The Definition of a Chronic Illness

October 31, 2010

Tomorrow is November, I’ve had mixed connective tissue disease for a year and I’m having one of those moments when I understand the meaning of a chronic illness and I am SO over it.

You know those mornings when you wake up and check your symptoms for the day, take your drugs for the day and then make the mistake of reflecting on the last few weeks or months and how it’s just always BEEN THERE. In the background, or the foreground but you’re just still sick.

I need to go to the doctor to confirm but I’m pretty sure another annoying symptom has joined the team. It’s a bit embarrassing and I’m not ready to share but it’s just made me go…

“Are you SERIOUS??? How much more can I take? Just stop it already, seriously, I’ve had enough.”

One year of being sick constantly but then I put it into perspective and go, oh that’s right, I’ve got this for life, so one year is nothing in the scheme of things. Yes ok, I’m having a rant today but I’m allowed because generally I’m pretty positive about it all but, you know what? This SUCKS!

I’ve been seeing a counsellor, and she has been good. I’m easing off with her now because I was feeling pretty on top of everything but one of the the things she made me see was that I have been going through a grief period.

Grief for the loss of lifestyle and mobility and control of how  my body will feel day in and day out. I miss basketball terribly and have told myself that if I go into remission I will find a team to join again because I just miss the running and jumping and shooting and defending. I MISS it.

I also learnt that it is ok for me to feel sad about all of this. I kept telling myself that so many people are worse off than me that I don’t deserve to feel upset or get sympathy but my counsellor pointed out…at what point does somebody deserve to feel sad about something in their life? What is the scale and where am I on that scale, why shouldn’t I be upset?

I still find that hard to deal with and can’t believe how much guilt I feel about the fact that people feel sorry for me and make allowances for me. Does anyone else feel this guilt? I feel guilty writing this post and being a bit angry today but this is the point of the blog…to share.

Anyone else want to rant? Please join me, even if you don’t think it’s worth a rant but you have something wrong you want to share…spill it. Misery loves company.

Princess Naomi x


4 Responses to “The Definition of a Chronic Illness”

  1. Let me just assure you that just because you can think of people who have worse things, that doesn’t make YOUR thing an EASY thing. If it helps with perspective, great – but if it makes you feel guilty for feeling the weight of your own hardship, then please, give yourself a break 🙂

    And grief? Yes. But as you’ve probably learned, grieving isn’t linear. We don’t go neatly from step 1 to 2 …etc. So if/when you find yourself feeling like you are revisiting a summit you’ve already climbed, it’s normal – honest – normal.

    May healing and peace be yours.

  2. Bev said

    hey there princess naomi – just wanted to give you some permission (not that you need anyone’s permisssion of course) to go ahead and be pissed off. best thing about being angry, is that it is “depression with energy”. having any energy is always a good sign – so, go for it, i say? and, is one of the steps of grief, not that you have to progress all through these steps? fingers crossed you will go into remission SOOOOON, and you won’t need this trip?

    i know i grieved the loss of the old me, and still do at times. but, the new me is ok, so… and, i know, especially in the early times, i also felt a host of emotional reactions, with the most dominant one, feeling that my body was letting me down. that it betrayed me. “how could i do that to me?” ran around in my head a lot. and so some of my anger was at me, for not being trustworthy? of course, none of that made any sense on a conscious level, but, my sub-conscious wasn’t paying too much attention to that – it had a little mind set up all of it’s own, and lurked around, sneaking up on my conscious when it was otherwise busy and wasn’t paying close enough attention. and would get in the control seat? nowadays, i mostly accept where i’m at with the physical limitations that i’ve been left with, and keep busy doing heaps of stuff, that might not be in the same league as i once would’ve done, but, nevertheless, is still having a life, and so i don’t have time to think about it? but, it takes TIME to get to there? and, how much time, depends on the individual snowflake? and, because we’re all individual, you’re allowed to make up whatever you like, as you go along, on the day, on the moment. so, girl, you rant whenever you want or need!!

    and, wishing you bucketloads of all the good stuff……….. bev.

    ps i started cataloguing my “journey” to send to you via your ma’s email, and went at it with great enthusiasm for hours and hours, then, left it. when i went back to read what i’d written, i felt a bit confronted/overwhelmed, and haven’t as yet edited it? but, for sure, i’ll get onto it this week, as i’m feeling up for it? and, hope it will help/be of use? :o)

  3. Julie said

    First time here and just diagnoised with MCTD. I have had fibro for the last 24 years but the last 2 years have been different, the pain is different, actually almost intolerable at times.I finally told the doctor something just isn’t right, its not the same as the fibro. Suddenly after a day of sun in the spring, a terrible rash appeared on my arms, neck and back, welts, scabs, redness and it itched like crazy. So the bloodwork and biopsies begin. First they thought it was my thyroid cause my TSH was almost 0 and the scan showed large nodules. I was so excited that I would FINALLY feel better. NOT! I just kept getting worse and worse, strange symptoms, tested for Lupus, titre not high enough. Now 2 weeks ago, extremely high RNP in my blood. I live in a very small town in Montana, one doctor. He called another doctor to ask about the strange high RNP, thus my life of MCTD begins, or at least I got a firm diagnosis. GREAT, now what…. I am extremely angry right now, knowing the REAL me wil never be back… I used to be so fun and happy now at this point I only feel extreme sadness.

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