance at any moment.
Another has to do with effects on mood of auto-immune system problems. My spouse is nowhere near as volatile as someone with borderline personality disorder or bi-polar disease, but there is enough unpredictability that again I can feel off-balance.
I am working on my responses and behavior, and I do believe by the Grace of God I am getting better at both awareness and behavior. I welcome comments from anyone, please.
Registered: 1480891313 Posts: 3
The moods can get bad. Especially if a doctor lowers a med like prednisolone. My mum has also had some depression because of how hard it all is on her which was very worrying. Everyone is different so I can't really give you any help with balancing how much help you give but I hope everything goes well and that you keep fighting too.
Registered: 1495776630 Posts: 1
Hi Guys, my wife has had Lupus for 30 years and I am now her fulltime carer, it can be hard, as you said clgrover, to find that fine line between helping and controlling, also what you consider helping could seem controlling by your wife. The best bit of advice I can give is talk. Talk to your wife about how she is feeling each day, some days it will mean you have to do everything and others she will feel she can do something, even if it is make a cup of tea, this can be a win for her.
The most important things for a carer is to have a great support network of friends and family, and a great medical team. The friends and family may be a little difficult as they don't live with Lupus and whilst they think they understand there will still be times when they don't (one of the biggies is the fatigue), but they will try their best, so look for assistance with these sort of forums, I also have just started a blog in which I let things out so that other carers can see that what they are feeling is okay. The blog is primarily for carers and is called Caring for the Wolf in your Home, on Wordpress https://caringforthewolfinyourhome.wordpress.com/ The other thing I mentioned is a great medical team, this can also be difficult as you will have your own family doctor and it is hard as they have to cram in so much that they cannot specialise on one illness, so we get referred to *ologists, and there can be 2 or 3 of them depending on the progression of the lupus. One thing I will say is don't be afraid of making sure they give the best service, we have sacked doctors and specialists as they have not been up to scratch and we now have a very good team. Lupus is a b*&%h and there are so many medications prescribed with unpleasant side effects that it seems they could not be helping, especially as you then have to have other meds to control the side effects of the first ones, there will come a time when the person you are supporting will say "to hell with it, I cannot possibly need all of these" and will look at reducing of stopping them.............do not let this happen, they will crash and burn, as I know all too well. Complimentary therapies are also good, we are going to be going to hydrotherapy, and the use of accupunture and massage is another that can be beneficial. Knowledge is the key, read and read and read, there is so much out there. Good luck to both of you