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Those Lazy, Hazy, Crazy Days of Summer by Nat King Cole

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”.

Lazy!!!!!!!!!

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.

Hazy

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.

Crazy

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).

A New Diagnosis

As always with Lupus a new challenge appears occasionally.

This time it is the addition of Cerebral/CNS (Central Nervous System) Lupus. We first thought it might have been Early onset dementia, but it is not, so hoorah for small mercies. Weird I know.

So something new to fight, dizziness, falling over, tremors, forgetting things – yeah it does sound like Dementia doesn’t it, but we went to a Gerontologist (by way of a Neurologist……….I just love typing things with ologist at the end) who tested Julie and confirmed she didn’t have dementia. This really put paid to my plan of convincing her she said I could buy that Harley I wanted.  Damn!

So now we wait for the new action plan, probably mind training and another medicine, she now hates me as I have been able to remove one of my Heart meds…..lol. We are going to be looking into complimentary medicine to see if there is anything that can help reduce the amount of prescribed meds she takes, we will be researching it thoroughly before changing anything, which is a must with Lupus. Prescribed meds seem to be a necessary evil with chronic illness but how far do we trust the health system, it would seem that all doctors are under the influence of the drug companies and appear to lose sight of what is really important……The Patient or in the case of Lupus…….The Warrior

See you on the flip side

Dealing with other peoples “Understanding” of your partners chronic illness.

Let’s admit it, Lupus is a bitch and unless you live 24hrs a day with Lupus, or live with a warrior dealing with the bitch, you have know idea what it is like, and you will never “understand” but thank you for trying.

If I had a dollar for everyone who says “you need to boost your immune system” or “get more exercise” I wouldn’t need to do Lotto. Friends and family (and even people you don’t  know) are always going to try and “help” you and give you lots of ideas because they love you. At first you say “oh that sounds great, unfortunately it is her immune system that is the source of all the problems and needs to be kept down” after the 3rd or 4th time it has now become “yeah thanks”.

The other thing they don’t see is the 25 days a month when you cannot get out of the bed, let alone the house. So when you are well enough to get out, they say how nice it is to see you, and that they don’t see you enough and you should get out more. Really! hello chronic illness warrior! doesn’t work like that.

My sister in law is a great support to us, at first her “understanding” and advice was flawed but over time she has become more knowledgeable and is now our goto person when we need help. She is a massage therapist, a vego (sorry, vegetarian) and loves to go power walking so she is at the other end of the spectrum from us, but she winds back when she is with us which is a great help, and she attends appointments whenever she can, even driving us up to the big city. Now that is the support a warrior needs.

I read a column by an Aussie lupus warrior – Kristana Page known as The Girl Who Cried Wolf – (amongst others) and one of the things she said in a recent column;

“Living with a chronic illness is an entirely different kind of beast. It’s such a cliché to say that you can’t possibly understand something until you experience it for yourself, but in the case of being chronically ill, I truly believe that. When you’re healthy, it’s easy to categorize the sick. But without knowing their struggles and what they go through on a weekly, daily or even hourly basis, you have no right to judge”

I couldn’t agree more, so until next time, keep slapping the bitch down.

A few good days

At last, a couple of good days for Julie, she has had a bit more energy and has been able to get out and about for a bit. This not only makes her feel better but it helps lift my spirits as well. We have also taken the step of buying a wheelchair so that on long days and visits to the hospital it will make life easier. Also long shopping trips (is there any other type when out with women!!) are easier for Julie as she doesn’t have the worry of having to disappoint anyone by coming home early, plus it gives me somewhere to dump the shopping.

We know that it will not last but hey who cares, take it while it lasts and be grateful.

As I mentioned in a previous blog we have been having an issue with one of our *ologists, well thanks to making a complaint (never be afraid, as the carer or patient, to question and complain with doctors and *ologists they are working for you, so make sure you get the best out of them) it seems to have given them the kick up the arse they needed. Tomorrow we are off to get a referral to a local Neurologist to see if there are any worries on that score, also with having to travel to Perth (3hrs away) it has now been put on our records that we only get the 11:30am appointment rather than the 08:20am appointment we originally had, that meant getting up at 03:30am to travel. So small wins but wins never the less. We are also going to get to talk to someone about recent MRI and blood results, which never seem to get discussed…..Hoorah!!

As the carer it is going to seem like a never ending battle, but being mentally strong and physically fit (my body is a temple……………..okay it is crumbling and sagging a bit!) helps. Also get as much help as you can, definitely talk to an occupational therapist about gadgets for around the house, we have got rails in the shower, the wheelchair, and am looking at getting them back to look at putting a side rail on or by the bed, so that Julie can settle herself before getting up and walking (oh and she has a couple of walking sticks if needed), don’t be proud, take what you can get.

Okay until next time – chin up, stiff upper lip and all that

Having Lupus and going to the Doctor or Specialist

This could turn into a rant, so be warned.

So what is it like going to the doctor or specialist, I would hazard a guess that most people feel okay when they leave, but when they start thinking about their appointment, doubts start to creep in. Did they answer all of your questions? did they give you time to ask all of your questions? is there an action plan for the future (be it short, medium or long term)? Did they really understand, or listen to what you were saying?

I could go on and on with these questions. For the everyday GP it must be hard, they have so much to learn and they end up being a “Jack of all trades, but a Master of none”, unless they go on to specialise. We expect so much from them and are often disappointed when they don’t come up to scratch. This is where the specialist comes in (someone who works as an “*ologist” in something or other). The appointment arrives and we think, “now we are going to get somewhere”………………………..computer says No! and our survey said “uh uuhh”! get the picture?

For lupusites, expecting the best is often a dream, unfortunately, we cannot see a “Lupusologist” as there is no such animal, we have to see 3 or more other *ologists who all have differing views on what treatment we should receive, oh and do they talk to each other……..not a chance, they are normally in totally differing locations.

Lupus is not a single item disease, that conforms to the norm, it is many diseases rolled together under the one umbrella, and it is very easy for doctors and *ologists to say “oh it is just the lupus, keep taking the meds and see me in 3 months (or more)”

Lupus sufferers and their carers often fall into the “too hard” basket, and are shuffled around from pillar to post as no-one wants to be lumbered with them. A typical example is my wife, she may have an issue that requires an ambulance and a trip to emergency at the local district hospital, they are usually pretty good but sometimes it is too hard for them, so we get sent to the regional hospital. Now I am sure this hospital has an alert against our name, as the usual response is a sign of the cross and a transfer to a large hospital in the city, which is 3 hours away. So as a carer I now have to look forward to 11 hour days getting up to the city and back, oh and did I mention (get the violins out) I am waiting on a hip replacement and am in pain a lot of the time, but I love my wolf (oops sorry sweetheart, I meant wife) and will put up with this to see her.

So the next question is….do they really care…….No, I sometimes think that the Hippocratic oath went out the window with the invention of technology, social media and hospital administrators. I was in the waiting room to see my GP the other day and could hear the receptionists bemoaning the fact that on one day they had a large amount of patients and all the doctors met their targets, yet the next day they had half as many but failed to meet their targets. They simply could not understand this…….hey that is because you are receptionists and the first day could have been simple – take 2 aspirin and see me if it gets worse –  whereas the next day could have been complex appointments requiring a bit of thought.

I think I better stop there, see you soon

Looking to the future

Well so what prompted that title, every couple of weeks we end up travelling 3 hours up to the big smoke for one appointment or another. Now normally that would not be a problem, but lately it has. 3hrs to the city, sit around for another couple of hours then 3hrs back normally an easy day out, but it has been taking its toll lately, so we have decided that to save both of us we are going to do more overnight stays to freshen up before coming home.

We are lucky here in Western Australia as there is a good travel assistance programme that enables you to put in a mileage claim, and get some money back for parking and accommodation, so we are taking advantage of that. Sometimes I used get a little proud and feel that it is not necessary to take handouts from the government, but now that our circumstances have changed I have no issue with it.

The other thing we are doing is buying a wheelchair for Julie. It is not an everyday requirement but, it has made things easier when having a big day out shopping or going to an event, it would have been very handy when we had a week up in the city as some of the things we wanted to do would have resulted in Julie being dogged tired for the rest of the week, I am getting quite handy pushing a wheelchair now, even put together some moves dancing around Target, not that Julie appreciated it!

So we are now looking to the future and planning ahead, as I have more time on my hands I want to look at raising awareness of Lupus in Regional Western Australia, starting in the South West, where we live.

We now have a couple of walking sticks for Julie, and I have amassed a little first aid station with Blood Pressure monitor, Thermometer, Blood Sugar Level monitor, Pulse Oximeter, a torch for checking her pupils and a notebook to give to the ambulance my observations, if we need to call one.

The other great thing I have done is put together a care plan file, containing all the relevant information on Julie and her lupus history. As a carer it is harder and harder to remember everything so having this file is a great help. It is just a word document with a number of sections, the first is Julies details including her Medicare number and Disability pension details, her emergency (Me) and alternate emergency contacts (Her sister). Next comes general information about her condition, such as any diagnosis (SLE, Fibromyalgia etc), her allergies, a brief medical history and her medications. I then go on to listing her medical care team including her GP and any specialists. Next comes any emergency hospital visits, then a timeline of her medical procedures from a simple biopsy to major treatments she has received. Finally some general information, such as how we confirmed her allergy to all Penicillin based medications and lupus medications she cannot take and why. This file now goes with us to any medical appointment.

Despair and Frustration

WARNING: This is one of those posts that may bring about tears and whilst I have some writing this, I know that there will be more to come. So why write it I hear you say, well I think it is important for carers to realise that they are not alone when they feel this way and that by bottling these feelings up, it will only make things worse. A column that I subscribe to, written by Kellie Mcrae (The Hurricane in Heels), set me off on my blog, she suggested doing one but keeping it private as it can be therapeutic, I thought that was a great idea, but then I looked for other carer blogs and couldn’t find any, so decided to make it public.

So here we go, hankies at the ready;

Oh yeah the title says it all, carers beware, this will strike at anytime and there is nothing you can do about it, you love the person you care for and you want to be strong for them 365 days a year, well it ain’t gonna happen.

You are going to have off days and that is okay, with Lupus its effects are far reaching, the sufferer, the carer, the family, the friends and on and on and on.

So, you may ask, what bought on this “boohoo poor me moment”, well as the title suggests, I am frustrated and despair that I cannot help my wife. That I don’t have the skills necessary to help her get beyond where she is at the moment.

As a carer, you are going to hear things like, “oh I am going to do such and such a thing today”, only to find that it never happens and this will feel like a daily occurrence, and whilst you know it is the Lupus preventing your partner from progressing, you start to doubt it, you start to think “is it too easy to just say it is the lupus”, “am I being too harsh”, these feelings are natural, remember Lupus is a bitch!

There will be glimmers of hope, when you are told, “I am going to make the effort to turn my life around” and it is said with determination, but after a while of hearing the same old thing and nothing has changed you get to the stage where you just nod and smile and try to sound positive because, despite everything else, you still LOVE them.

So what do I have to look forward to you may ask yourself, the answer is simple……………..

Tomorrow is a new day and you never know what it will bring, so embrace each day as it comes, and keep loving the wolf in your home.