I've had a lot of stuff happen and pretty quickly over the last couple of weeks so I thought I'd write it down, see if that makes it any clearer.
1)"You may never walk again and even if you do you are likely to be in pain". Funnily enough the thing that hit me most with this was the implications, not the walking itself. Immediately there are 200 things I've got to do: ring Teach First and see if they'll make adaptions for me and even then if they do will I cope with so many hours; start trying to gain some independence back now rather than waiting to get better; talk to the boyfriend, explain that this isn't just a quick fix- I'm making a list of things we won't be able to do anymore so he can make his mind up if disabled girlfriend is right for him. Then its the longer term implications, if I don't come off the meds how will I ever be able to have a baby etc.
2)Trying to get back to Uni. I had a meeting with a disability advisor at university (I had to take a year out when the RSD got bad) and there are a thousand things there as well; what personal care things do I need: emergency alarms, someone to do my laundry, a shower seat, someone to come out with me incase I faint, someone to tidy my room and pick things up. What study things do I need: a electric scooter to get around, someone to carry my books, extensions on my essays, a notetaker. What is the plan if I do faint. And who is going to pay for all this? which means hours on the phone to student finance.
3) and I suppose this is the one I'm struggling with most. Who am I now? I know that RSD is not all there is to me but its all everyone sees, "hows leg?" "what have you done to yourself?" and it does have a huge impact on my life, I've spent the week before last in bed because someone pushed me off a train setting off a pain spiral thats left me unable to do anything more than stare at the ceiling. So how do I accept this as part of me without making it all of me. I mean I'm not public property, you wouldn't go up to a person with acne and say "you have bad acne whats your diet like?" or an overweight person and say a similar thing so why, when I have never met you before in my life do you feel the need to know about why I'm on my crutches!
How do I stop getting so upset when people make well meaning comments, "you're not walking down the aisle like this" (not that I'm getting married any time soon!) becomes if you worked harder/ better you could get rid of this and its not all in my control! oh and my particular favourite "my (insert friend or relation here) had cancer and then they went on holiday and thought positively and now they're better!" yes I know you're trying to help and make me feel better but thats the thing with cancer, its an invader in your body and you can fight it! with RSD its your own body thats decided to not work properly and there is no end point in sight so while there is a role for positive thinking its not a miracle cure by any means!
Also (and this is what really winds me up) I'm not a moron, when you see a youger person in a wheelchair it doesn't mean they're mentally disabled so don't treat them like they are. Moreover, the key word in that sentence was PERSON! that means that just like you I don't like having doors slammed in my face or people leaning over me or talking to whoevers pushing me about me. I'm still a human being and yes my life is different to yours but it doesn't make it LESS.
Don't want to end this post on a massive downer so positive things that have come out of this are:
- my blue badge- very handy when average time spent trying to get a park at hospital equals around 45mins.
- Discovering a love of skirts and dresses- its too painful for me to wear jeans so I'm becoming more creative with my wardrobe!
- toned arms, although my tummy and legs are just wobbling balls of fat and skin because they're not being used my arms (which carry all my bodyweight day in day out) are as toned as anything!