What an MCTD flare means to me.

February 9, 2015

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.

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18 Responses to “What an MCTD flare means to me.”

  1. colin said

    Wow! What a terrifying experience. Hope it was just a flare. Live long and prosper. Big hugs from Guernsey xx

  2. Leonie said

    Far out Namoi, you are most certainly the tough chick I knew playing basketball as teens. It’s sucks that we have to translate this courage in sport to focus on survival on what we expected to be a ‘normal’ adulthood. Hang in there buddy, you are going so well to get through each flare. It’s like knowing the bad times, will make the good times so much more precious. It shouldn’t be like that, but we don’t get to choose.
    Thanks for sharing and letting us understand what you go through. It gives perspective, it also makes me want to give you a big hug and make it go away.
    Take care Miss oxoxoxo

  3. I am from the US and was also diagnosed with MCTD. Your description is almost identical to mine. I know it is frustrating and lonely. I’m trying to figure out what I am supposed to do with this because I know this is not all for nothing.
    ~ashley~

    • Hi Ashley, it’s comforting to hear you experience similiar things. Hope you’re doing OK at the moment.
      Naomi

    • Ann Newell said

      Exactly the same experience, the chills and after the chills sleeping all day without wanting or being able to eat. I experienced the chills three times within a month period of time. Your very bones ache. I’m all by myself without help and so it’s even scarier for me. Thanks so much for sharing.

      • Hi Ann. I’m sorry you don’t have someone to share your pain with when it’s at it’s worst. There are great online communities that lend an empathetic ear. xx

  4. jodiebodie said

    How awful for you! I am so sorry to learn that a flare so horrid happened to you. The inability to move from pain is common for me too.
    I can relate to the uncertainty about what might be going on inside the body and the questioning of whether to get further help or whether it is ‘just a flare’ and will subside of its own accord eventually. It is scary because we know the potential complications of mctd and the dangers. For you it is liver, for me it is kidneys, heart and lungs. (Is that chest pain a heart attack starting or just pleurisy again?) I can also relate to your sudden onset of symptoms and the speed of deterioration which is most disconcerting and scary along with the ‘not knowing’.
    It was helpful for me to ask my doctor ‘when to call the ambulance’, to list specific signs and symptoms that would indicate further help is needed, but even then, I sometimes waver because I just don’t want to go to hospital …again!
    Wishing you a speedy recovery. I hope it is measured in days and not weeks. Take care. Hugs to you xx

  5. Amanda said

    Your symptoms only last a day when you have a flare up? Are you currently on any preventative Meds? I’m currently going through a horrible flare up, I’ve been in remission for 3 years and it has gotten worse by the day for the last 4 days! I’m hoping I will get some relief soon!

    • Hi Amanda. Usually two days for a flare. I’m on methotrexate, orudis, plaquenil, nexium, folic acid.

      I do think I have a mild case compared to others.

      • Amanda said

        Wow! Well I’m glad that for your it’s a bit more mild but I know it’s still terrible when a flare up does occur. I’ve only been offered Plaquenil by a Rheumatologist, I’m going to ask them about the other two Meds it looks like you take for this issue.

  6. Stephanie Williamson said

    Hi Naomi, I just wanted to say a huge thank you for writing about your flare. I too have MCTD and have flares just like yours. And reading your blog is just like reading about my own life, even though I’m thousands of miles away in England! I’ve never read anyone describe a flare so brilliantly – so much so that I’ve forwarded your blog to a few close family and friends as it just explains everything so well. So thank you Naomi and I wish you health and happiness. Stay strong 🙂

    • Hi Stephanie, you’re very welcome. I hope you’re doing OK and handling things with your MCTD. You’ve reminded me it’s been a while since I’ve written a post. Will have to do one soon.

      Thanks
      Naomi

  7. Mayra said

    Wow! This is so me… I got diagnosed a few months ago but lived with the pain, swelling, fevers, chills, and fatigue for 2 years before getting diagnosed. Since I had no diagnoses I forced myself to go to work full time everyday. I thought, I have no excuse. I remember sitting in my car with the heater full blast because the chills couldn’t stop and my body in so much pain, I couldn’t walk to my apartment. I would sit there for hours. I was finally diagnosed, first with Lupus then MTCD. It’s been hard. I have like an itchy rash that I can’t seem to pinpoint the cause. I get flares with alcohol, caffeine, and sour candy so I have since then stopped consuming these items. Alcohol was so much easier to give up than coffee. I see it everywhere…

  8. Antonio Gonzales said

    My wife Kelly was diagnosed with MCTD in June 1995, at the age of 24. What you described is exactly what I witness many, many, many times over. The love of my life, Kelly Ann passed away on May 5th this year 2015 at 43 years old. Odd thing is, Kelly did not pass away from her disease. She had a massive brain aneurysm and went very quickly and painlessly. That’s what the doctors say anyway. They didn’t know about all the years of suffering she went through until this point. My love and prayers go out to All of you suffering from this terrible disease. Be Strong and know that there is a reason for this suffering. I don’t understand right now, but I still keep faith in God’s plan for us all.

  9. I have Lupus MCTD Fibromyalgia Thyroid Disease, Raynauds etc. Your above post was so eerily relatable to the symptoms and the emotions and panic/pain I’ve experienced during a flare, especially when I’ve over exerted myself and body for an extended portion of time. Thank you for sharing❤️

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