Two Years on Tysabri

Last week I saw my neurologist as I had recently had my annual MRI.


I didn't feel compelled to collect a copy of the report before seeing him, as I usually would. I didn't need to prepare myself, as I feel great on Tysabri.


With my whole family in tow, we enter my neuro's office; we exchange pleasantries and sit down. He smiles and tells me everything is great. No new lesions, no activity. This was not unexpected news. It would have been unexpected for him to tell me there was inflammation and new lesions.


My question to him was, so how long have I been on Tysabri? Two years he says... That is two years with no activity, two years of it being like I don't have MS. Luckily for me I am JVC negative, so I don't need to think about changing medications, or the possible consequences of staying on Tysabri after two years. I suffer no side effects... I remember after the first infusion I was exhausted, but in hindsight this may have been the result of the worry and the what if's. I'd always told myself in the early years after Tysabri’s release that I would never consider Tysabri, due to the deaths of people on it. However after several years, new research on hand - a more complete evidence base and being JVC negative I took the plunge.


It's a bit strange trusting a medication... to trust it is working and working day in day out, with really no way to monitor it, except for the annual MRI and no new symptoms. All I have to do is show up once a month and offer up my hand. I don't do anything. It's all rather passive... Which is not really my style, but hey, there are worse ways to spend three hours!


Interestingly my neuro mentioned that there are, give or take, 250 people in Western Australia who show up once a month be infused with Tysabri. I hope it works for all of them as well as it does for me. (I wonder if they have trust issues?) Sometimes in the first months, people can develop anti-bodies to Tysabri and have to stop, which would be sad and frustrating. I would love to hear from anyone who developed anti-bodies, leave me a comment please.


At my neurologist’s initiation, the rest of my consultation was spent talking about The Lego Movie, and how it is not just good for kids. I didn't need to ask questions about alternative medications, the what if's regarding medication efficacy or new symptoms - so what else was there to discuss!

Hope you are well xx

Friendships.

What does friendship mean to you?

Dictionary.com suggests this: the state of being a friend; association as friends: to value a person's friendship or a friendly relation or intimacy.

So then I looked at what the definition was for friend, which turns out is: a person known well to another and regarded with liking, affection, and loyalty.

I’ve been examining what friendship means lately.

Friendship is the hardest thing in the world to explain. It’s not something you learn in school. But if you haven’t learned the meaning of friendship, you really haven’t learned anything. – Muhammad Ali

I know I am not always a “good” friend. Weeks and months can go by without me being in contact with my friends. It’s not that I consider my friends undeserving of my time, rather for me as it is others, you get wrapped up in your own life, your own commitments with your family, with your job, with your studies, with your stresses. I think about my friends regularly and often feel guilty about the time that passes between catch ups. When I do, I do something about it to acknowledge a friend’s presence in my life... call, meet, message, like a post on Facebook or send them some good vibes. I think what most of my friends know about me is that if they are having a shit time, I will be there for them... to listen intently over the phone or in person, to hold their confidences, to run errands, to watch the kids, whatever...

I understand this is what my friends offer me too, even though I am not always willing to receive it.

The lovely thing with friends is that you can leave off where you were the last time you met, with a hug, smile, kiss on the cheek and an acknowledgement of the time that has passed since you last saw each other. You chat about what has been happening with the other and yourself as if no time has passed at all. I think this is possible because the last time you left your friend, you left them with an inherent understanding that they are valuable to you, that you respect the time they have given you (and vice versa), that you have genuinely tried to understand them and you love them even when you may not see eye to eye. You leave with a mutual knowing that they have positive regard for you and you for them.

I have a friend that is having a tough time right now. I have given her a lot of time for the last year, but have known her much longer than this. Undoubtedly there has been something in this friendship for me too, otherwise it wouldn’t have endured. But I currently find myself dropped like a hot potato and I’m not really sure what to do or what it means. It's perplexing. The friendship has gone from full tilt to almost nothing and by almost nothing I mean if I am not driving it, it is not happening. We’ve talked and I’ve sent texts... the message is always the same, yes we are friends. But there is nothing else to say that we are – nothing that backs it up. No meetings, no invitations, no calls, no messages, no Facebook likes... zilch.

I ask myself why I bother or what I have done wrong. I bother because I value this person. She was a big part of my life for a long time. I bother because she enhances my life. I bother because I thought we understood each other. Perhaps I was mistaken. Maybe I did something wrong. Maybe I have been trying too hard, maybe she is too busy (to hit a like button??), maybe having me as a friend is no longer convenient or fits in with her life now. Maybe she thinks I am oblivious and won’t notice seemingly deliberate acts of omission.

For a while I felt abandoned, but a little time helps that pass. I do feel used, but this is a result of being overlooked and ignored. Now mostly I feel sad, because my friend is no longer my friend and I am having to second guess myself and my actions in relation to her. None of her actions and choices make me feel secure in our friendship. When I last saw her, she talked about herself, while I patiently listened. She was unaware that anything was amiss, or chose to ignore it. Then she ushered me out the door because she was busy. This is not normally a problem, except that I didn’t leave with an inherent understanding that I am valuable to her, she didn’t try to connect with me. That and she seems to be ushering me out a lot these days. I feel no positive regard.

And I have treated this person time and again with liking, affection and loyalty.

Perhaps one day we will talk and she will say, oh I just didn’t think about my actions. Sure it’s an explanation - closer to an excuse, but not a good one and not a believable one. Maybe she doesn’t consider me a friend anymore and just hopes I will go away, which is rather passive and hurtful.

Anyways. What I put out to the cosmos for this person is happiness, understanding and gratitude. What will be, will be... 

Out to the universe.

Be happy, be safe, be well.  

You've Got This.

Healthline just launched a video campaign for MS called "You've Got This" where individuals living with MS can record a short video to give hope and inspiration those recently diagnosed with MS.

I've been approached to share this website and am really happy to do so... because being diagnosed with MS is a BIG deal. It is usually a time when you think the worst. And like me (at the time of diagnosis), you may not know anyone else with MS, which means it is easier to think the worst.

So please check out the videos here at You've Got This.

Best wishes!