[Douglas]

Dear Fellow victims of the Wolf,
It has been several years now since my health problems were diagnosed as being SLE, and in that time much has happened. Although I am still on very conservative medication in part, I am sure, because I had to take early retirement an so can rest when needed, I seem to have learned many things about Lupus. Little of this is original but some insights may be useful to others.

First, from the doctor and pain-specialist nurse.
1. “You are not going to get better.” This was a tough one and not 100% true as I know from having partial remissions. It is important for me to accept this so that I can enjoy each moment. I have Lupus; some five minutes are better than other five minutes; it is idiotic to expect to ever be free of an incurable disease and, contrary to what some believe, Lupus is a fatal disease. I hope it does not kill me until I am 124 years old.
2. “It is palliative care.” When I reminded a doctor recently that palliative care really means “keep the patient comfortable till he’s dead” he was a little taken aback by my bluntness but had to agree.
3. “It is a matter of quality of life.” My quality of life may seem wonderful to some and so terribly restricted to others that euthanasia might spring to mind. The truth is that as long as I believe I have a good life things are fine.
4. “It takes more medication to push pain down than it does to keep it down.” Pain is best avoided completely. Take enough medication to keep the wolf confined; if the wolf escapes it can find other wolves and then it is much more work to get them back in the kennel.
5. “Take the *&^% pills!” My attempts to cut back on the pills are simply neurotic and self-destructive.

Now, from my wife.
6. “Time for your nap.” Rest and medication are both necessary; sometimes I have a sick need to pretend I am normal or even Superman. I am not.
7. “You are much easier to live with when you take the pills.” “Did you take the pills?” “Is it time for a pill?” When I am too dense to remember to take the pills that are part of giving me an acceptable quality of life it is good to have reminders.

And a few of my thoughts and reminders to myself.
8. Some days it just seems that my pain threshold is down. On those days if a fly lands on my skin it can feel like a knife.
9. If some relative stranger says, “How are you?” I may answer “Vertical”. If a friend asks I may answer, “Fine, this five minutes.” These oddball answers keep me from lying or, equally bad, from becoming a bore.
10. There are other ways of dealing with Lupus, the wolf that never sleeps, but acceptance of reality works best for me.

Douglas+

 

[karen.w.]

wow douglas I couldn't agree more!!! you have summed up lupus so well!

If a friend asks I may answer, “Fine, this five minutes.” These oddball answers keep me from lying or, equally bad, from becoming a bore.

...so very true douglas!!..I think I will start using your reply too!

'acceptance of reality'...I like that one too,yes it's does certainly help with this disease!

Thank you for your post douglas,I enjoyed reading it,in a sad way if that makes sense?I like your honesty
take care..karen x

 

[Marshmellow]

you have a great way with words!!!
Rachel

 

[Maia]

Wow, your doctors have been pretty grim with you compared to my doctors!
They really didn't talk about prognosis at all though, other than giving me a brochure to read, they may have told me there was no cure. Can't remember at this point. Although, the overall vibe I got was much more hopeful that what you've gotten... so my experience is a little different than yours!

 

[AmandaB]

Haa haa haa - thank you Douglas, you made me chuckle!

The bit from your wife is so much like my boyfriend!!! He'll even sit and watch me take my pills and then ask my half an hour later if I need to take my pills!!!

I learnt the hard way about acceptance although I do like to push to test the waters every now and then!

AmandaB

 

[willow]

"2. “It is palliative care.” When I reminded a doctor recently that palliative care really means “keep the patient comfortable till he’s dead” he was a little taken aback by my bluntness but had to agree. "
Douglas+

so true douglas, when my doctor said that to me it was a huge slap in the face, but at the same time, it's a very strong statement to make when i find people are underestimating my illness, like my mother in law.

 

[LupusCat50]

Douglas,

I can really appreciate your observations about the Wolf. Having been finally dx in 2004, I've had to learn some hard lessons about myself, my health and my ability to cope. Your comments so described my findings in the past 3 years.

As to what to say when people ask how I am--if they are friends I'll say OK right now; if they are just people in the hall I'll say I'm making it. Some days it's "I'm hanging on".

I still work 4 days a week and have a very stressful job. My current dilemna is whether to continue working or attempt a disability retirement. I just feel that if I retire, I'll be admitting to myself that the Wolf has won and I'm just not ready to do that yet.

So, in the meantime, right now I'm not too good; but, I'm confident it will get worse; however, it just might surprise me and be a better day tomorrow. Either way, as long as I wake up in the morning, I'm going to have a "good" day.

 

[flutterbye]

Hi there,

Probably I am coming from an entirely different angle, and whilst I think I can appreciate your feelings and experience and also agree with some aspects of your post, I also wanted to offer some hope and I guess another perspective, particularly I guess if someone if reading this who has just been diagnosed, I guess the 'you are not going to get better' is the one I would take issue with, as in you are not going to be cured I would agree with of course, but there is hope for improvement, whether spontaneous periods of remission or improvement from medication, this comes from someone being extremely poorly, to being working again and having a greatly improved life generally, I ain't cured by any means, but things have got better beyond what my wildest dreams could have been.

I agree as well about accepting reality, but think that pushing the boundaries helps, saying that you need a good team who will help to push those boundaries, to improve that quality of life that we have, in whatever way, and that is medical team and family, and ourselves.

I don't want to be contaversial so will shut up other than saying that as far as talking with others goes, I find now that I stop and put it into context for me, so if someone asks and I am having a good day I say I am great, if its rubbish I say so, no one will understand the daily struggle so it would be pointless to have an expectation that they would, why should they after all I figure it's not in their context.:hehe:

oh probably for a whole variety of reasons the idea of being classed as a 'victim' I find 'difficult'

 

[sam101360]

Doug:

Thanks for this...Its funny, I, no matter how YUKKY I felt, I kept hoping for remission, a better day, all of that. My old Rhumy was always so positive, playing down the "chronic" in this illness.

I have a new Rhumy, pallative care and improved quality of life are his goals, what a difference!

He gave my hubby and I a real wake up call in our last visit.."There is no such thing as remission...all you can hope to achieve is a good quality of life and a slowing of the disease progression" is exactally what he told us. He said "you have a chroniclly fatal disease, it may take decades, but it is fatal".

Hubby was very upset and cried for days everytime he thought about it, but it also changed the way he looks at life for both of us, and he is much more settled with my illness, no more frantic searching for a cure...but still holding hope that they will find one.

You post let me know I am not alone in how I cope...Good today or I've been better, are my common responses...to family and friends...we just don't go there, unless I need to talk!

Thanks - Stephanie

 

[Douglas]

Thank *you*, Stephanie. The wonderful searing *truth* of the statements
>"There is no such thing as remission...all you can hope to achieve is a good quality of life and a slowing of the disease progression" is exactally what he told us. He said "you have a chroniclly fatal disease, it may take decades, but it is fatal" makes it so much easier to live with the wolf. Please thank your doctor for me.
Douglas+