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It's a thief!

Jan 08, 2016 - 7 comments

And it just keeps taking!

It's taken away my balance, it's taken away strength, it's taken away muscle, it's taken away my energy, it's taken away my appetite, it's taken away my hobby, it's taken away my joy, it's taken away my money, it's taken away my optimism , it's taken from my children, it's taken from my husband, it's taken away my social life, it's taken away my patience, it's taken away my hope, it's taken away my goals,  it's taken away my confidence, it's taken away my laughter, it's taken away 19 months, it takes more and more each day,  it's taken away who I am....and I AM STILL NOT DIAGNOSED!!!  

Frustrated, and exhausted, and hopeless.

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12080135 tn?1453627571
by ConfirmedRachel, Jan 08, 2016
Aw Hun, get it off your chest. I've had days like this and I'm not sure having it named/diagnosed is so good either - that's not totally true as I also know how rubbish it is when you're waiting to hear as you still are. What I mean is naming it somehow gives it power if you let it. I get so furious some days when my memory and recall has played me up for the 20th or 30th time that day. I also think about if my husband could possibly still want to stay with me knowing I have MS, whether it will affect what I can do or should do with my job etc etc. I get cross when people say "oh I do that too, all the time" I even had one say she thought she should get checked out because she's "quite forgetful" too - infuriating!!

So you see, everything you've said above is true in parts for all of us in this horrible place - however, you are more powerful! Really, you are. You are Wonder Woman, you have four amazing beautiful children that you care for every day - they still make you laugh and give you joy and pride I'm sure, you have a loving husband and family, you have friends both close and virtual who will help you reach whatever dreams and goals you decide. Some may need to be tweaked but you might also get new ones you'd not thought of - because you are alive and can choose them.

The feeling of being out of control is what possibly causes these feelings of stress for you - one way to counter that is to claim that control back. You can do that. You have the authority over your own body and mind, whilst it might rebel and irritate you by not always being well behaved, you are still the'owner' of one amazing body/mind!

Put your princess frock back on and have a tea party with your daughter and her teddies, go to the park with your boys and watch them charge about the way only boys know how, go on a picnic to the beach or the countryside with your family and just sit and watch the world - you're still part of it. Let your worries float off your shoulders and pretend you're looking at life through the wonder of a child's eye - there is still so much more out there for you, simple pleasures.

It's human to feel exhausted by everything going on, but it's also ok to take a small step to one side, breathe and take stock of what is really really important in your life and then embrace it.
Sending you loads of love and understanding xxx

15288417 tn?1446902183
by TLC1104, Jan 08, 2016
I'm right there with you,  this is exactly how I've been feeling at the moment.  
The thing I'm trying to think though is that working through all the frustration, anxiety & everything else  I'll get to know how to deal with it all........'New Normal' as it's said       (That's what I'm hoping for anyway)
It's still very new & raw for me as with you,  we'll get there!!
stay strong & take care of yourself.

987762 tn?1331027953
by supermum_ms, Jan 09, 2016
I hear you **HUGS**

The truth and nothing but the truth - diagnosis isn't all that you're expecting it to be.....diagnosis of a neurological condition like MS will not give back measurable clinical losses!

In the many years of working with parents of children with disabilities, one thing that always seemed tragic to me was the expectation of the diagnosis ending all their struggles and providing all the answers. No matter the diagnosis, it is never the answer, it's often only just the beginning of the work that is necessary to make important changes. It's a destructive waste to wait until you have a label before you recognise you need to work on changing what you can, whilst accepting what you can't do diddle squat about...

My first thought on reading your journal was "oh crap babe, your head space is the biggest issue in this moment" I truly hope you recognise your head space is screaming and your mental health must be your priority above anything else! Without a healthy head space, the battle is a million times harder than the reality of any situation. Acknowledging depressive mental health doesn't make anything less true, doesn't solve all your problems either but believe me it will only get harder if you don't recognise this journal as a cry for help and speak to your doctor......NOW!  

Truth - who you are is woven within the fabric of your mind....change your tomorrows babe, look after your mental health...



5112396 tn?1378017983
by immisceo, Jan 09, 2016
I can only echo what JJ says. Maintaining a healthy headspace is paramount for me, and is a far bigger challenge than my MS. If it's not taken care of, every single additional challenge in my life is 10x more difficult. You're clearly dealing with mental health struggles in addition to your physical issues. There is help available, and most of us have times we'll need to avail of this help. I hope you'll speak to your medical team about this. You don't deserve to feel like this.

5265383 tn?1483808356
by aspen2, Jan 09, 2016
I have your back, chickie!!!!  I so get where you are.  Agree with those above ... you need to talk with someone, preferably a counselor who specializes in chronic illness.

I also have a lot of losses ... and yes it's a struggle to find a new balance and place (one I win or lose depending on the day, phases of the moon, or what my body is up to.)

I work very hard at finding things to be thankful for. Try this yourself.  If you truly can't, right now, sit down and make a short list of those things -- because they ARE there -- then you need help sooner not later.

I agree with you in one way -- I do think an answer "might" help our focus.  And certainly, if we DON'T end up with ms perhaps there will be an actual treatment.    However it won't necessarily change the losses. in absence of something with no real treatment.

There is a 6 week program called Living Well with Chronic Illness, out of Stanford University.  It's used all over North America.  I highly recommend it.  Perhaps you could ask your pcp if it is delivered locally?


11079760 tn?1483386130
by cjtmn, Jan 10, 2016
I have no magic wand or healing words of wisdom. I am just sending you loads of support across cyberspace. For what it's worth, I have been fighting taking antidepressants for the last year, I decided this weekend to stop fighting it. Maybe it's time for both of us to regain some joy. It changes nothing physically, but it could indeed change everything for us and for our families.


9745005 tn?1410044366
by 4happygnomes, Jan 10, 2016
Thank you all for your thoughts and empathy.  True, I'm feeling depressed, but even more so...I'm angry!  "This" has gotten so incredibly bad, so fast.  I am having great difficulty walking, even around my left leg is shot, hardly any muscle left in the calf, the leg is a whole inch smaller in diameter  than the right now.  And if the walking isn't enough, the dizziness is beyond challenging. And then, of course the other symptoms.    I had my follow up neuro appointment last week from my clean brain mri...he suggested that maybe I should use a wheelchair.  I told him how insane that sounds, I need to use a device when I don't have a incredibly messed up is that? I understand what you are saying Super_Mum, but it is surreal.  

I also told him straight out that I think this is ppms...he said he doesn't think so.  With every "nomal" test result I get, it is becoming clearer to me that is what I am dealing with.  I wish I would have asked him WHY he doesn't think this is MS?  It is maddening.  I know a diagnosis isn't going to fix anything, I will never be the same as before.  

The domino effect of what I'm dealing with is huge, and although I can appreciate the benefit to seeing someone to "talk it out", I can not pull any more money from our account for a good cry, a pat on the back, and telling me to work thru it as I limp back out and still have my reality.   Sorry if that sounds trite.  Perhaps I will look into some books from the library that can help me work thru this, I do understand that the mind is powerful and the negative thoughts are damaging.  I'm a stay at home mom (I would be fired by now if I actually had a job), I don't qualify for disability, the money tree is bare.    I need to figure out how to pay for help with my kids, the guilt of how this is affecting them is tremendous!  I keep my mood in check when I'm around them, but their world has gotten so small and they are missing out on life.

Thank you again, I appreciate you listening.  I wish you all good days!

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