But you don't look sick?

For me, the answer I'd like to give to this question/statement varies between two responses.
1. Wow, you don't look stupid either!
2. Really? *take a quick look at myself* Thank goodness, I'm cured!!!

There are many difficulties which come from living with a chronic illness. One of the things which can make it even more difficult though is the lack of understanding from other people. I'm not talking about people who truly don't understand, and whom ask me more about my health, or what it's like to be sick all the time, or how I manage to have such happy twins (Truly blessed would be the answer to that one!). It is the people who do know, or the people who make their own assumptions and stick to them regardless of further information who really get to me. It's the comments my husband fields when attending things without me, the people whom tell me I am looking well in a condescending way which just dares me to say otherwise.

Don't get me wrong. There are kind, loving people in my life whom tell me when I look great, and I love it when that happens because it means I really must be looking well. This is in no way addressed towards you.

On the whole I am an excellent actress. I strive to perfect the role of 'healthy person'. I often attend things with a smile pasted on, looking for all the world just like anybody else. Then I get home and have to sleep the afternoon away just to feel semi-normal again. The thing is, this is the way I want to be. I don't want to be sick, and most of all I don't want to look sick. I mean, it's bad enough I feel icky a great percentage of the time.

One of the things I think many people don't realise is how much guilt comes with being chronically ill. Not only that, but in being a chronically ill Mother. Before I had my twins I thought I'd stay at home as it was my choice. Now I stay at home not only because I want to be here with my babies, but also because I can't work. I probably won't ever be physically up to contributing financially for my family by means of having a full time job. My babies go to a caregiver three times a week so I can rest up and go to doctors visits. I have to rely on the kindness of family members and friends to watch my twins so I can attend specialist appointments outside of that time. Which, having six specialists and weekly GP visits, does happen sometimes often.

So my point really is that for those people whom don't recognise someone as suffering a true illness unless they look really sick (and what does that look like anyway?) or just can't help but see individuals with hidden illnesses as hypochondriacs, Please keep your opinions and judgements to yourselves. Or be prepared for a little dose of sarcasm.

You can't say you haven't been warned ;)

Letter to my chronic illness

Using this article I have written my own letters from and to my chronic illness. I suppose it's healing. At the least, it helps to reflect.


Dear Carla,

Congratulations! We are pleased to advise you that you have been chosen to be the host for Dilated Cardiomyopathy, Chronic fatigue, polycystic ovarian disease, drug induced Lupus and a few other as yet un-named chronic illnesses! You will begin to experience the following symptoms, sometimes all at once;

Extreme tiredness. This isn’t your run-of –the-mill get a good night’s sleep and you’ll be fine tiredness. This will be muscle aching, barely able to get up in the morning Extreme fatigue. You’ll be lucky to get through the day without needing a nap!

Arrhythmias and general heart abnormalities. We’ll hit out of nowhere with little to no warning, and continually change triggers so you’ll never completely figure out what causes us! In addition to this, once your heart returns to normal rhythm you’ll feel as though you’ve run a marathon and need to rest for the remainder of the day!

Severe Pain. It’s neat to grow cysts on your ovaries, and you’ll get great stabby pain when they burst. Good times.

Forgetfulness, you’ll never remember what you’re doing or why you went upstairs… until you get back downstairs that is!

As well as all this, we’ve decided your life is much too crowded. In order to fit in this chronic illness, the following is what we’ll take away from you;

The ability to get upstairs without feeling dizzy, nauseas and short of breath

The ability to play and run around with your children like you imagined you would be able to

The ability to be reliable

The ability to maintain a “normal” social life

The ability to function without excessive amounts of prescription medications

The ability to go for walks without your heart racing out of control until you feel as though you may pass out

As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available.
Sincerely,Dilated Cardiomyopathy, Chronic fatigue, polycystic ovarian disease, drug induced lupus and a few other as yet un-named chronic illnesses


Dear Dilated Cardiomyopathy, Chronic fatigue, polycystic ovarian disease, drug induced lupus and a few other as yet un-named chronic illnesses

Thanks for your letter informing me of your take over of my body. While I have no say over this matter, I do need to inform you that I have no intention of letting you win. In addition to this, you have actually gifted me many things I would never have learnt without your presence. These include;

Amazing friendships with close, good, true friends

The ability to see the good in myself for who I am, and not what I can/cannot do

Empathy and a desire to help others

A great knowledge of myself, my health and my body

Compassion for all those that are going through rough times

Ability to know that even if it can’t be seen, people may be struggling and deserve our support

Reason to look after myself

Reevaluate my life to see what is really important, and not wasting my energy on those things that do not matter.

You see, you will not find me an agreeable host. I will fight you, I will not give up. On bad days, I will take care of myself. On the good days, I will take advantage of every precious moment. You have thrown some obstacles in my life's journey, but I will go over them or around them, no matter what it takes. In fact, while I am overcoming them, I will stop for a moment to reflect upon the mountain I am climbing, plant a few seeds and then continue on. I will learn and grow from this experience and help others.
Sincerely,Carla

PS, Screw you. LOL, now THAT was healing!

The Spoon Theory

I think I may have mentioned at some point how much I love google? Well, today it bought me to an amazing article written by Christine Miserandino which articulately explains what it is like to live with a chronic illness. It is entitled the spoon theory .

Now this so perfectly explains what each day is like for me, so much so I felt close to tears as I read the end. The website as a whole in fact looks very interesting, so i will indulge myself a little later to read up on advice from other spoonies.

OK, so more on this article tomorrow as at this point I have used up far too many spoons on my blog today :)

See, now you have to read it to see what I'm on about! Mwahahaha

SVT

So my next update was going to be non-medical related. But I left it too long obviously, because now I have an all new diagnosis for another condition! Although this has been ongoing, I'd had no symptoms for some time and so it hadn't been followed up any further. Then out of the blue, it hits. SVT

Supraventricular tachycardia. Out of no where my heart flips into this rhythm. Tuesday I was sitting on the couch. My heart rate went from 86bpm to 170 in a split second. It was quite scary. I tried to wait it out, but unlike the other times it wouldn't go away. It went for a total of one hour this time. During this time I headed down to the Doctors, where it was officially diagnosed. In the past my episodes of SVT were short and not caught by an ECG or doctor, but it's come back with a vengence.So over the last few days my heart has been flipping in and out of this rhythm. Luckily it resolves itself. The worrying thing is it's lasting longer than it used to before flipping itself back into sinus rhythm.

I'm already on all the meds recommended for this arrythmia so there's not a lot else to do to prevent them. Now I just have to wait and hope they don't get bad enough to end me up in the hospital. Or down the path of needing an ICD.Time will tell. Like all things with me, time will be either a healer or a giant flashing arrow that more needs to be done. You'll know when I know

Fun times at A&E

Early Wednesday morning I ended up going into A&E. I had severe pain in my right side, and after waiting a few hours (Most of the night) for it to settle, we headed into the hospital. I was the only one in the waiting room at first, but the triage nurse told me it would be a long wait as things were hectic in the actual A&E. I was actually well looked after in the waiting area and didn't mind the four hour wait. If I had I most certainly would have had to change my mind after seeing a lady, whom I named heart attack lady, struggle in having trouble breathing. She was seated in triage for about five minutes while they found a room for her. The whole time she was in immense pain and had great difficulty breathing. That five minutes must have felt like an eternity to her.

So when I was seen a line was quickly put in, and bloods taken to see if it could be my appendix. I was given a lovely array of pain killers. The bloods came back fine and I was transfered over to the WHAS unit. I got to wait in a lovely room for an ultrasound, and was then informed by the docter I had one extremely swollen ovary covered in so many cysts they couldn't be counted. Nice.

So I'm home with a lot of pain meds and a card for the WHAS unit in case I need to go back in. I'm also now under the care of a gynaecologist and Endocrinoligist, bringing my total of specialists to si (the other four are rheumatologist, cardiologist, general medical and haematologist). BUT I think we are getting somewhere, and I feel as though I am moving forward. I will hopefully no longer be interesting medical mystery girl and just be boring chronic illness girl once more :)