Saturday, 24 August 2013

My Invisible Illness

As many of you would know, I have been unwell for some time. Well, I have a diagnosis. It's not great. It's something I have to live with for the rest of my life. It may be able to be managed with medication, but that won't stop it, just ease symptoms. 

A quick history. About 18 months or so ago I was sick. Turned out I had Ross River Fever. It's a nasty virus that knocks you for six! It left me so tired I could barely look after my girls, Muddled Hubby was having to have time off work. I ached from head to toe. It lasted about 4 weeks then gradually eased off. 

But I never really got "better". I never really bounced back. I have struggled with the lethargy ever since. I have had multiple blood tests that all said I was healthy. I fell pregnant, then miscarried. Then the aches started. My right hip first, then my left shoulder. Then in little random places. After about 6 weeks of my hip aching I went to my GP and told her about it. She sent me for tests, which all came back clear and we decided on a simple course of exercises, nurofen and heat/ice packs. 

It didn't help. Some days there would be no pain at all. Some days it was like I had never been sick. And some days, my hands would swell, my joints would ache, and my hip would be so painful I would walk with a very obvious limp. So I went back to my GP, and this time she decided to run bloods that looked at Auto Immune markers. I got a phone call almost immediately asking me to come back in. All the markers had come back positive. I had some sort of auto immune problem, but she wasn't sure which one. It was time to see a specialist.

I do not like specialists. They always cost a fortune. They talk a weird language. They judge every little thing you have and haven't done in your life. They have funny accents, and in my experience, was to do invasive procedures, which involve hospital and worse, needles. 

This specialist was, is, different. He didn't judge me. He didn't say lose weight and all will be well. He looked at my history, looked at my joints and listened to me. He sent me, of course, for more tests. Bloods, MRI, ultrasounds AND x-rays. He covered all bases.

Then he told me. I have Sjorgren's Syndrome. There are 2 types, Primary and Secondary. He told me only time will tell if it is one or the other. But, given my history, given my test results, he feels fairly sure it is Secondary. If that is the case, again, only time will tell what the Primary problem is.

Then I left his office with a pile of paper.....

My Hip, is so badly damaged. I have torn and eroded cartilage in between the femur and ball of the hip joint. There are several torn muscles around that hip joint too. Off to see an orthopedic surgeon, as the damage, that has been caused over a long period of time, is severe enough that surgery is probably the only option. At not even 40, I will need Hip Surgery and a long recovery time.

My shoulder has Bursitis. The fluid filled sac that aids in the movement of the tendons and cartilage around the joint is infected, and rather than moving smoothly over the joint, sticks & bunches up when my shoulder is used. That is causing the bursa to leak fluid and become infected. Back to radiology to have cortisone injections under ultrasound. (see!!! I told you!!! NEEDLES!!! And nasty ones too!)

Finally a referral to a physio. This will be life long. I have to learn exercises to strengthen and keep movement in my joints. How to protect them from future damage. And of course, to heal them now.

So on top of that, I get to continue to have lethargy for no obvious reason. I get to have randomly aching joints, swelling joints. I get to have dry skin, dry eyes, and eyes. 

Yes, I could lose weight, and yes that WILL help reduce the severity of the symptoms. This is complicated though, by the fact that I cannot exercise effectively and regularly. If I had willpower, do you honestly think I would choose to look like this?!! It is something that I am working on, my willpower, and something I won't give up on. And when I can exercise, I do! I have a gym membership, and I dont plan on giving that up any time soon! 

All this sounds pretty awful, all put together like that. And yet, if you looked at me on the street, you would think "overweight, sure, but otherwise normal and healthy". But I'm not. Every day I wake up, it takes my body up to an hour to get moving properly. Some days I AM normal, I feel great. Other days, like now, I feel like garbage. I feel exhausted. I hurt. I don't want to take pain killers during the day because they leave me like a zombie, but the alternative is to sit and deal with pain, which is exhausting. It is a silent illness, an invisible illness. 

I find now my PND, Depression and Anxiety is accepted, understood, more than ever before (convenient for me, given they are both well under control now!), but auto immune diseases, or invisible illnesses, they are not accepted. Do you honestly think the majority of people out there WANT to feel like this? That if it was a simple as getting up, moving more, taking some panadol, getting regular sleep, just "pushing through it", do you seriously not think most people would do that? It is not that simple. Sure, I don't doubt there are people out there who "fake it". Every disease, syndrome, every type of illness will have its crazy person faking it to get attention, to get sympathy, or whatever it is they seek. But MOST people? Most people would do ANYTHING to change their situation! I know I would, which is why I don't give up. 

I am still hopeful. I am grateful that there are treatment options available. These treatment options, should, in theory, relieve the symptoms, reducing the number and severity of the bad days. As the specialist said, I should be able to live a relatively normal life once the medication starts working. And so I am grateful for answers, for direction, for treatment plans, for HOPE.

I honestly believe God has let this fall on me for a reason. I do not believe he "gave" this to me to punish me, nor do I believe he just "let this happen". I believe this was meant to happen for a reason, whatever that reason is, I am along for the ride, my eyes open and waiting to see where my journey in Christ will go next. 

Do I like it? No. I feel useless. I feel helpless. I feel like a burden on my family, and especially on Muddled Hubby. He didn't marry this. I hate watching him work long hours then come home do the housework I should be doing. I hate not having the energy to give my kids with world and then some. 

But rather than wallow in the "poor me" pool, I choose to step up, face it with humour and a smile, and tackle it head on, determined to win. Sometimes I will fail, or fall down, but I can dust off. This will NOT beat me!

1 comment:

  1. What an inspirational article! I know you've opened my eyes to always see things in their better side and to keep that faith burning that there is always hope at the other end. I'm having a hip surgery next week and I could really use some inspiration messages-- and guess what, you just did that to me! Still, I'm torn between ceramic hip or MoM. Anxiety arose after reading all those side effects and stryker hip lawsuit floating around.