What an MCTD flare means to me.

I’m not sure if I’ve ever written in detail about a flare. I know everyone’s experiences are different and some people don’t have flares, others are just in pain all the time or perhaps some go through what I go through.

Last night I had a flare. It was probably the worst one I’ve had in many years. It scared me. It got me to the point where I started panicking that maybe my internal organs were shutting down and maybe I should be going to the Emergency Room but I don’t because I am presuming it’s just a usual MCTD flare. So I thought I’d share the experience, as best as I can.

Yesterday, my boyfriend and I went for a swim at North Sydney pool. Stunning day, under the Harbour Bridge, blue sky, extremely bright and I jumped in the slow lane and for around 40 mins did leisurely breast stroke one way and then kicked back on my back the other way. I’ve been working out pretty hard in the gym lately, so this didn’t feel like a hard work out.

Around 40 mins in the mid to late afternoon Australian sun and then we jumped out, drank a bottle of water and headed home. Sitting on the lounge relaxing, sipping on a cider, about an hour later I started to feel a little achy.

“Wow, D, I must have worked out harder than I thought, I’m a bit sore.” I tell my boyfriend.

I get up around 6pm and start cooking dinner. I quickly start to go down-hill. My flatmate comments that I look really tired and I find myself holding myself up on the kitchen bench and breathing deeply. I have a deep ache in my shoulders and across my back. I have a deep fatigue sweeping over me over the matter of around 20 minutes to half an hour. I feel determined to cook as it’s my turn and I don’t want to make excuses.

The malaise I feel is all consuming. I start to cry. In pain and in frustration. All while trying to scrub the potatoes and peel them. The tears are flowing and I start talking sternly to myself. “Come on Naomi. Just do it! You can’t stop now. You stupid idiot, you’re just cooking dinner.”

The tears turn from streaming silently to sobs and my boyfriend comes in to check what’s going on. He tells me to stop cooking if I feel sick and I tell him no! It’s my turn to cook. I can do it. It’s not his job to do everything when I feel sick.

So he returns to the lounge room and I continue to sob hysterically, breathe deeply as if I’m in labour and swear at myself to get through it. Finally dinner is done and I tell D to serve up and that I am not hungry any-more. This is when the chills start.

I grab a blanket and curl up on the lounge and my body is overtaken with extreme shakes. I have a chill deep in my bones and so I head to the bathroom where I have a boiling hot shower – no doubt using all the hot water in the house – for around 20 minutes. Then I ease myself out – still sobbing by the way – and dry myself as best I can and fall into bed.

The shaking hasn’t subsided and I text D to bring me a hot water bottle. For some reason, when I’m in this state of fever I find it comforting to talk to myself. I may be a little delirious but I talk nonsense to myself, I laugh, I cry I repeat words over and over. I’m not sure if it’s a distraction or a focus tool but it comforts me in a time when I feel completely alone in my illness, my fear and my pain.

I text my Mum. It’s not that I want her to worry but just knowing she is thinking of me and sending me hugs helps. After around two hours of the chills, the hot water bottle kicks in and the chills disappear, replaced with a hot temperature. I kick off the blankets and lie there when D comes back in and I tell him the chills are gone and can he bring me a big bottle of water I can squirt into my mouth. Because I’m in so much pain I can’t sit up or roll over. I ask D to pull me into a sitting position. He recoils at the heat of my back. I drink some water and down some Panadeine. After about another hour of still not being able to move I decide to take more Panadeine. I know it’s a bit early but if it were a stronger drug it would have more codeine in it so I figure I should be fine.

I forget I haven’t eaten anything in around 7 hours and within about 20 minutes I’m moving as quickly as I can (slowly) to the bathroom to throw up. I sit on the bathroom floor cooling myself against the tile wall.

At this stage I’m furious because I know I can’t exercise the next day and probably won’t be well enough to go to work. I hate letting my team down and I hate that when I am trying to lose weight I can’t keep up an exercise routine. Yes, all of these things are running through my head as I lie with my head in the toilet.

After a couple more vomits, I have a bad pain high in my stomach. Was that my stomach? Or was that my liver? Where is my liver? I know my liver could be in danger with one of my medications. This is when I started to get scared. Should I be going to hospital? I don’t know. I don’t know. I don’t know. And I know only I can make that decision. I decide if I vomit again then I go to the hospital. Luckily from this point I manage to fall into a fitful sleep for around an hour. Every time I need to turn over or move my arms, I wake up from the pain so I take my pillow and water and walk slowly to the lounge. I eat some ice cubes and wait to see if my stomach can handle it.

I doze on and off for a few hours and then when D goes to work early, I manage to get back to bed, take some Panadol only and fall asleep.

There will be no work, there will be no exercise. There will be a day of recovery. Exhaustion and aches which hopefully by the day after will be gone and I’ll forget how bad it was. And that’s what I look forward to.

Putting the shoe on the other pain-free foot

I’m used to being the patient. I don’t think I play up to it but I’m used to people asking how I am, I’m used to never being fantastic but knowing the appropriate response to make people feel comfortable enough without me lying.
I’m used to the frustration of feeling like a burden on my loved ones and putting limitations on the people I am with.

And then two months ago, my boyfriend hurt his back at work. He’s a chippy and he doesn’t know exactly what he did but while I was overseas for work he suddenly became bed-ridden.

I came home exhausted from a media trip to Vanuatu, feeling on the edge of a flare as I always do after a work trip and ready to crawl into bed for a Sunday of sleep before going back to work on Monday. But as I walked in the door and saw the mess and found him still in bed at midday I knew that the tables had turned and this was not a dull back ache.

I mentally picked myself up and cleared up the house, put on a load of washing and began thinking about whether we had food in the house for dinner. I thought – he has nursed me through some bad flares and general day to day MCTD miserableness, this is my turn to care for him.

Two months later, he is still off work, can only walk for short periods at a time and is only showing very slow signs of progress. He is feeling down and bored and struggling to see the light at the end of the tunnel. We know he will get better, we just don’t know when. And in the meantime, I try and hide my own pain, which thankfully right now is not too bad, and concentrate on giving him the understanding he needs that endless doctors, constant pain and restricted freedom is the worst and just as he will continue to hold my hand through a lifetime of MCTD, I will hold his hand through this…and whatever else life throws at us.

How MCTD has made me feel like a 14 year old boy

A couple of weeks ago, I was having a conversation and out of nowhere, my voice cracked. It squeaked. It reminded me of high-school when the boys voices all started breaking and we all politely ignored it but noticed it all the same.

The first couple of times I laughed and said ‘What was that!?’ but now it’s been happening more regularly. As in a few times a day. There is no sign. I don’t have a sore throat. My voice is not hoarse – I know that that is a common MCTD symptom – it just keeps giving out.

I am very interested to hear from anyone else with MCTD, lupus or any of the related illnesses about whether you’ve had this symptom before. Of course I’ve been googling but it’s not showing up as a regular MCTD symptom.

However – as those of us with this delightful disease know, medical sites hardly delve into the reality of what it is like living with this and the plethora of effects it has on our bodies. Forums and blogs are, far and away, the most honest representation of what we are going through.

There is no way a doctor can understand this illness without listening and observing many of us who suffer with this and maybe one day, those websites that give us that tiny list of symptoms will expand and make us feel less alone as each new symptom rears its ugly head.

I’m sick of wondering if everything that happens to me is MCTD related or something different that I should be concerned about.

So I will ask my rheumatologist if he has heard of this before and no doubt he’ll tell me to keep an eye on it and then if it gets really bad I will be put in for copious amount of tests that will confirm that it likely is a part of the illness, but noone can really be sure.

So! Let’s avoid this and if you’ve had this – write to me and hopefully if someone searches MCTD and voice cracking, they will come across this and know they are not alone.

It’s all we can really do.

XX

20/4/14 Just wanted to update on this as it has been ongoing and my rheumy said he did not believe it was part of my MCTD and sent me to see an Ears Nose Throat specialist. After a particularly uncomfortable appointment which involved a long thin camera up my nose and down my throat, the doc said he believes it’s a cyst on my throat that will need to be removed. It is not related to my MCTD. I thought I had better update this so others are aware of how this worked out. – Naomi

An overdue catch up on my MCTD status

I’m sorry. It’s been way too long since I’ve written and I’ve had a few people contact me asking me how I am as they haven’t been able to follow along at home by reading my blog. I know it’s been a long time. There are contributing factors. Laziness, is right up there.

But for the first half of the year, there was a lot going on with my family, that for me and I hope all of us, my MCTD became pushed aside and lost its importance and prevalence. Of course for me it was still there but I didn’t feel I had a right to talk about it when others were going through much worse. 

So, we’re almost in October 2013. It’s been a big year. I turned 30. My boyfriend and I moved in together and I got off the prednisolone. 

You might remember that prednisolone was my saving grace back in early 2010 when it got me moving again. When, about 6 hours after I took it I could stand without assistance and minimal pain, I could sleep without searing pain in my shoulders waking me up and I started to no longer see MCTD as a life sentence. 

I think it was because of this, that it was so hard to give up. While my rheumy told me that he never wanted me on it forever and that the plaquenil and methotrexate is meant to work without the need for prednisolone, I just couldn’t believe that I would function without it.

But slowly, so slowly, I eased down from the measly 5mg I was on, half a milligram at a time. I got stuck on 2.5 for ages. Every time I went down to 2 I had a flare and it just didn’t feel worth the pain to get off it. 

But then I knew, I wanted to be off it before my 30th birthday, so I persevered, dealt with regular pain and then one day, I stopped taking that last half and I was off it.

I do notice a difference. That original pain I got in my shoulders when I first got sick, returned and now wakes me up from time to time. It means I take more codeine to kill the pain than I used to but I try to only use it when the pain is really bad.

Yoga

And apparently, one way to make the pain really bad….is yoga.

For years, people have told me that yoga is something I should try that they think it would be good for me when there is so much exercise I can’t do. I pushed back, sure that holding my arms up and doing downward dog would be too hard on my wrists and I would be mortified when I couldn’t move from one position to another. But eventually, the opportunity arose to go with my sister to a small class where her friend, who I knew, was the instructor. I felt it was a safe space and I could tell the friend my limitations and just do what I could.

Well, I quite enjoyed it. Especially the meditation at the end, I didn’t lean on my wrists, just leaning on my fore-arms and with my sister by my side I just giggled with her when I was doing a pose totally wrong. I felt so thrilled when I finished and was so excited that I had been wrong and that maybe I was going to become a yoga queen.

Then, as night fell, the pain set in. Excruciating, un-escape-able pain in my shoulders. I threw down pain killers and my boyfriend tenderly rubbed my shoulders as much as I could bear but nothing would ease the pain.  Now for those who have done yoga, you might be tempted to tell me that after your first few sessions you too were in pain. Trust me. This is different. I had 26 years of knowing what pain after a workout feels like, it feels kind of good and rewarding. There was nothing good about this pain.

So the decision was made. I will not be doing yoga again.

Zumba and walking 

As bizarre as it sounds, while I can’t handle yoga, the high impact dance class of Zumba, I love. I think the reason is I can go as hard as I wish and modify the movements to suit me and there is no judgement, no-one telling you you’re doing it wrong. And the music is fun and I find myself alternating between laughing out loud at how ridiculous I feel and choking back tears that I’m doing real exercise that I enjoy and have fun with. When I’m too sore to Zumba….I try to walk, by getting off at the train station before hand and walking home. Exercise is part of my life again. Sporadically. 

Acupuncture

Another practice I have avoided since I got sick was acupuncture. I just didn’t want another appointment, another doctor cost, another thing that reminded me I was sick. But after giving up prednisolone and having MCTD for nearly 4 years, I thought it would be worth trying something that so many people swear by. There is a niggling pain in my wrist that is really bothering me so I wanted to see if it would, at the very least help that. 

So I went along last Monday for the first time and the acupuncturist came in and looked at my medical history and said with surprise “You have Mixed Connective Tissue Disease? My mother has that!” If I hadn’t been lying down ready to be stuck with pins I would have fell off my chair. I’ve never met anyone who directly knows anyone else with MCTD. Only my rheumy. 

So I felt instantly  more at ease with her as she had an understanding of the disease. I won’t go into details of how the appointment went. I enjoyed it for the most part and will be going back regularly to see if it makes a difference. 

Well, this week it certainly made a difference. It must stir up the toxins, or make things work differently because I’ve been in pain, felt light headed and just sick, all week. While this could be seen to turn me off, I’m curious. What did all these pins or needles or whatever, do to me to have that effect on me? And if she was able to pick up on specific problems with me by taking my pulse…maybe she can do something to fix those problems.

I’ll keep you posted.

…and, are you on any medications?

“Are you on any medications?”

When you’re healthy, when you’re not on any medications, this question is a fast one with an easy answer and you might not even realise how often this question gets asked.

When you have a list of medication as long as your arm, you not only have to reel them off, you also have to spell them. It takes time and it’s embarrassing. You can see them wondering what you have and why you’re filling your body with that much medication, when you look like a normal, healthy young woman.

And so they ask.

When I get a blood test – obviously they ask. I wish they’d keep it on record so I didn’t have to try and remember every time.

When I want to buy pain killers – they ask.

The other day I went to get laser hair removal – they asked. Once I’d reeled off the long list – and I nearly always forget one – I found out that the fact that plaquenil and methotrexate make me sensitive to light stops me from being able to get laser hair removal.

This week I went to the Snowy Mountains for work. A beautiful place, gorgeous scenery and so many exciting outdoor activities from mountain biking, hiking, fishing, horse-riding and of course skiing and snowboarding in the winter (see I’m doing my job at every turn).

However, for someone who has limited capacity for strenuous activity, it is a constant reminder of what I can’t do. Especially when everyone asks you if you mountain bike, if you ski – where does your outdoor passion lie?

I had politely refused a number of activities but when I was told there was a shorter walk from the top of the chair lift up Mt Kosciuszko and that I should definitely do it and they would put me on a tour – I agreed.

So I woke in the morning, and on this day my pain decided to settle in my left hip and my shoulders. I stamped around trying to stretch my hip and get rid of the discomfort, not wanting it as an excuse not to go on the walk.

I rugged up and headed up to sign in.

“…and are you on any medications?” So I explained it all and then went to meet the guide. We jumped on the chairlift and as we sailed over the green slopes I was fighting the tears back. I had been under the impression the walk was around 1.5 hours each way but as I met the guide she said it was 2.5 hours from the top of the chair lift and about 1.5 hours back plus the chair lift ride.

I honestly didn’t know if I had the strength, if I would lose it half way through and what sort of pain I was going to be in the next day. But I just didn’t want to give up or quit without giving it a shot.

Once we got to the top of the chairlift, the wind was so icy and strong. We were walking against it. I looked at the young family with three little kids, I looked at the couple in their sixties and I put my head down and started to push against the wind. I’m 29! I should be able to handle this if they can.

But after about five minutes, the realisation that I would have to do this for more than four hours panicked me. I told the guide I have a chronic illness and that this was more challenging than I’d anticipated. She encouraged me to do the first 2km (of the 13km round trip) and see if I wanted to go on.

I lasted about 1km and then, with my frozen fingers under two pairs of gloves, thanks to Raynaud’s Phenomenon, and my legs already weak from the stress, I turned around and let the wind push me down the mountain.

Under my sunglasses, my borrowed beanie and my scarf, I sobbed my way back to the chairlift and all the way down the hill. Crying with humiliation, crying at my failure, crying at my frustration. Crying because I have to live with Mixed Connective Tissue Disease.

The highs and lows of MCTD meds when travelling

I’m about to head back to Australia after a couple of weeks in New York and New Orleans. This has been my first trip that has a major time zone change – usually my trips are only about two hours difference. This time there has been jetlag and confusion and all the fun that comes with that.

I wasn’t sure what I should do about when to take my medication but decided to take it on Australian time. Which means while I usually take my handful of pills at 7am, I am taking them at 2pm or 3pm in the afternoon, mostly so I will be able to get back into my routine when I get home.

There are a couple of key perks and downfalls of the time change.

Perk one:
Taking steroids in the afternoon means I’ve been able to stay up really late when we hit the town. I’m that friend that usually hits a wall at midnight and needs to go home. Steroids seem to keep me up until 4am – long after jetlag should have worn off.

Downfall one:

Steroids seem to keep me up until 4am. When we aren’t out hitting the town, I’ve lain awake in bed every night, heart racing and thoughts flying about.

Perk two:

I don’t have to wake up and race to find breakfast if I don’t feel like breakfast just to take a handful of pills. I’m ready to go as soon as I get out of bed. It’s easier to have a snack in the afternoon and take medication then.

Downfall two:

I hit a wall around 1pm, start to feel pain that normally is covered by sleep and often got very tired for a few hours in the middle of the day.

Pretty soon I’ll be back Down Under and on my normal schedule but it’s been an interesting experiment. Ah the fascination I find in my MCTD existence.

Learning to share the burden of MCTD

Ever since I started my MCTD blog, people have commented on how brave I am to share my experiences. I haven’t felt it was brave. I have felt as though it has helped me and others with MCTD and my friends and family to know what’s going on – but not brave. I felt I have been able to hide behind my screen and show the parts I wanted to share. The reality is, until a few months ago – I haven’t had to share my MCTD. 

But a few months ago I started a relationship. My first relationship since I fell sick. What’s meant to be an exciting and happy time, has been littered with pain, tears, fevers, doctor’s trips, and many, many days where all we do is sit in-front of the TV, holding hands.

He knew about my MCTD before we got together as we have been friends for many years and he told me he’d read my blog on our first date. A conversation starter.

Mutual friends have assured me that he knew what he was getting into before we started dating but I can’t help thinking – no-one really knows how tiresome a chronic illness is, unless you’re living it every day.

While he has been amazing and patient, and understanding, I do wonder how someone can choose to be involved in this. My family have no choice, my friends get the bad stuff in small doses and I certainly have no escape from my bad health, while here is this guy choosing to    spend his time with me – while it is definitely making his life more difficult. I don’t get it.

I used to read MCTD forums where people spoke of their supportive partners, and I was jealous of the support, thinking I had to handle it all myself. However, now I know that sharing the burden of MCTD has its own challenges. Thinking about how someone else is feeling about how you’re acting or feeling, or how joint plans have to be altered to work around your illness, thinking about how you’re affecting this person – well, it’s not easy.

Having said that – I feel so lucky. While it’s still early days, he’s still here, he’s still making plans with me and he cares. It does make the burden that little bit lighter. 

An unwelcome, Olympic inspiration

Thank God, the Olympics are over. All the running and jumping and swimming and diving – it makes me want to run and jump and swim and dive and that is just incredibly frustrating for a woman with MCTD who used to be active.

I used to play basketball and watching the Opals and some of the other teams, I got all teary, remembering how much I used to love jumping and slapping a shot away from someone shooting. I didn’t care that much for shooting hoops myself, but as long as I could get in someone’s face and frustrate the hell out of them by stopping them from doing anything….well, that was an awesome feeling.

What’s worse is, although I really miss basketball, now I have started craving sports I’ve never played. I REALLY want to play beach volleyball. And not just because I want to look like those women playing beach volleyball, but because it’s a whole lot of jumping and diving and hand/eye coordination. I love that.

Then, I also really want to play tennis. Oh my gosh – can you IMAGINE how badly my body would punish me for swinging my arm around like that for a game of tennis? But I just keep thinking how social it is and how I wouldn’t have to meet my friends at the pub if only I could play more sport. And, you know what? I don’t even think tennis is an Olympic sport!

When you start dwelling on this sort of thing, you can go a little bit too far. I’ve found myself over the last few weeks not only feeling sorry for myself that I can’t play sport, but having that shocking realisation that I will never make it to the Olympics! Never!

Now, I can’t say I’ve ever had any inkling of going to the Olympics or even playing sport professionally but its just another thing I can blame my MCTD on.

People will read my blog and go ‘Did you hear about that poor girl who would have been an Olympian in basketball, volleyball and tennis – if she wasn’t struck down by MCTD. Very sad.’

I know one thing….I could win Olympic Gold in dramatics. 😉

The glamourous travel job – and the excess baggage of MCTD

We’re half way through 2012 and I’ve achieved something I really wanted to – and wasn’t sure if I could. I’ve travelled for work. Over the last couple of months I travelled to Papua New Guinea and Malaysia, accompanying travel journalists while they research their stories.

I knew I was going to be facing some long flights – being cramped and risking aches and pains, strange food that may play havoc with my stomach, incredible heat that could affect my easy-burn skin, thanks to the medications I’m on and essentially the over-riding concern that I might have a flare and not be able to join the group one day.

Apart from the occasional upset stomach in PNG, my health was not an issue at all. I was very exhausted for the week when I got home, but I think this is pretty common when you’re on a work trip.

When I went to Malaysia, I knew I was going to be staying in five star hotels and eating good food so I was feeling confident I was going to be alright.

Of course, the night before I went I noticed my lovely red welts (Erythema nodosum) had come for a visit and by the time I got to Malaysia they were all over my backside, in angry, red bumps.

Now this would be fine, except for the fact that I knew I had a number of massages lined up and I wasn’t sure how I was going to explain to the non-English speaking masseuse that the hideous marks weren’t contagious but they did hurt so don’t touch me there.

I was seen by a doctor before hand and I explained it to him but I’m not sure if the message was conveyed to the therapist properly because there was still that awkward moment when I was lying naked and vulnerable on the table, blushing with shame at my marked body.

I was lucky enough to experience an ayurvedic massage, an Indian style massage with oils that was very luxurious. It somehow did amazing things for my stomach – which had been very upset the day before, and I felt fantastic afterwards. So much so that I’m keen to look for this type of massage in Australia.

When we went out snorkelling, we weren’t offered life-jackets to start with and were swimming off this little island. I swam out for about three minutes and quickly realised I was going to be too exhausted to do this so I swam back to the beach and waited for the others.

Not really a big deal.

One thing that was annoying was having to always drink bottled water. I love my water and have taken it for granted that in Australia you turn on the tap and get drink-able water. I always had to plan my drinking habits and have a whole bottle ready for morning when I take my handful of tablets. It was just something else to think of.

I’m not really complaining. Just reporting. While there were a few things that I noticed, really it wasn’t too bad and I’m pumped and ready for my next trip.

For those who are following at home -that’s New Zealand this week and then Japan to visit my sister in September. 🙂

You are not alone