Saturday, 4 January 2014

Resources for MCTD

Mum's Crazy Tiredness Disease

That's the acronym I made up to help my children remember the name of my medical condition Mixed Connective Tissue Disease or MCTD for short. 

Out of the myriad symptoms and problems caused by MCTD one of the most frustrating and disabling is overwhelming fatigue that can hit suddenly, without warning and lay me out for hours and days at a time. But that's not the main reason for the funny acronym however apt.
In the event that the ambulance needs to be called, it is important that those around me are able to tell the paramedics my correct diagnosis.
When the MCTD is at its worst, I turn into a rag doll, too weak and exhausted to move, talk or even breathe properly.  It is imperative that the treating medical officers know because the symptoms can be misdiagnosed easily and any confusion or delay in receiving the correct treatment could cost me my life.
This fortnight, I discovered a great Australian blog by a fellow MCTD sufferer.  Her name is Naomi and her blog "MCTD–The truth, the challenge, the hope" journals her experience as she lives with MCTD. 
I love this blog because she articulates precisely the concerns and consequences of life with MCTD. The sentiments echoed in her readers' comments also have me nodding in agreeance as I recognise my own experience in everyone' s contributions.
When I was first diagnosed, there wasn't a lot of information available about MCTD. Naomi's blog certainly did not exist at that time.
Medical information can tell you the kinds of symptoms you may get but it won't tell you how to cope on a daily basis, how it will make you feel and it doesn't warn you of the full effects on one's lifestyle. Advice from doctors (if they are even aware of the condition) tends to be generalised, sketchy and noncommittal.
To find someone else who truly knows what it is like, who can articulate the emotional, physical and social challenges so eloquently, is heartening. 
I now know that it isn't "just me", that as much as MCTD can affect individuals differently, there are many common features shared by MCTD sufferers. I can now see that what I am going through is absolutely 'normal' for anyone with this diagnosis.
The only way to recognise this is to compare notes with others going through the same struggles. For the first time, I have found this in Naomi's blog.
May I therefore direct you to "MCTD–The truth, the challenge, the hope" which will give you an insight into my world as much as Naomi’s.
I would really like to make contact with Naomi but the website wouldn't allow me to leave a comment.  I have only ever come across this problem on blogs running on Wordpress.  I am not sure whether it is my browser, my computer screen or a particular Wordpress setting. 
If you can shed any light for me, it would be most appreciated. It would be nice to be able to inform her that I have linked to her blog at least.
Naomi touches on many issues that I could share on Lupey Loops but she does it so well that I highly recommend a visit if you are interested in Mixed Connective Tissue Disease. 

Links & Further Information

The links above and more can also be found in the links of:
At Lupey Loops, search for posts with the following labels: addisons, autoimmune disease, fatigue, health, lupus, raynauds, scleroderma, sjögrens, vasculitis.
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