Wednesday, 8 February 2012

Warning: Emotional Wreck Ahead!

Good Morning Bleeps.

I don't know where to start today, I am completely and utterly hacked off. Yesterday I told you about my great day (the previous day) and how I was able to do lots around the house without feeling tired at all. Well, let me tell you that what the Universe gave me with one hand, it punched me right in the smacker with the other. Yesterday was AWFUL.

I woke up feeling OK, nothing out of the ordinary just the usual feelings of fatigue and some tingling. Then as the morning went on I realised that I was starting to lose feeling in my leg. My left thigh had gone completely numb. It is not unusual for me to have heavy legs with what feels like growing pains (x100) but this was different, something new. I DON'T WANT ANYTHING ELSE NEW! Do you hear me Universe? Stop taking the piss.


Emotionally I was a wreck. My friend Gill phoned to tell me a funny story about her other half. He had told her that her car wasn't reversing and that the clutch had gone. She called the RAC to get help but the mechanic couldn't find anything wrong with the car. It turned out that he had been trying to reverse her car by putting it in 6th gear, what a numpty (he won't live that down for a while). Her story made me chuckle but then as soon as she asked the fatal words of "how are you today", I burst into tears. She listened patiently (as she always does) offering her support but boy did I feel like a pathetic idiot when I got off the phone, why was I letting this thing get to me so much?

I decided to shake it off, take a shower and get over myself. So I had a numb leg, so what, right? No biggie, I can deal with it especially when there are others out there dealing with a lot worse. Man up! I couldn't be bothered to do make-up, style my hair or even shave my legs (not like me at all) so it was sweatpants and a ponytail.

I came downstairs to a phone call from my Mum. More tears. Really? REALLY Karen? For goodness sake woman, why was I not able to keep a lid on my emotions? What the heck? Who was this whack job? MS: 2 - Karen: 0.

I made myself another cup of coffee (because on top of everything I am trying to lose the 10lbs I have put on from comfort eating and so have put myself on a very unhealthy coffee only diet) and tried to shake it off. I faffed around on Twitter (which I have a sudden addiction to) and FaceBook and then my lovely sister called. BAM, round three of crying like a baby. It was starting to get embarrassing now. Seriously chick, pull yourself together. MS: 3 - Karen: 0.

OK that was it, I was all cried out. I was exhausted from it all. I decided to say FUMS, you are not going to beat me.  Was it wine o'clock yet?

I had a diversion in the afternoon when the plumber arrived to fix our downstairs loo. He hadn't been here long when all of a sudden the house was filled a terrible smell. When I went down to investigate he told me how had needed to remove the whole toilet to get to the pipes, the smell of drains was disgusting. Suddenly the smell in the house was matching how I was feeling. Like sh!t.

Phil arrived home and I was telling him about the plumbing and I guess he sensed that all was not well and asked "bad day?" Yup you've guessed it, MORE tears. I broke down for the forth time in one day, pathetic. I told him that I feel like a broken record and that people will stop wanting to call me or talk to me if all I do is cry.

He reassured me, hugged me and was his usual supportive self, rubbing my back as I cried like a fool. I poured myself a rather large glass of wine (sod the liver) and started to relax, the rest of the evening was tear free (probably run out).

This morning I have cried some more. Luckily Phil has left for work but I apologised to Kassidy for being so emotional. She is so supportive and such a sweetheart and she said "Mum, you only got diagnosed in December, this is all still very new. I would think you were weird if you wasn't upset now and then".  She went on to say that this was a life changing thing so of course I will have down days. Down days? I feel like I have had down WEEKS.

I feel angry, resentful and basically pissed of with the world. I really need to find a way to deal with this better, some days I think I am doing really well and then like a wave it hits me and I am back at square one. I am told that this is all part of the grieving process and as trained counsellor I can intellectualise it and recognise it but I don't want to feel it any more.

Maybe I am swinging between the anger, denial and sadness parts of the grieving process. I sure as heck am nowhere near acceptance. I think I will ignore the phone today, it isn't fair to friends and family to keep burdening them with this. It is ME that has MS, not them.

So I guess in a nutshell, MS is kicking my emotional bum at the moment but even though I may be down, I am not OUT.

So enough about me, how are YOU?

11 comments:

  1. I'm right there with you girl! I (Believe) I started this "journey" about 8 years ago. I was diagnosed with fibromyalgia. I believe it was either a misdiagnosis OR I just have MS on top of it. Talking to doctors seem like a waste of time. I have an appt. with a neuro Friday (same one who told me before I didn't have MS because she didn't see lesions on my MRI), now I find out 5% of MS patients don't show lesions, especially when they are using a T1.5 MRI machine! Problem is the only T3 machines in my state (PA) are about 200 miles away! Anyhow, two weeks ago it really started along with all the typical (if there is such a word describing MS) symptoms I've had, I started with vertigo and the "floaty head" feeling. Along with that I have had such terrible pain in my lower back it's brought me to tears at times (and if you would know me, you would know that is NOT a common thing with me)so I went to the doctor...he gave me a muscle relaxer and sent me to PT for the vertigo. Went for 2 days and the third day...WAS WONDERFUL...felt like I hadn't felt in YEARS....normal! So the thought came to my head...am I losing it, could this all be in my head? Well, that question was quickly answered Saturday when it all started again! I have my appt. Friday, been off work the last week and a half, so I sat down yesterday to write out all the symptoms I've been having, because I knew I would forget when I got to the doctors! OMG...can you say...overkill? I couldn't believe what all I had been experiencing until I saw it on paper! Scarey, doesn't even begin to describe the feeling. Frustrated, angry, fed-up, stupid, foolish, incapable, that's just a start. This is particularly bad, when you consider I've always been a head-strong, independent, no-holds-barred type of person. Gentle and caring, but yet, no fear. This whole thing makes you question yourself, your abilities, your whole life! I'm beyond curious as to what will happen on Friday, BUT have made up my mind to be my best advocate...I'm not going to stand for being told I couldn't have MS when I have ALL the symptoms. Wish me luck and I'll let you know what happens. I'm relieved to have found a place I could put my feelings down and hope I haven't ruined your day! Take care of YOU!!!
    Sherri

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    1. You know what Sherri? I hear that a LOT! I have a friend who has been battling for 18 years for an official dx. Also, I have read it is up to 10% of MS sufferers that will have a clear MRI. Not all lesions show, doesnt mean they are not there.

      I have friends with MS who have normal lumbar punctures too. NO test is 100%. You have to FIGHT when it is a neurological disease and it can make you feel like you are losing your mind. Like nobody believes you or like you are exaggerating (why would anyone want to make this up when it is like living hell some days?.

      I am a control freak and an independent woman so I am struggling to deal with an illness that I have no control over. I SO understand what you are going through. You will NEVER ruin my day by sharing and I wish you all the luck in the world. Please keep in touch and let me know how you get on OK?

      Love,
      Karen
      x

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    2. Thanks Karen....will do. So happy to speak with someone who understands this whole mess. I get SO tired of hearing myself think..do you know what I mean....this hurts, that hurts, I feel like a broken record, just as you've said. So, I know if I'm tired of hearing myself....everyone else will get sick of it too. So, what other choice than to try and keep it to yourself. I have a WONDERFUL boyfriend who is trying to understand this, but I am SO AFRAID he'll get tired of dealing with it, so I try to shut up (even though he would never tell me to do so)! Bottom line....I'm scared and COMPLETELY frustrated. The whole thing can be so debilitating. I fully believe I am in the middle of a relapse right now...hoping it ends SOON! Scared I'm gonna get fired (can't afford that) and so completely fatigued I don't feel like doing ANYTHING. Sort of makes you feel worthless, ya know? Sorry to be letting it all go on here, but it does feel good to get it out. I haven't told any of my friends about this because I'm not officially diagnosed (as though an official diagnosis would help), but honestly, I think it would make me feel better....validated anyhow. NO ONE wants to be diagnosed with this disease, but after years of dealing with it on my own..no meds, except for 600mg ibuprofin, I really do think I would "feel" much better with a diagnosis! At least that way I might get the treatment I need. Unbelievable to me how much it takes to "prove" you are in pain, have numbness, can't think, lose your grip, have heat intolerance, fevers and night sweats, muscle spasms, itchiness, extreme fatigue and dizziness! Ughhhhh, so frustrating! Thanks for listening, I DO SO appreciate it. I guess that's part of what I need....to talk to people experiencing the same thing, so I don't feel so alone and annoying, LOL!! I will let you know how I do on Friday! Sherri

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    3. It took over ten years for me to get the DX. I was also young ( 22) So very much is better now then 13 years ago when I got the DX. PA how ever is behind. Do you live close to Maryland? There are great hospitals there. Most in Baltimore.
      Remember you know your own body better then ANY docter. Stand up for yourself with information to back up what you say. Good Luck!!!

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  2. hi karen, so sorry you are having a bad time, it is horrible when the emotions get ahold of you , i am terrible i keep everything in, then all of a sudden POW it attacks,I have clear lumber punctures but i have the leisons on spine and brain,we are new to this diagnosis and new things keep happening, i was told by my ms nurse that the first year is the worst.i hope that you feel bettter soon and listen to your body it knows best so rest when it tells you too.xxxx

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  3. It is still early days for you as your very wise daughter told you. I was diagnosed in Sept 09 and as a nurse I had only seen the very worst end of the scale. So I was planning for my electric wheelchair and stair lift! You need the time to realise it is not the death sentence you first think it is. Once you have gotten thro your first year and realise that you are no worse off that you were before it gets easier. I remember every pain and "new symptom" you automatically think it is the MS. My first year had to be condensed into 2 months cos after I was diagnosed my 9 year old son was daignosed with a benign brain tumour! 2 major surgeries, 7 weeks radiotherapy and the loss of his sight later. I'm still standing some days only just. But I don't have time to think about MS unless it kicks me in the face to remind me. It is at the moment, chronic fatigue after a virus. Take care of yourself and let others too (i know as a mother that is not easy!) xxx

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  4. Hi Karen,
    I hear where you're coming from with all these emotions. I have always been an emotional person anyway and now things get to me even more. I class myself at the moment as living in limbo land. I'm still waiting to be confirmed that I have MS. They are currently 99% sure but not been diagnosed yet. So I feel the anger with that.
    Just want to send hugs to you and thanks for sharing your story. xx

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  5. i was dx'd in september 2010... i still cry... not as often but i still cry. if i think too much... so i try not to think about it... that is so incredibly hard to do - i mean, how does one go about not think of ms when there is tingling, vibrating, achy, wobbly shit going on all the frakin time? I think about it... i just try not to dwell on it.. when i dwell i get sucked in...

    my ms has been stable for 17 months... my symptoms didn't go away but i got used to them and adjusted my day to day life to match them...

    until now... new relapse... and i feel as if i'm starting all over again... all the emotions, all the heartbreak, all the everything... at least i'm not dying yet LOL

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  6. Hang in there Karen. Thinking of you, we all are, as we journey this MS together. Best, Christie

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  7. good luck god bless lots of love xxx thinking of you xxx love lynda x

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  8. Hi Karen :) sounds like you are just starting to get the depression. unfortionaly the majority of us with MS suffer from some form of depression at some point. we tend to withdraw from others, friends, family and loved ones. It will be tough the first couple of years but then you'll see it's not the end of the world. You will be limited only by your own imagination. If you want to do something you've always loved then you can find a way. I believe you'll run again. Cheers Bacon Lover :D

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