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The invisible disease….my invisible disease

I have Systemic lupus erythematosus (yeah it is a mouthful…. I know) … better referred to as SLE or Lupus.  It is an autoimmune disorder that affects the joints, kidneys, brain, digestive system, skin and the list does go on.  Although for each person it is a little differently, one thing is the same, it is an invisible disease. It is a disease that attacks you from the inside while on the outside you look perfectly normal…

But just because you have lupus (or another autoimmune disorder) does not mean you should stop living your life.

For me, every pain-free days give me a chance to enjoy the finer things in life. It gives me a better chance to go crazy with my children, to shower them even more love, to have fun and make the best memories for all of us. Painful days do not stop me either…. and that is because my kids are the reason I never want to wallow in this disease… never let it beat me…. never let it consume me… my children give me the strength.

The past two days has been a bit rough, and have been asked this question by a good few people…. and therefore the main reason behind this post

What does it feel like to have lupus?

So this is me, trying to answer as best I can …. in hope that someone will find this to be helpful or informative especially if you or someone you know is going through it too. (the other reason for this post)

If you are going through this, I would hope this encourages you to see that it is not all out of our control.

So how does it feel???

Kak actually… 🙂

Seriously, every day is different. For me, there are days when all I have is joint pain and stiffness. Other days I am confused by simple tasks. My digestive system is more often than not in a constant state of confusion. There are days when my head feels like it is about to explode…
Occasionally, I have difficulty breathing.

There are times when I look in the mirror and find blood clots on my body…. it looks like I have been battered and bruised, there are days when I feel like a bus has driven over me as every muscle in my body aches….

And this is generally the good days that there is no flare up.. but just a mild attack… and then the days when you have a flare up…. where all these symptoms are 10 times worse and sometimes all at once. Nights are filled with fevers… and insomnia… rest is not so easy to come by…

These are the days when you just want to stay in bed and wallow until it is over.

These flare ups can last from anything from a day to weeks… so it is the luck of the draw I guess as to how long I am going to be in at pains mercy.

Don’t get me wrong, there are days, weeks, months that I am almost pain-free…. everything is bearable and I have my rose-tinted glasses on to take the world by storm…

Despite the strength everyone sees, the determination to be better than the pain, there is an inner sadness, there is a constant reminder of just how vulnerable I actually am.

But I don’t dwell on it. Having lupus has forced me to slow down and to constantly be aware of how important life actually is… and how important changes are to eliminate triggers that cause flare ups.

My biggest trigger is stress. Eliminating as much stress from my life as possible is an on-going process and not an easy one I might add. But I think with my outlook on life, and the way I am as a person, I am getting there. My major stress reliever I must admit is my children. They are truly my driving force.

Of course every person with Lupus experiences it a bit differently, but one thing that seems to touch most people is stress.  Stress seems to be a huge trigger for flare ups

I was on a Facebook forum sometime this week, and a woman who was just diagnosed posted this “I have Lupus… now what?”

The most common advice that was given was and which I completely agree with were

  • Get sleep! Yes…. yes … yes…I find that if I am overtired, struggling with insomnia or have night fevers, my symptoms tend to get worse.

  • Reduce Stress! Definitely… I found that limiting interactions with people who cause you stress (especially when in a flare up) helps.  If you know a situation is going to cause you stress, understand it, and try to find solutions before it causes you more pain. Taking time to relax, to let your world stop… is SO important!

  • Listen to your body!  PAY ATTENTION….You will be amazed at what your body can tell you if you pay attention to it. You can feel when you are overdoing things.  I can overdo it and not even realize it until the next day too… but I pay attention…and you do end up figuring out what activities makes things harder for you or how long you can do certain activities without suffering later (this is a trial and error process but you’ll get there).

  • Surround yourself with good people! SO SO IMPORTANT…Surrounding yourself with people who encourage you, lift your spirits, make you laugh, love you, comfort you and who support you makes a HUGE difference… I find I am less stressed and I enjoy life much more!

All of these things ARE within your control!  Taking control of your life and by being informed makes the dealing my easier.

You can take all the medication that is prescribed, but if other areas of your life are out-of-order, you will still struggle.  I know this… I experienced it.

I am surrounded by family and friends who love me and encourage me. I value the things more that really matter in life, I don’t take as much for granted. Every moment spent with my children is my stress reliever…. They may add to my stress at times, but their presence, their love and their faces gets me through each day.

If you have Lupus or a similar disease, or someone you know or love is going through this, I hope this post has helped.

I know I may have went on a bit of a tangent here but that’s the price you pay for having a scatter brain at times, but I would like to stress how important it is to maintain a positive mindset and outlook on life. Find that WILL to survive… find that STRENGHT… and remember that You are in control.

There is another link that I found quite helpful in explaining how it feels… it is THE SPOON THEORY … go check it out.

I have recently been more involved in forums, in the hope that the more people understand and is aware. So if you would like to know more about my story with lupus, or understand more about the disease, or need to get more information about forums etc., please leave a comment. I promise to respond as soon as my fingers work 😛

I leave you with a quote that I find very apt for this post….

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

 

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Author:

A working mother who lives in Johannesburg. I thrive on coffee to keep me sane, music to soothe my soul, reading to pretend that I am clever, and most importantly my kids to know that I am loved.

2 thoughts on “The invisible disease….my invisible disease

  1. Thank you for this post. I have just been diagnosed and found this helpful. I would like to know more about your journey. .. and what you go through on a daily basis with the children. .. it can’t be easy. .. did you always have support. How long are you struggling with the disease. .. I am devastated after I got my results. . It’s good to know that there are others out there like me

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  2. Hi Janet. Apologies for replying so late. I am glad that you found this helpful. I am so so sorry that you have been diagnosed, that you have to go through this. I do feel your pain, depression and struggle. I pray that you have strength and a good support structure to help you through this. I know that there are times when you will feel alone in this, but you are not. There are many out there that would love to help and support you through, me included. I was diagnosed 7 years ago and it has not been an easy journey. I did not have much support, and it was a very lonely period in my life and thinking back, I should have joined support groups (think about this option). As difficult as it is, I HAD to focus on the positives, and will myself to continue as I had 2 very little kids, both still in diapers. I am not saying it was a smooth sailing road, but I must admit that it has made a difference to my daily life. You will have down days, but they are temporary unless we allow it not to be.
    I would like to hear your thoughts, what you are going through and what you are having difficulty with… and help in any way I can. Remember you are not alone… there are people around that care and understand. Much love and strength. Kerina.

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