Hang in there, Heather.
Linda & I are at different stages to you. I remember when I first became disabled with my "mystery illness". After 24 years I STILL do not have a firm diagnosis! I've had a few things "diagnosed" which now have been tossed out.
When I first became affected by this, I was working full-time in a difficult job. There were always people waiting to pounce on the slightest sign of weakness and to take advantage of it. So like a bird in the wild, I did my best to hide any problem. People would ask how I was and I would answer, "fine." Then I had to approach the boss and ask for time off - he was angry with me because when I said I was fine, he believed me. He wanted honesty. But nobody at work could handle illness and disability - I was surrounded by health professionals who as a group, avoid illness except when they have no choice.
So people asked me how I was (as part of the daily greetings - they don't REALLY want to know!) so I kept my answer honest but limited - three word limit. "Not bad," or "hanging in there," or "I'm here." And as I was afraid of, I got hostility. And ridicule.
I didn't want to use any walking aids, but I was hanging on to the railings when I walked. Or brushing my hand against the wall so I could manage my poor balance. Finally when my knees began to buckle after a few steps, I had to begin using a walking stick. At another time I had to have my arm in a sling - everyone assumed it was for a sprain. But it was for both arms, and for nerve pain and weakness. Using the arm aggravated the pain.
When you fear the reactions of people around you, you naturally take steps to hide your illness or disguise any disability factor. What I had to finally accept - using the aid made it easier for my gait to look more normal. Now when I walk with (mostly only one) crutch (like Dr Kerry Weaver from ER) people soon forget I'm using a stick. Again I keep my answers brief. Just today I was walking with difficult child 3 in the local park and met a woman (new neighbour) playing with some kids. She said to me on seeing the stick, "What have you done to yourself?" and part of me inside still feels, "here we go again."
I answered her with, "I haven't done anything recently, this is long-standing. It's a bit like MS, no big deal."
I've had my time in wheelchairs, I've been using these sticks for over 20 years. I've had nasty comments, I've had scepticism, I've had some very unpleasant stuff in the workplace including being the butt of some very mean jokes. I've lost friends. But using aids or not using them - it would have made no difference. Because I was unsteady on my legs, it was obvious when I walked. It was LESS obvious when I used help.
I've found a lot of good things too. I did leave my job - I didn't want to. I was very depressed as a result and really tried to stay in the workforce. But I realise now, my availability has been a Godsend for the family. It has also given me an entirely new life direction, a much more fulfilling one. I've gone in a different direction, gained some new skills, honed some old forgotten interests and skills and risen to the top there as well.
I've made new friends (including people here). I wish some of them had known me when I was well - they would understand me even better. But they do accept me as I am and know that I understand, so they talk to me when they are afraid or in pain. I've discovered depths to myself I never knew I had, hidden strengths which have come in very useful.
Heather, I won't tell you to make the best of it - that would be cruel. I hated it when people said that to me. Or they said, "Pull yourself together!" Also not fair - how can you?
All I can say to you - it does get better. You won't feel this bad for much longer. There isn't just existence after this, there is life. And if you ever get better - even more, you will value everything in your world around you so much more deeply than you already do.
I'm still disabled. I would love to be well but I don't expect it to happen. I still haven't got a proper diagnosis. Frankly, I've got to the stage where I no longer care about a label but I remember caring very deeply because I believed that with the label would come the chance of recovery. I was in anguish with each new symptom, wanting to scream at doctors, "Wake up! LOOK! THINK! Use that brain you are alleged to have, put it to use and HEAL me!"
I'm still disabled but I now have a very full and happy life. I'm productive. I have accomplished good things. I have people coming to me asking me for help - publishing, writing, teaching, friendship - I have found ways to do these things, getting around what used to seem to be insurmountable obstacles.
I am not telling you this to say, "See what I can do! You have no right to feel this bad!" because you DO have a right. I am trying to show you - you will find that you can do a lot more than you now realise, but you have a little way to go yet before you can discover this for yourself. Don't rush yourself. Don't feel guilty. And don't compare. You have your body to deal with. I have no way of knowing how I would cope, if we swapped placed. I might flounder, wonder where you find the strength. We just don't know.
All we can do, is make the best of what we have got. But before you can do this you have to KNOW what you still have got.
Use what you need to. Hang in there. Be miserable when you need to, without feeling guilty. You need to go through this, to get to the better place on the other side, a place where the quad stick can be a useful tool to help you accomplish the things you never knew you could do.
Heather, consider yourself hugged from across the Pacific. And that's got to be a very big hug!
Marg
