So I have been away for a while due to issues with my warriors health. She was getting dressed a week ago (should have been sat down) and got her toe caught in her knickers. This resulted in her face planting, whilst wearing glasses, I heard a thud and then her cry out, I ran into the bedroom and she was face down on the floor. First thing I did was check her head and found blood, shit I thought this is going to be a hospital trip. Luckily it was only a small cut caused when her glasses fell off. We managed to get her upright again and saw the bruises already appearing on her face and body.
I checked her over and she seemed to be okay, so we left off going to the hospital straight away. I wish I had made her go when I thought of it.
Had to take her in to hospital, after a visit to our GP, when she wasn’t getting better and had a lot of chest pain. So had an urgent head x-ray and CT of her scapula and upper thoracic area. No call from the GP so all must be okay.
The point of this is if you feel you should go to Hospital then go, I used to be an Ambulance Volunteer and should have known better, it lead to over a week of worry for me which could have been avoided if we had gone.
She is also having a hard time coming to terms with the fact that she may not be able to sew any longer, due to the Cerebral and CNS complications, she loves sewing and this has really brought her down. We have been talking about her getting back into knitting and crocheting for charity causes, which I think will help.
So where was the “smooth” in all of that I hear you ask, well we still managed to get out for a little bit and saw some whales in one of the local bays.
Me, I have been starting a new hobby of restoring Antique and Vintage sewing machines to fill my time, which I am loving hopefully I get raise a bit of cash along the way, although it will be nice to see a collection grow.
Hospital appointments, doctors appointments, hair appointments, blood test appointments, I guess you get the picture.
So the last couple of weeks have been quite busy, but some good news is that Julie’s recent eye tests came back good, no general issues, no macular issues and no issues from the field test. So that is that for another year woohoo!!
Now got a great Rheumatologist for her, who has diagnosed her with more Antiphosphilipid Syndrome than SLE. So we are now trying to wean her off some of her medications, which has pleased my warrior immensely. Now waiting for a Neurologist appointment (yep she has finally gone mad….lol), to look into cerebral/central nervous system issues. Will have to bring up a piece I have just read where a medicine called Rituximab seems to have had some beneficial effects for this issue. That is the other thing a carer needs to be on top of, looking at available resources for information that may assist their warrior in having a better standard of care.
So what has this meant for me as a carer, lots of mileage to an from appointments, lots of “Admin bitch” time coordinating all of these appointments, which in itself can be a challenge. So now we have a bit of a quiet period (or we did until I used the “Q” word), to enable us to catch up on some things.
Julie is looking to make a doona (quilt for non Aussies) based on Lupus butterflies to auction for Lupus Awareness month, which in Oz is next month. I am looking to do some awareness raising by having a stall in our local shopping centre with banners, leaflets etc. Hopefully Julie will be able to come so that people can talk to a Warrior.
I am looking around the house to find stuff we don’t really need and putting them up on local Facebook sale sites for donations to the Lupus Foundation of Western Australia. (note to self, check with Julie before selling anything)
So emotions, back when Julie and I met these were not top of my list. Being in the British Army for 15 years knocked all emotions out of me, we compartmentalised everything and emotions where locked away in a box at the back never to see the light of day.
I think all carers need to have, and not be afraid to show, a range of emotions…..except anger. I have to admit that if Julie was in the same situation now as when we met it would have been hard for us, Julie is (and always has been) a deeply emotional and loving person and I was a lump of rock when it came to communication and emotion.
Some would say that caring for a Lupus Warrior is like riding a roller coaster, well I can understand that with all it’s ups and downs, twists and turns, but a roller coaster is easy to manage. Lupus goes way past that and that is why we need emotions.
Unless you allow yourself to show emotion how is your warrior going to know how you are feeling. Some may say “but I have to be strong every day to care for them”, not true. You are allowed to have down days, tired days and frustrated days, and when you do tell your warrior and they will do their best to look after you.
So if, like I used to be, you have trouble with your emotions and feel that showing them will make you less of a man, GROW SOME BALLS, emotions are part of who we are they are what makes us human and not rocks. The other thing is don’t try to change over night, it is better to take baby steps as it will come as a shock to your warrior that you are showing these strange things. They will be wandering what the aliens did with their carer. Don’t worry it will come eventually and you will have a better relationship because of it.
So how many times have you heard this, whilst it would be nice if it were true, it ain’t. No-one can truly understand what it is like to live with a chronic illness unless you have one or care for someone who has. If they do really understand, grab tight hold and never let them go, they are some of the most useful friends to have around you, both as a warrior and as a carer.
The problem is that it is not just friends that say this, but family as well. Yet they are all the same, plenty of well meaning advice that really is not relevant to chronic illness. Statement in question is “you need to build up your immune system” really!! it is the immune system that is faulty and causing all the problems. Another one is, “get out and enjoy yourself” for a lupus warrior this equates to getting up and having your breakfast waiting for you. Exercise is the classic one, having a shower without falling or being in pain is the only exercise that can be done on most days.
So as a carer it might seem that you are fighting a losing battle most of the time, but then you will find someone who understands and will become close friends. They wont even mind when your warrior RSVPs to invites with “Maybe” instead of “Yes” or “No” because they will get it. For all the others there is MasterCard…………….sorry couldn’t resist, for all of the others just nod and smile.
So been quiet for a while, nearly into my 3rd week of recovery from my hip operation and all is going pretty well.
I did a blog a while ago but have not published it as it was more of a vent than anything and wasn’t sure that it would be well received, however, it made me feel good.
So for all carers out there, to keep yourselves sane, maybe start a journal of how you are feeling, doesn’t have to be every day, or even a minor thesis, just a line is good enough e.g. feeling shit today.
The other important thing is communication, talk to your partner about your feelings, just because you are the carer doesn’t mean you have to be strong every day for the rest of your life. Shit happens and it is better to talk about it otherwise it will drive you crazy.
The other thing is family (and some friends), it is not always going to work when one family member has a chronic illness, not everyone is going to understand why your warrior is spending so much time in bed, cancels appointments again and again, cannot get interested in hobbies etc. This is Lupus and it happens, you just need to keep talking about it and hope that it eventually sinks in as to what Lupus can do to your warrior. Also whatever happens always be there for them, you are a team and there is no I in team, as they say.
I say this again and again, communication, communication, communication, there was a British TV ad for British Telecom many years ago that is true today “It’s good to talk”.
Until the next time Sayonara
Yep it has hit me hard recently, both of us contracted a stomach bug and of course it hit Julie more than me. The hardest thing has been watching Julie not seem to get any better for over a week now. As a consequence of the bug and the normal Lupus fatigue she has been in bed most of the time.
Last night it hit me hard and I was really down about everything, also I am in hospital on Monday having a full hip replacement, so am going to be out of action for a while. Luckily I will only be away for a couple of days, and we have some lovely friends who will keep an eye on Julie for me, but of course this caused more pressure, because they have no idea really how bad Julie can be affected by things and I worry about how it will affect them. I need more shoulders to hold things up with, taking on the worries of the world is hard work.
Today could be a turning point though as she seems better, baby steps though don’t want to put her back where she was a couple of days ago.
So Carers, this is what can happen to you, so you have to understand that it is quite natural to feel bad or down, talk to your loved one about it so that they can understand why you might be quieter than normal. It does not make you a bad person and it will go, so stick with it.
This song could have been written for Lupus warriors, although the title would have to be extended to “Those Lazy, Hazy, Crazy Days of Spring, Summer, Autumn, and Winter”.
Admittedly “Lazy” is not a good word to describe what warriors go through, as fatigue is one of those things that others (non warriors) find hard to understand but, “Those fatiguey, hazy, crazy days of summer” doesn’t have the same ring . Warriors are not lazy they are dog tired, and it is not because they have run a marathon it is just that they feel like they have run a marathon. The tablet or ipad becomes their new best friend as that is the extent of the exercise they can manage. The hard thing is convincing them that it is not a problem for the carer, as we understand. The response is normally “are you sure” and this is a response brought about by the “others” who don’t understand.
Oh yeah don’t forget the hazy days when the fog comes in and their thoughts come out 20 minutes after they first thought of them. Or they constantly ask “what are we supposed to be doing today?” I have got a good method going with Julie, e.g. if she is trying to think of a program on the TV but it will not come to her, I say “what is it about” and the same for a person “what do they do?”. It is good to find ways to overcome these issues and help out. The other thing that is a huge No No is “I have already told you that” or “we talked about this earlier”, that is just asking for trouble and you may want to duck to avoid the heavy object coming your way.
Did I mention that warriors are crazy people. Yep, on the good day (note I said day and not days) they decide that everything they couldn’t do over the previous days or weeks has to be caught up with on the one good day. This is all well and good in the morning, but by lunch time the body is saying “Woah there girl, what are you doing? you do realise you have a chronic illness don’t you, and that tomorrow you are going to be really sorry”, but do they listen, Nope, they go on and on and on. Guess what, next day we are back to the beginning.
Such is the life of the warrior and their carer (or bitch as I sometimes joke).