Well I went to the neuro earlier this week. He said tysabri was an option for the future, however he didn't think it was necessary or suitable at this minute. He also said I was doing really well physically (which I know) but he understood that the fatigue was extremely limiting, and therefore lowers my physical ability and that he thought maybe another MRI scan would be worth it just to see what was happening inside, and then see where we go from there.
Although I didn't get exactly what I wanted (as I expected) I did come away happy and reassured that I am being cared for, my treatment is thought about and I am taken seriously. It was also the first time I felt I faced my prof as an adult. I was 17 when I was first referred to him and still at school and so it never occurred to be to discuss anything with him, and certainly not to question him... I'd spent the last 17 years listening to 'adults' (or teachers) and doing what they told me. PLUS my mum insisted on coming to all my drs appointments (yes, that p*ssed me off) so most of the discussions were between doc and mum.
So after 4 years I've eventually prised my mum from my side (she thinks I'm making the wrong decision but she respects my decision... it only took 4 years for me to get there!). However, now she's arguing with me over whether to transfer to Newcastle and stay with the prof, or to stay in Carlisle and get a new neuro... who will be working under the prof anyway! She wants me to go to Newcastle, I still haven't made a decision but leaning towards Carlisle... watch this space! Whatever I do will be my choice, the hard part is drumming into my mums head that I have to make this decision based on what makes me happy, not what makes her happy. After all, this is my illness and its up to me to make the decisions that effect the course of MY life. Have you noticed that once you turn 18 parents stop trying to encourage you to think for yourself, and instead try and take over... because they know that they cant make your choices anymore.... or has that just happened to me because I was diagnosed with MS at 18?
7 comments:
I was your age when I was diagnosed. I suppose I always vowed to 'not be like my parents were', but I have to admit that I'm just as protective over my partner's kids as my parents were over me and yours are over you. I think it's something to do with seeing the danger looming and wanting to protect your kids from it while knowing in your heart that the only way they'll be able to be strong enough to protect themselves is by going through the pain yourselves and learning from it. Easy enough to say but as a 'parent figure' not easy to do. You make a vow with yourself that your kids won't go through the problems that you did, but at the same time you know if you protect them too much they'll be totally ill-equipped to deal with the real world. It's a tough one! I suspect also that our parents feel guilty about what's happened to us. The fact that we don't blame them at all, even that we thrive, and even 'become the amazing women that we can be' seems to be no comfort to them. Good for you for striking out in your own way. I'm sure your mum will let go in time (though it may take decades...).
It's not that I dont understand why my mum has become over-protective to the point of overbearing... but that doesn't make it right. But have you ever tried as 'the child' (a 22 year old child at that) to tell your parents they're wrong (and they are, my counciller told me so, lol ) I love my mum, I really do.... but this isn't her battle and harsh as it sounds, one day she'll be gone and I'll have to carry on without her, therefore i need to follow my own path, not follow hers and then one day be totally lost. I can see things from her point of view, but doesn't she owe me the respect of seeing it from mine?? (and credit to her she is.... slowly!)
Parents do get a lot wrong. It's a tough job with no training! It may go against her 'guide and protect' instinct, and instincts can be really hard to fight! I guess that's just how parents are programmed. Family relationships aren't about who is right and wrong though. They're about finding a way to get along despite all the wrong-doing and ill-judged, well-meaning, over-bearing behaviour. I think you're right, it will be slow, coz she needs to unlearn 40-ish(?) years of behaving that way! The answer for me was to move far away from them. That way they see I can cope perfectly well and this helped them to let go a bit. It's tough being young, but it's also tough being older! ;-)
The Larkin poem sums it up for me.
well,i have just come back from a weeks holiday with my parents....never ever again.Me and my mother argued from dot,as we are quite alike looks wise she expects me to think like her too,everything in the whole world is wrong Aaarrggh and me being me am just so laid back about the world around me and can see evrything in the shades of grey and multi colours that it is.It was like red rag to a bull.She even told me that if I did'nt get off her case then I could leave her caravan abd be banished to my tent hahahah and I am 42 so Candy it carries on even tho you have a head full of grey hair.I love my mum but it just goes to show that in thier eyes we will always be that small child that cannot make thier own decisions.
I know its a tough one candy, luckily my mum and i have managed to find a level that suits us both. I've always distanced myself from my mum from an early age but the hardest part of being diagnosed was telling my family,especially my mum. We tried to do the whole 'getting closer and bonding and supporting' thing, but it just didn't work out. I was trying to deal with it just as much as she was trying to deal with it and at the end of the day we both wanted eachother to see how hard it was. Your mum probably wants you to know how hard it is for her too, and shes probably doing this by trying to do as much as she can for you, only in your eyes its very smoothering. It would drive me crazy if my mum did that to me, but she knows that nothing she says or does can change my mind of something that means a lot to me, especially when it comes down to ms. I'm probably not making any sense so Ill shut up in a minute, i think what im trying to say is that you're a strong person candy and your mother is no fool to this, you're just so prescious to her she cant help it.
i'm glad to know that other people have mother's like mine, i'm 32 and she still won't let me go and see the consultant on my own, even though we get told the same things every 6 months, although sometimes i think it pisses her off cos she thought as she got older i would be doing the running round after her thing and it doesn't look that it will work out like that x all i can say is just let her think she's in control, that's what mother's are there for...then go and do what you want anyway...
let her think she's in control???? are you mad??? i come from a long line of control freaks..... what makes you think i'm any more willing to give up control ;-)
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