Blog

The emotional side of caring for a Lupus warrior

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.

“I really know what you mean, I get 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.

The World Moves on.

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

A Carer being dragged down by Lupus

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.

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.