The poem below, I wrote it one night when I could not sleep! Instead of getting frustrated I thought I can put down what I really felt!
Sorry its really long! đ
I AM ANGRY WITH YOU MY BODY
I am angry with you my body
For making me the way I am
For letting me think things will get better, when they are getting worse
I am angry with you for letting me down from a tender age
Enduring all sorts of pain that came to me through you
It seems you made a choice to bring shelter to everything that comes your way
If you were a garden, I could say you sow some nasty plants which are not of any benefit to you.
Is it the saying that goes you reap what you sow that inspired you?
I think I misunderstood as you are reaping the harmful stuff only
When growing up I thought I was doing everything by your book.
Thought I ticked all the good boxes containing the good things
I followed the Dos and Donâts graciously but only to be left baffled by what was coming
Some of the things which where,
DO NOT
Go in the sun without covering your body and that includes wearing a hat
Eat fried food, as its bad for your health
Use perfumed lotion, soap, or spray perfume as it is bad for your eczema
Do strenuous exercises as the pain will be unbearable
The list goes on and onâŚâŚ
Dos
Keep yourself clean
Eat a balanced diet
Keep yourself hydrated through drinking lots of water
Keep healthy and take medication as prescribed
Keep spectacles on you all the time to see better and avoid more damage to your eyes
Be happy no matter what!
I am trying to make you understand that I have tried everything
After all that I still got the worst of all
Do I need to make another list or just let it be?
What am I supposed to gain for not saying it?
All these things have found home in you my body
I am mad with you my body,
Where do I start, Iâm not sure, maybe Rheumatic heart fever/disease?
Your first candidate
You got comfortable and invited a close friend LUPUS
I guess you did not know LUPUS travels with a lot of friends to support it
In no time reappeared with a vengeance
Arthritis comes with all sorts of joint pains
Fatigue, donât get me started, can make me feel like a loser
How about fibromyalgia second best friend of LUPUS as I see it
If you had assessed that one, I donât think you would have invited it as it takes over everything
The pain seems out of this world!
The pain breaks all records scales of a 1 to 10 scale!
That scale does not work on fibromyalgia
Letâs not forget Anaemia, well this one goes hand in hand with Fatigue, pale skin, loss of appetite, headaches, you name it.
How about Celiac diseases, I guess this is going to be a hard one
It comes with its own Dos and Donâts.
Thalassemia! What is that! I did not even know there was such a thing! Through you now I know!
Am I supposed to know and understand all this, or do I have to keep fighting with you to make things better!
I thought eczema was enough, but I was wrong,
There is urticarial vasculitis!
That one is incredible in pain and skin rashes â wheals as they are called, it gives the skin a decorative feature which leaves me ashamed to face the world,
What can I say I have it all!
Melasma is another skin problem that came and disfigured my face!
As if it was not enough, or maybe because I could not take it anymore,
There came Major depressive disorder to twist my sanity,
Empty Sella Syndrome crept in as well, a disease I learnt through diagnosis
A syndrome I only learnt from the doctors and I did not know existed,
These two made my brain unhinged and confused
This was all overwhelming and I could tell you I could not cope
Anyway, the sign was clear:
Stroke left me with left side hemiparesis
Pleurisy attacks when it feels like
What about pericarditis not forgetting NSTEMI in short Heart attack!
Before that another stroke
Well that was becoming habitual
By this time, I knew exactly what I wanted to do, to help you my body to get better,
With help and support from a group of professionals
Attending doctorsâ appointments to name a few with their specialty
Rheumatologist for the Lupus and Fibromyalgia
Endocrinologist for the empty Sella syndrome
Gastroenterologist for celiac disease
Dermatologist for the Melasma and Urticarial vasculitis
Neurologist for Headaches and Empty Sella syndrome
Ophthalmologist for the eyes
Pulmonologist! That one for the Lungs which are giving me pain in all sorts, Persistent cough, Chest pain, Lung cysts, Pleura effusion
I got short of gist!
So, go on to
Optician
Dietitian
Dentist for problems brought up by Lupus
General Practitioner
Musculoskeletal practitioner
Physiotherapist
Occupational therapist
These people are wonderful!!
Remind me when I forget of course you know I have brain fog, combine it with bilateral optic drusen what do l get?
Blurry sight with a big pinch of memory loss
Hurray we are winning, arenât we?
Can I ask you something?
Where did I go wrong?
I did everything you wanted, some of it so embarrassing but had to do it to better myself
I always wanted to have a perfect well-maintained body but seems thatâs never going to happen
Embarrassing as it was, I had to let the specialist see what was going on as I needed to get well,
The friends you invited made it more difficult for me as I had to take more and more medication
In turn some of the medication did well
Considering I felt better at times
Guess what the side effects did to me?
They are horrendous
I chose to keep taking the medication in the hope of getting better and wonder why Iâm still not better
You know that some of those ailments cannot be cured Right!
Let alone have any medication specifically made for them to manage them
But trial and error of medication of different diseases used to ease the pain or suppress the immune system
Of all this, I am not complaining
It is too late for that
My anger is on that some more diseases keep creeping in you my body!
Whatâs the matter with you?
Can you not see that I am trying to make things better and, yet you seem to be giving up on me?
The bond we have is inseparable
Do you still want me to continue this journey with me?
Do you still believe that all those unhinged things in you can be tightened a bit to go on?
Do you think that if I thought there is no hope, I would not want to go on trying?
I know there is Hope!
What more do I need to say or do to keep our partnership?
I have never smoked
I have never been a good friend to alcohol, we went separate ways when I was young
I am very keen on good diet, whatever good means?
I eat lots of vegetables and fruits
I drink lots of water
I rarely indulge in sweet things
I exercise more often when you allow me
I know we have our differences regarding weight
I blame you for all this weight gain as you are the one who invited your friends to stay
The medication makes it hard to shed a few pounds off
I am trying and will keep trying until we reach an amicable agreement
Some of the medication make me eat more than I should
Can you consider looking at what I am doing to make us better and make changes
Look at me, I still think we can do it
What happened to fighting the bad to keep healthy
It seems you are becoming my number one enemy
Why are you fighting yourself?
If you were a car, I would say you go for servicing
But with you itâs becoming difficult
It seems you are doing the unthinkable by fighting yourself
Where do I stand in all this?
Where do I go and get help?
All specialists are trying but, in the end, it is up to you to accept the help and support you get
I have tried a lot of things
Acupuncture which was meant to reduce pain â not worked
Yoga- still doing when you let me
Physiotherapy, that one is constant
Different diets, most to make sure I get all thatâs needed
What I donât understand is you rejecting some of the food I eat everyday
One day the food is excellent, the next it gives me tummy ache or feel sick or burns my mouth
My legs are giving in
Walking has become a task
My face is riddled with brown patches that look like dirt
My spine is losing it
The pain is unbearable, but I am willing to keep trying to get you better!
Are we not on the same page?
If we are then, those pages must show the same things we have to do
Does it matter that I spent more time indoors?
Does it matter that at times I fear going to crowded places
Does it matter that it takes me more time than before to get dressed?
Does it matter that I need support to wash you?
Does it matter that some people donât really know whatâs going on but think I am putting it all up or I am a hypochondriac
Does it matter that my family wonât come near me when they are sick for fear that I catch whatever they have
Does it matter that all the friends I had before are no longer available as I usually donât have time to spend with them
All that does NOT matter if we know what is really happening
I guess I must be patient with you
Today I am saying
I AM ANGRY WITH YOU MY BODY, but letâs work things out
Does it matter when I make plans which I never fulfil because
you wonât let me go through with them
Does it matter that one minute I am fine but the next I am in pain?
Does it matter that I cry secretly on my own because I fear whatâs to come?
Does it matter if I blame myself for all the dreadful things happening in my life?
What matters is that I am ready to make things better
What matters is that I let those close to me to be aware and know exactly what is happening
It matters that I am not giving up hope as I am not alone in this!
I donât want to be angry with you my body as we are on a long journey together!
LETâS KEEP ON KEEPING ON THERE IS STILL HOPE!
â¤
I am new to the site
Running with lupus
Activity -v- fatigue ... Am I being a lazy wimp?!
lupus, pain in the you know what !!
