Visitors staying - why am I worried?
So in 4 weeks time we have wonderful friends arriving from overseas and they are literally traveling to the other side of the world to visit us. We've known them for over 30 years they are our best friends and they've been twice before and each time we have THE BEST time ever. So why am I worried?
The previous two times they visited I was working, I had an identity, I had money to do things, I was able to walk and I was able to operate at full speed all day, every day. Today I feel I have none of these things.
I was made redundant two years ago and decided for the first time to take the opportunity to sort out my health. What I thought was a simple issue of a bunion stopping me from walking turned out to be more than that. I guess for someone who was supposed to be smart I was not that smart after all. It wasn't a bunion stopping me from walking and after nearly two years of various tests it was deemed a neurological issue. Looking back I wonder if deep down I wanted it to be something fixable and didn't want to admit the inevitable?
During two years of various tests and prodding and poking I have not been able to claim a penny for being out of work. I remember thinking this could take years to sort out. So we moved to a smaller house as my husband is not on a good salary - he works for a non profit organisation. Benefits in Australia aren't paid until fully diagnosed - which as we know with MS can take years so with no benefits and a low one income salary, money is always tight. We're constantly robbing Peter to pay Paul and we definitely don't have money to do day trips with our friends.
Unlike yesteryears I am no longer able to walk far however I still refuse to use a walking stick and apart from a bi-weekly shopping trip I am basically housebound. I get easily out of breath which means I get over heated which then results in overwhelming fatigue. Everything I do has to be meticulously planned and I have an inbuilt ability to recognize how much I am able to do in any one day often pacing myself well in advance. This means visiting places with visitors will be a chore and impossible for me to enjoy without getting over heated and this will slow our friends down and I know I'm not much fun when I'm exhausted and hot and sweaty from trying to walk.
It may sound from the above that I am down about my condition but to be honest in my day to day life I have learned to understand my limitations and live within them and within our means. We no longer have days out, holidays or go out with friends as we don't have spare money to do this and fortunately we have a simple life. Instead of expensive meals out we invite friends over for dinner or we go to theirs which is much more manageable. So our lives are pretty ordinary and to some this may seem boring but to us it's our new life and we make the best of it. All this will be challenged when our friends arrive as they will want to see us and involve us in their holiday atmosphere.
So why am I worried? I'm worried as I know our friends will want us to go with them when they go out and although I know they will offer to pay I know we are too proud to accept. I also know I can't walk far and won't be able to join them without slowing them down. I also know I will get all hot and bothered and out of breath and then feel totally fatigued and need to sleep, this is not conducive to a happy day out!
What to do? I would prefer to let them go out and enjoy their holiday visiting places of interest and having great days out unstopped by someone puffing, panting and wanting to sleep or rest. This means I can rest up and in-between sit down and prepare a lovely dinner for when they return and at least this will make me feel I'm contributing to their stay and we can have a few drinks and laughs at the end of their day.
So why am I worried? I guess I'm worried as I've changed from the person they've known for 30 years. My new normal is not normal. I'm no longer the person I was and no longer capable of doing *normal* things and although this doesn't affect my everyday, it does affect me in unusual circumstances like this. Our friends are wonderful, caring, kind people and I know they will understand if I tell them, I guess I'm worried as this is actually another step in the direction of me admitting I am no longer who I want to be, or who I keep kidding myself I am. It's another example that no matter how hard I try and no matter how hard I fight against it, I am again having to admit this has changed my life. I am worried I am no loner me. And I am worried that it will spoil their holiday or that it will put a damper on everything and I will no longer seem the fun loving person I once was.
So why am I worried? I'm worried that our friends will not enjoy themselves for worrying about me. I know they will want to involve us in their holiday, they are kind and compassionate and I know they will offer to pay for us to join them and I am worried by declining this may upset them or by accepting means I will exhaust myself trying to keep up.
So in summary whilst we are REALLY excited about seeing our dear friends, I am worried about the effect this silly illness has on me and my life. This is what some people don't realize is the effects it has on something so simple like having visitors come to stay. Added to this I don't want it to affect me or my life or those around me. But it does. And as I am still coming to terms with it, even sometimes ignoring it in any way I can, it still smacks me in the face to stop me denying it.
Is this normal? Has anyone else felt like this or is it just me and what would you advise in this situation? Thanks in advance for any advice or sharing of your thoughts and views on this matter.
Does listening to music help lower the severity of your stress or MS symptoms?