What if life is no dress rehearsal? What if this really is as good as it gets.
We will never look younger – than we do today. If over, say 20, we will never be faster, stronger than we are today. At 4? and happily married, I will never have young love again, and with breeding now behind me, will never hold my own new born again.
So what? With age comes a certain confidence. With knock downs and knock backs comes a certain resilience.
So what if today is the best day of the rest of my life. I am going to continue to live life to the fullest, and accept the consequences if MS kicks me in the face (or eyes, as is more likely).
Appreciate the moments with my husband. Be spontaneous. Not put off doing things until next month, next year or when the kids leave home. It isn’t easy, but I will accept one date night at a time.
I will continue with uni. (For as long as I have the energy and reduce my expectations to a pass is a pass)
Kids come first. I will find joy in doing the things with them I will no longer take for granted. Reading, playing tennis (even if I can no longer hit the backhand) and just joyful stuff.
i will apply for that job. Even if it will mean pressure and stress. I have my ambition, and MS. There may come a time when the career becomes a job and then the job becomes a memory. But that day isn’t today. And today I have a positive attitude. (And a job application to write)
Can you be half in the MS closet? Once you poke a toe out does the whole leg have to follow?
In the 2 months since diagnosis, I have selectively come out. But it is scary. And irreversible. So, who did I tell and why? More importantly who haven’t I told and why not.
Husband, parents, mother in law. Easy choices. Not easy conversations. Manager and one coworker – manager was inevitable. I couldn’t hide the relapse, nor what it meant in terms of tests and diagnosis. She was understanding, but couldn’t understand why my head wasn’t in the game over other past few months. Coworker is important to have a sane shoulder at work. That said, I now have a new job starting in 2 weeks. My choice. Sad but I needed a change and someone who wouldn’t know or could at least ‘forgive’ me my foggy brain or self indulgent thoughts.
A couple of key members from committees that I was active in until diagnosis antithe decision to pull back. Nothing but understanding and support. I owed them the truth. They accepted my decision to pull back.
My best friend. I waited until I was in a good headspace. I was positive so was she. A little disappointed she hasn’t been in touch since. Busy mum.
it is easier to tell those with their own shit. There is genuine understanding. Honesty.
Facebook is a no go area. Twitter is anonymous, but cautious. School parents, absolutely not.
Kids, not yet. At 8-14 they are too young to understand the concept of a degenerative disease. We will tell them mummy isn’t feeling well when that is the truth.
So, my toe is out but I am not. Will this work?
Have you noticed all the MS drug pamphlets have pictures of happy, smiling people? Not a word about what diagnosis is does to your headspace, or ability to sleep.
Yesterday I went to work on 3 hours sleep. It was a hard day at work, foggy brain and tired. normally my insomnia starts at 2 or 3 and then I fall back asleep around 5. But yesterday was not my day. No back to sleep for me. And of course, every symptom is a MS symptom, right? The insomnia, the foggy brain. All warning sights, right?
last night, really tired I went to bed at 9.30. So tired, surely it will be a good night sleep. Not for me. Awake from 4 and now again so tired and even shaking from being tired.
Is insomnia one of those optional extras we get as a bonus with MS? Or is it just a short term bonus while newly diagnosed come to terms with it?
In 1998 when I had my first episode of optical neuritis, the brand new husband was beside me. He heard the ‘maybe, one day, this will be MS’ message, but has had the attitude that we will deal with it, together, if and when.
But with a diagnosis in January 2013, who to tell, when and how. We live in a city, but it feels like a small town. Once news gets out, anyone could find out. But DH mum deserves to know, as do my parents.
DH mum came to dinner. When kids were outside, DH broke that we had been through an interesting couple of weeks. I had lost sight, we had tests, and we have a diagnosis which is good because now we know. And, we aren’t going to tell the kids. Her reaction was shock, but supportive. Since then she has done the same level of research as we have. And of course she has stories of someone who had it years ago and it destroyed their life.
My parents live interstate. I rang and insisted mum get dad on the extension so I could tell them something together.
i have had to support them. Be strong for them. Explain that it isn’t a death sentence, in fact nothing really has changed other than a shadow in my life has become real. From other blogs, I was a little prepared, but it is hard. In a way I want to go crying to mummy and Abel her to make the hurty go away. But I am having to be strong and positive. For them. Is this the way it will always be? Brave face? What is hard, is when she rang for my child’s birthday, she wanted to know if I had another attack, was I feeling okay. Trying to explain that I have a good version, and it could be months or years till the next relapse is hard.
Part of me now thinks they both see me as a label. Defective daughter in law and disabled daughter.
A shadow has hung over me for 15 years. Optical neuritis = MS. Visions of life in a wheelchair, blind. Completely dependent on others. But no definite diagnosis. Just a maybe, one day. Every headache, every pins and needles, every twinge and every night of insomnia – is this the beginning of the end.
On 3 January 2013 I lost vision in one eye. More like blurry vision – looking through a soap sudded shower screen. I couldn’t see the flashing red Christmas lights. I lived on panadol. After ignoring for a week, went to GP, referred to eye clinic, referred to MRI, given diagnosis by GP, referred to neurologist, sent for spinal tap, referred to MS Australia to find out medical and support options, back to GP for a health plan and a mental health plan, back to neuro.
It is now March and I am coming to terms with MS and RRMS. I am ashamed to tell people and those I have had different reactions, most of which I have needed to be the strong one. Managing their reactions. Giving them comfort.
so this blog is my headspace. It won’t be pretty, but it will be honest. If you are reading, likely you have your own journey. So I welcome your feedback links between our own blogs. Each of us have to travel alone, but that doesn’t mean we have to be alone.