The darker side of lupus #11

[amandalilley]

Is when through the munipulation of the illness known as Lupus you find yourself hiding, for sometimes days on end, from your family, friends and the world in general.

I sometimes feel that I should admit to bouts of 'the darkness' (I dont use the d word), but I become afraid that after 20 plus years of lupus, if I let it take hold, I will never be able to come back.

Looking out onto the most amazing view from my living room, I have a demon and an angel on either side of me.......go out, stay in, be afraid, dont be afriad, they dont understand, of course they understand, I smell, you dont, you look beautiful, you look like a monster......etc etc

The battle between your head and your body, when dealing with this illness, is like being on the ocean, when the swell is never 0, it is always choppy and can become a tsunami on the spin of a coin.

But it doesnt get easier, it gets more and more difficult to balace your logic against the power of a disease that can control every aspect of both you brain and body.

Constant pain is the destroyer of souls.

Lupus is the stalker from hell.

The darkness decends without warning, how you deal with it defines your next min, hour, day, week, month, year...........

So I kick it into touch - ignore it by shutting myself away for as long as it takes, so no one but me sees the struggle it takes to walk, talk, post #funny, enjoy the morning dew or get a few hours of deep sleep......

I have discovered in myself a strength of mind that I never knew I had but it doesnt make it any easier.......

Lupus is not easier, there is no cure and the darkness makes it so difficult to fight every day... but I do.....

 With the power of strength, the love of the universe, I will see tomorrow and enjoy tomorrow, because until the very end, there will ALWAYS be a tomorrow to enjoy.

Mandy. X

[Shadows-walker]

Morning very inspiring and just what I needed ! I was just thinking I would stay in bed as my legs are complaining! And I went out yesterday with a flat battery on my wheelchair so today my legs hurt and I am tired ,and my head hurts !  😊 But I will get up know once I have finished my posts , I have a viewing of a flat at 1.30 for my daughter ! So hopefully by the end of the day and the end of the week we will have a plan and my house will be on its way to be less cluttered! Even if said daughter doesn't move herself straightaway! 

On the topic of darkness I could quite happily I think stay under the duvet forever at the moment ! I thought flares went on for a while maybe a couple of months but we're on two years and counting! Do they never go away 🙁😪 is this it now ? I am starting to look well ! But I feel like crap ! Excuse the French is that word aloud ? I have slept and am starting to sleep regularly but that I suppose is the gabapentin! Not me ! But sleep is sleep isn't it but of course we all know the answer to that ! I have forgotten what natural sleep is 😪 

Anyway a flat is to be viewed at 1.30 the views will be fantastic if she takes it ! Time will tell fingers crossed once I climb the 3 flights of stairs the rooms at the top will be as good as I hope they are 😘

Gentle healing hugs for whoever reads this ! 

Chris xxx😘

[amandalilley in reply to Shadows-walker]

Hi Chris.

Good luck with the viewing, I will send budha blessings of good luck and huge kisses from deadpool.....lol

I am so sorry the flare has been and does seem to be endless, you have my deepest empathy.

I hope your tomorrows gradually improve and your strength, dermination and presence of mind carrys you through each and every day.

X

[Shadows-walker in reply to amandalilley]

Xxxx

[littleeffie in reply to Shadows-walker]

Any sign of a bungalow for you or are they going to give you a pogo stick as cheaper option.

Hope the view  and viewing is good and the legs don't rebel the effort of the stairs.

Take care Chris x

[Shadows-walker in reply to littleeffie]

The bungalow know not yet , I have to be patient ! Been concentrating on getting daughters sorted then I can think about me ! Really excited about this flat ! If I was single I would be jumping at it ! 😊

[Shadows-walker]

Hi the flat is brill , bedroom and living room same size would take king size bed and full bedroom furniture and still have a load of room , bigger than my bedroom , living room is bigger than mine , kitchen and bathroom bigger than mine , think I will move in tomorrow! Ah! One down side it's up 3 floors 😏 But views are lovely , there's been no one in it for 4 months and it's warm , and it being heated from flat below ! And attic space if she needs it ! £280. A month. 

[littleeffie in reply to Shadows-walker]

That sounds very good.

Now all you need is to swap with daughter and get a superhero to carry you up and down stairs!Or get monster truck adaptions to chair ?

Seriously ,hope your daughter feels comfortable and happy and posts pics of views please.

[amandalilley]

That sounds great....x

[littleeffie]

Sorry Mandy if it feels like hijacked your post with replies to Chris.

I fully understand where you're coming from in all that.

The only good thing my first husband did in the time together was show me how much inner strength I had, to be able to get through the very dark times I had living with him ,which have helped a great deal with one illness after another.

It is one thing I have instilled into my kids is that it doesn't matter how dark today is the sun will rise tomorrow clouded or not so never think things are too bad or too dark. Look to nature who always makes it turn light again at some point even if it takes time.

That is an amazing view!Even the cloud formation deserves appreciation and you have caught the contrast of light and dark beautifully.A true reflection of your mood and posts.

Thank you for your on going insights. 

Effie x

[amandalilley in reply to littleeffie]

Hi Effie, no problem at all, my posts are an open book. I am grateful you take the time to read and respond to both the good and the bad.

I am so glad you are home and hope things are slowly improving for you.

Take care. 😊x

[Gaynormaria]

A very inspiring post thank you you have given me the lift I needed . X

[anniejoseph1]

Mandy i fully understand your dark days my family are used to me  now where i shut myself away . Im lucky i have a very good and old best friend who if after a few days with no contact from me  she will find a way to move the darkness away it might be a funny joke or a facebook comment or post if i still dont respond she rings my kids lol and they drag me kicking and miserable out of the house . I know i hide my pain and feelings from my friends and family they call it my dark periods where i hide from the world, im lucky i have my best friend and kids that pull me back into the light.

my 4 year old grandson asked me where i was hurting the other day when i told him it was a lot of places he said nanny i will kiss it better for you  then we can go to the park  we went to the park later that day he was my little bit of sunshine in my darkness that day .

[DaddyzGrl]

Amandalilley,

I feel the words that you so eloquently relayed.Sad, but true and I can relate. But if you start writing Suspense or Mystery novels... You get my money. This was captivating and very detailed.