The Ultimate Betrayal

I’ve been seriously betrayed this week. It hurts. It’s made me incredibly angry and frustrated. But the worst part is, it’s my own body that betrayed me. I was enjoying the Easter break with a friend, the weather has been incredibly beautiful for this time of year and we were out enjoying the sun, walking through some stunning wetlands, joining in a lively festival at a historical town, kicking a soccer ball, tossing a footy and we might have even rolled down a grass hill.

But then over dinner, I started to get a bit of a shiver – I had a jumper on but I felt a chill in my bones. I started to feel quite achey and within a couple of hours I was shaking uncontrollably with fever. I had a pounding headache and felt nauseous. For the rest of the night I woke every half an hour, sipping on water and trembling. My thoughts were hazy and confused and I was wondering if I’d caught the flu.

Around 4am I got up and had a steaming hot shower to try and break the fever. Eventually it worked and the chill turned to sweats.

I started to remember that this was typical of previous MCTD flares I’d had and I felt incredibly angry that a day in the sun with a bit of activity had ended like this. What frustrated and scared me further was that I had a six hour drive ahead of me and I was feeling too weak to get out of bed.

I started to try and think of ways to break up the trip, maybe extend my accommodation or stop somewhere for the night. As I often find with this illness, I’m having to plan and re-arrange things and it makes me feel trapped and like I can’t rely on myself. And if you can’t rely on yourself, who can you rely on?

One of the hardest things to deal with is being out of control – being so sick in-front of whoever is there. Apart from my immediate family – I don’t know if I’ll ever get used to people seeing me during a flare for the first time.

There is an awkwardness, they want to help, they want to do anything to help but there isn’t anything that can be done and I know I just have to ride it out. They can bring me blankets and water and panadeine but in reality I am alone in my pain.

I hate that I put my friends in that position and that when I’m in the thick of it I can’t focus on anything else but how sick I feel. And as the fever subsides, I feel humiliation and embarrasment that I can go from the fun-loving girl to a weak patient in a short space of time.

This is not who I am – this is not who I was. But now this is how, from time to time, I am seen.

Down to 2mg, steroids – be gone!

It seems a bit ridiculous to me. I’m inching off a drug, half a mg by half a mg, and I’m feeling it. More than feeling it, I’ve felt ill for days and I worry that it gets harder the closer I get to zero.

It’s been a week and I still feel not right – nausea, slight fever, aches in all my muscles and bones. I’m not even sure if it is my bones that are hurting but that’s the only way I can describe it, like a deep, ache in my bones.

I’m really fatigued and I just feel sick.

When I stopped the last half, I convinced myself that my body would have no idea it was missing that little bit. It seemed such a ridiculous little bit that it couldn’t affect me. Oh, how wrong I was.

The hardest thing I find, is never wanting to use my illness as an excuse. I don’t want ANY reason for people to think I’m not up to something or shouldn’t be included.

This week was busy at work, a number of events and organisation and while I was fighting a mild fever, feeling dizzy and weak – I desperately didn’t want my work mates to know. I don’t want anyone to think I’m not capable because I might be dealing with some pain and withdrawals.

I am confident that that is what it was and as soon as I adjust to this level of steroids and my body remembers how to produce its own cortisol, I will be back to my very own version of normal and the day won’t be such a struggle any more.

I’m ready and waiting.

The butterfly has landed

As life goes on with Mixed Connective Tissue Disease, you find yourself waiting for symptoms to come on just to tick them off.

“Raynaud’s? Of course I have that. Which joints hurt? Any of them and all of them, depending on the day. It changes. Oh yes, some days I feel like someone has taken a baseball bat to my back – I’m used to it.”

I’ve become quite blase about what it means to be sick all the time and honestly….sometimes I just forget I have it, especially if I’m lucky enough to be feeling pretty good.

But then, ever so quietly, the butterfly lands and there is no hiding some things.

One of the most obvious symptoms of MCTD and lupus for that matter, is the Butterfly Rash.

I’d been keeping an eye out for this one because, from my research, the butterfly rash is meant to be a big, red rash over my cheeks and bridge of my nose.

Despite scattered red dots turning up randomly on my face, they never took the shape of a beautiful, winged creature so I thought it wasn’t that. But a visit to my rheumy revealed that, this is infact the dreaded moth and that the rash shows up how it wants, when it wants.

I’ve always been a rosy gal. I blush ALL THE TIME, over the most ridiculous things. I actually blush when I’m not nervous or embarrassed, just because I’m in a situation where I think someone else might be nervous or embarrassed so I flush.

It’s incredibly frustrating. But what’s even more bizarre now, is that I am going red, without even thinking about thinking about going red. I’ll look in the mirror and WHOA there is that butterfly in all its glory.

So…luckily I’ve had years of experience of hiding the blush. This might involve caking on the foundation, it might involve trying to keep my body temperature much lower than is should be and holding ice-cold drinks against my face – which in turn, turns my fingers white thanks to raynauds.

All I can do is be thankful that, as a woman, I can hide behind make-up and try to not think of the superficial aspects of this disease….when there are so many physical symptoms – that are unseen but so much worse.

Tears on a train: How MCTD made me cry twice this week.

Tears x 1
3 mg is hard. As mentioned in my last blog I am weaning off my steroids and I was going ok with only a little increased pain, until one week into the decrease I woke with a heavy ache throughout my whole body, I could barely lift my arms, putting pants on was such an effort – (but I was pretty sure that was a necessity for work so pushed through.) By the time I got to my seat on the train and sunk back into it, I was death staring everyone around me, feeling so drained and emotional that I hated everyone.

“Why is that girl smiling? This guy next to me better not need to get off early and make me stand up. What a stupid hair do…why would she think that is ok? What are you frowning about, you have no idea why I’m frowning. SHUT UP! I HATE EVERYONE.”

Of course, I don’t like feeling like this, so angry and upset and knowing I have to go and face people at work that I like and handle the whole day – well, the tears started. I slipped my sunglasses on and hoped no-one would notice.

I was telling myself it was withdrawals from the drug and that it would pass but what I was really thinking was…this is too hard! And boy, did I feel sorry for myself. Yes I did post on Facebook to let people know…I didn’t want to feel so alone in the pain and sadness. I wanted support.

And so the tears fell.

Incredibly…the next day when I woke up, the pain had decreased immensely and my mood had lifted. I thought I might be over the hump. I almost, for a second, thought ‘Bring on 2 mg!’ but then I slapped myself and thought, I’ll give myself a few more weeks on 3mg before I cry on the train again.

However this was not the case.

Tears x 2
On the Friday morning I was on the train to work again and an email came through on my phone. It was from a girl about my age, Lisa, from Holland who I actually met through this blog. She also has MCTD and we work in similar jobs and have similar lives. Lisa had asked if I would mind her writing a blog post about how my blog inspired her (shucks!) and link to my blog. Of course I said yes…especially since she was going to write it in English so I could read it…as well as making it more accessible to English speakers around the world.

So I clicked on her blog and straight away the tears started flowing…from the first short sentence,

“It was your blog that won me over.”

Lisa’s blog post reads like a heart-felt letter from her to me. Of course, in this age of sharing online…I’m going to share the link with you.

I wish Lisa all the success with her blog and of course her MCTD. It’s comforting to know that on the other side of the globe…someone understands.

Read Lisa’s blog here

Surviving camping with MCTD

Happy New Year!! It certainly was a happy start to 2012 for me as I conquered one of my fears caused by my Mixed Connective Tissue Disease – I went camping!

For months I had played with the idea of attending a fabulous music festival in Tasmania, Australia called Falls Festival, but I was hesitant as it meant camping for a few days. As any MCTD sufferer would know, this is a scary thought as sleeping on the ground could prove disasterous and cause incredible pain that would ruin my trip.

Luckily for me, my flatmate, who encouraged me to go, had an inside contact. Her brother manages the site of the festival and was able to offer me a tent and a swag. For non- Aussies, a swag is a canvas bedroll with a mattress in it that you can slip your sleeping bag in and not get attacked by bugs/snakes etc. My swag was insanely comfortable….as comfy as a regular bed and I was snug as a bug.

Also, with getting the swag and tent when I got there I didn’t need to struggle with carrying that weight on the plane and shuttle….so it was win win.

Realistically, I must be in a pretty good place health wise to be able to do that – but I’m pretty thrilled and now dreaming about other things I’d like to do.

However, I think I still might be a way off returning to basketball or taking up volleyball and tennis.

Still…upon returning home, to celebrate….I lowered my 4 mg of prednisolone to 3 mg. I’m feeling it but pushing through it because I want to be off this drug by end of April if possible.

Here’s to a happy, healthy, pain-free 2012.

Am I a drug addict?

That’s a provocative question, I know. I’ve been doing a lot of thinking of late and I’m finding the line has blurred between relying on a drug for health reasons – and what is said about drug addiction. Let me explain.

About two weeks ago my rheumatologist and I decided to start tapering off my prednisolone (steroids). This was welcome news as for two years I’ve been on 5mg (a very low dose) but I have relied on it to get me out of bed in the morning.
You may remember the miracle of a day when the drug first kicked in – you can read about it here.
Now steroids can do all sorts of awful things to you long term, osteoporosis, hump back…make you fat. Clearly, I remember all the important ones, there are others. So it was always the plan that once the Plaquenil and Methotrexate started working we’d taper off my prednisolone.
And it was this tapering that got me thinking about whether I’m addicted:
* I need the drug – if I don’t have it around the same time every morning I rapidly feel myself going downhill. Pain, confusion and a lack of being able to function. If I were to skip a day or two my body would literally not be able to cope (so I’ve been told) and cold turkey would make me incredibly sick.
* Prednisolone doesn’t actually make me feel ‘good’ it just makes me feel normal. Is that not an addiction if I need it to feel like my normal self?
* I rule my life around it – making sure I have enough stock at home, if I’m going out making sure I have my next dose on me and never allowing myself to go without.

I suppose the main difference is the fact that I want to get off it and I can clearly make the decision to do this. Psychologically I’m not dependent. Just physically.

Weaning off
So I’m going without – just down to 4mg and I tell you want…I feel that 1 mg missing. I have come up in welts again, my knuckles are more swollen than I’ve seen them, I feel imaginary bruises all over my face and I’m so lethargic.
But I just have to think….one mg at a time, I will rid my body of this poison it has come to rely on. And that will be a great day.

Limitless

One of the major hurdles a chronic illness sufferer has to face is the newly imposed limits on many aspects of their life. At first you discover these limits but coming face to face with them unexpectedly, like when a game of basketball becomes impossible over night because the running exhausts, the throwing of the ball sends shooting pains through the shoulders and jumping more than 5cm off the ground is unthinkable.
But what happens, after living with MCTD for two years, properly medicated when you’ve become so used to saying ‘no I can’t do that’ when you realise that maybe, just maybe….you’re imposing your own limits and it’s time to start pushing.
****
Life is good. It took a lot of time and grieving and adjustment to get here but now, life is good.

My only real issue is the fact that I’m sick of saying no to things. Saying no to music festivals, to bowling, to a bush walk, to kayaking, to camping, to Body Combat, to Body Attack, to backpacking….too much!

Then I had a realisation….how do I know I can’t do all these things? Since I’ve found my drug balance, maybe I should just start saying yes.

If I remove my own limits by trying a few things here in Sydney….see how bad the consequences are and if I can get out of bed the next few days….then that is something I can tick off my list.

To take the next step…if I can do it here in Oz….I can do something similar overseas.
And it is those limits that “I’ve” imposed on travel that I’m dying to not only push….but absolutely smash out of the park.

Well…I’ll keep you posted.

The Yum-Cha Curse

NB: It’s been a while I know. I actually wrote the below post weeks ago but felt too sick that day to post it (I’ll blame it on the Yum Cha)but for the last few weeks, with a new mix of plaquenil and methotrexate (and of course the usual prednisolone and anti inflams) I’m feeling really great. To other MCTD sufferers….you can actually feel basically normal with the right cocktail and a bit of luck. Plus a dose of happiness has helped me a long too. xx Nomes

The Yum-Cha Curse
After a night out on the town, Yum Cha is a favourite brunch choice of mine and my friends…those strange little parcels of steamed or fried Chinese snacks delivered regularly to our table.

But I have an issue with Yum Cha. Generally the doors don’t open until 11, it’s my first meal of the day and what that means for an MCTD sufferer, is that I don’t take my medication until after I’ve eaten….at around midday. Because I can’t take my pills without eating but I don’t want to ruin the Yum Cha experience, I wait it out.

The problem, of course, is that I rely on my medication to get through the day, and when I take it during the working week, it’s getting into my system from 7.30am.

The scary thing is, when I go to Yum Cha, this is when I really notice how much I can’t function without the medication. By 11am my body is feeling incredibly heavy and sore, I find it hard to lift my arms up, my neck hurts when I turn my head, I start walking in slow motion and stairs become a nightmare. I’ll get shooting pains in my hands and sometimes it hurts to breathe. In addition to the physical pain my mind gets scattered and all I can focus on is when will I get the drugs and start feeling better.

I get grumpy and frustrated and short with my friends…yep, it’s a wonder they still go to Yum Cha with me. I think they do understand though when they actually see me deteriorate in front of their eyes. So while we scoff pork buns and spring rolls I look forward to my last bite when I can scoff my little handful of pills and start the day.

Ohhh biopsy…not autopsy

Sometimes your mind does a word association without you realising it and when my rheumatologist told me recently I might need a biopsy on my recurring welts I’ll admit, I was a little scared. Mostly because I think I thought it was something major…and coz it sounds like autopsy. Well I’m happy to report that a biopsy is not such a huge deal, although not all that pleasant when it’s on your backside.

As a reminder, I have had these strange red welts about the size of a large coin, they are hard and raised and sore, after a few days they fade to brownish purple and then disappear. The problem recently has been that everytime some fade, new ones come up so I’ve been left looking black, blue and red and feeling quite sore. It’s incredibly frustrating and I’ve been left wondering if I will forever be tarnished like this. So, my rheumatologist managed to get me in very quickly for a biopsy with the Skin and Cancer Foundation – where doctors train to be dermatologists. I have to say…I thoroughly enjoyed my visit to this clinic. Is that weird? Yes it is, especially when it involved me wearing a gaping gown, lying on a table with people taking photos of my welts, prodding me and discussing how interesting it is.

The reason I enjoyed my visit was the people. From the doctors, to the nurses, to the anesthesiologist and reception – everyone was so friendly and chatty and cracking jokes. It seemed like a great place to work and I felt totally fine with being so exposed and having more and more people coming in to give their opinions.

The only bit that really hurt was the needle for the anesthesia, the digging around and cutting out fat cells (or whatever they were doing back there) I couldn’t feel at all. It was amazing. So now I have a couple of stitches and I have to go back to get them out and see what they can find out.

What I really hope they don’t do is tell me it is just a part of the illness and there is nothing they can do to stop them, because as much as I liked the clinic….I don’t want become a regular visitor.

Chronic illness – It. Is. Always. There.

One of the most exhausting parts of having Mixed Connective Tissue Disease, or any chronic illness, no matter what it is, is the unrelenting presence of it.
It. Is. Always. There.

It consumes you. It consumes your mind. It consumes your body and you have to do everything you can to not let it become your everything. You have to keep busy, you have to have good conversations with people about anything else. You have to work and hopefully enjoy what you’re doing and keep your mind occupied enough that you don’t dwell on your sickness. And sometimes, you get drunk.

And for a while you laugh, and you dance and you talk rubbish with friends and you talk to strangers who don’t know you have an illness. Then the next day you pay for forgetting, but for the moment you have peace. Your mind forgets and is quiet.

I have written before about the grieving process you go through when you are diagnosed with a chronic illness. Grieving the person you were and the lifestyle you had. Sometimes it still flattens me when I realise that I will never be the person I was and the more people I meet, they will only ever meet the sick me. They will never know the ‘real’ me.

But what I think is harder is knowing that with my friends and family- MCTD will always be on the tip of their tongues. They will never think of me without it. I feel like I’m losing my identity and the glaring focus of who I am, is my illness. This is a hard thing to explain, a hard concept to pinpoint but when I speak to my mum, my sister, my Nanna, my aunty, my friends – of course there is concern and interest in how my health is – but I just wish we could strip that away and I could know what they used to think about when they saw me or spoke to me. What used to be the first thing they asked me about?

On second thoughts I think it used to be – are you seeing anyone interesting? So maybe this distraction isn’t so bad 😉

A number of times recently I have spoken with good friends or one of my sisters and had a real conversation about life and issues and people and them and I hung up the phone or walked away realising – we did not discuss my MCTD at all. More than that, I don’t think it crossed their mind. Even better, it didn’t cross mine. Perhaps this is a sign that as time passes and people adjust to me with my autoimmune disorder, they realise that things won’t change and it comes off the hot topics list. I could live with that. I know that if I needed to talk they’d listen, but maybe, just maybe – I won’t lose my identity after all.