Yesterday afternoon I lost my right arm. Not in a "where did you last have it" sort of way but it just went "dead" on me. I kept feeling like I needed to stretch it out or shake it. It felt like someone had filled it with lead and at the same time like ice cold water was being poured up and down inside. This was a new feeling, another symptom to add to the list.
I decided to shove this horrible sensation to the back of my mind because I had arranged to go see my lovely friend for a coffee and catch-up. I excitedly told her about my blog and how I was determined to keep positive and happy. She listened thoughtfully (as she always does) and then she asked me if maybe it hadn't really sunk in. She knows me quite well and can read me like a book most times and she commented that while she thinks it is great that I am keeping my chin up, she wondered if maybe "somewhere" I was still hoping or expecting the doctor to tell me that this was all a big mistake and that I don't really have MS. Rather than tell her she was wrong or off-base, I sat and thought about it for about two whole seconds and then I started to cry.
Today I have woken up (after another night of tossing, turning and hardly any sleep) with my arm still heavy like lead. I am seeing my Neurologist this morning for the first time since my diagnosis and I am going armed with a list of questions and new symptoms with the hope that he will start me on my treatment.
I don't know the protocol of how this all works, I guess today is the day that I will find out.
So I guess this is a bit of a reality check in as much as I won't always be able to smile on this roller coaster and I will have the occasional pity party (cue music; "it's my party and I'll cry if I want to").
I SO don't want to be a "Donny Downer" as I have had so many people tell me how they admire my positive attitude but I guess I am just a mere mortal after all (boy, is that disappointing to realise) and today I am feeling a bit sorry for myself.
So enough about me, how are YOU?
morning karen
ReplyDeletewe will still admire you on your down days and be here to support you, we are all in this together and although no 2 people suffer the same we all know what down days are like.
i too still wait for the neuro or dr to ring to tell me they have made a big mistake and that i do not have MS but it still has not come yet so sweep the MS under the carpet and carry on with a great big smile thats what we do i was diagnosed sept last year and at first i was so positive my attitude was well least it is not going to kill me but now i find it so hard ti be positive sometimes as my life has changed so much and i would love to wake up one morning with no pain and no tingling ect...... i love reading your blog and even the down days i will continue to read them cause i can relate to that too heres hoping your arm gets some life back in it soon xxxx
Thank you so much Sandra - what a ride eh? I think I prefer the ones at Thorpe Park and Alton Towers to be honest. It is nice to have people like yourself that can relate and it is really nice for me to have that feedback too (moreso on days like today). Hope you have a pain/tingle/numbness/dizzy free day ;) xxxxxxx
ReplyDeleteReading your blog everyday is so therapeutic for me. I never actually cried about having MS until I started reading your blog. Your blog is always so positive, but it's like you are putting my feelings into words. I'm finding that it's easy to be super positive when I feel great, but when something goes randomly wrong.... not so much. Keep on blogging!
ReplyDeleteThank you so much (although I am sorry that my blog made you cry). I guess sometimes we bottle it all up and then when someone says (or writes) something that we can relate to, we "allow" ourselves our feelings to come out. I am glad you are enjoying the blog as much as I am enjoying writing it. x
ReplyDeleteIt's ok to be sad. It's a scary, unpredictable illness. Your words paint you as a strong, intelligent woman. MS has nothing on you! Tomorrow pick yourself up by your bootstraps & soldier on. Hoping all goes well with your neuro.
ReplyDeleteAww,Karen!
ReplyDeleteYou are so very new to this and you remind me of myself when I was newly diagnosed. It can be therapeutic to put on a "brave face" and crack jokes, but it can also be a way to disguise your fears. And, keep in mind, MS is really good at playing head-games. Pity-parties are typical of the depression brought on by symptoms, side-effects of meds, and lesions themselves. I have a Blog as well, you might want to check it out! multiplesclerosis-buddhism.com. Don't worry...I won't convert you! It is just a simple philosophy that has helped me tremendously!
oh hun..wish i could see u to give u a HUGE HUG!!but i send one thru the airwaves....you are human, and though i cannot even begin to imagine how/what your feeling, all i can say you bloomin let go of them tears when ever you want to!!...and yes i know your only human,
ReplyDelete(but sent from the planet Rydell High),im still in awe of you, and your courage...
lots of love sent to you
xxx
MsMama23,
ReplyDeleteThank you for your message, your words of support help so much. My Neuro appointment was awful and a step backwards but I will keep on keeping on. :)
xx
Thanks Dawn,
ReplyDeleteI will check out your blog - willing to read or listen to anything that can help me through this process. I appreciate your support and message.
xx
Cazzie baby - you are one of my dearest friends and I love you so much for all of your kindness and support. I am starting to feel a bit guilty that I wouldnt ever let you be Sandy hahaha xxxx
ReplyDeleteIf we didn't feel sorry for ourselves once in a while, I truly believe that we would eventually be up a bell tower shooting at the "healthy ones." You can only laugh for so long until it sinks in that you really are sick. Every one needs a good pity party, just don't forget the pint of ice cream and that person who won't judge you.
ReplyDelete