Hi Lorriane, yes love, I get completely what you are saying.
i have been and still find myself in that dreadful, dark place occassionally now. When my bladder, bowels and fatigue are too much, I have a day in bed.
Your story is much the same as mine and no doubt, countless others here.
there is absolutely nothing to feel ashamed of or a burden on others. those we now rely so heavily on do not see us that way.
What I want to try to reassure of is about the
I needed a wheelie part-time within a year of leaving work, at the age of 47, as i was in a terrible state. I am 60 now.
I went through umpteen tests, with them all coming back normal.
I was led to believe i had PPMS, then given a 95% diagnosis of it. 7 years later that was overturned for a different condition.a genetic one, with a 50% chance of my children developing it. My world fell apart. i apologised to my children…they said i was punishing myself for nothing…no-one could have seen it coming, before i had my family.
Now, back to the
My wheelie is my legs, my best friend, my ability to get up from bed, and out into the world. And you know what? Millions of others will tell you the same.
Life on wheels may not be what we ever dreamed of, but it isnt the end of the world.
Using a wheelie, will give you back your enjoyment of life. To join in things with friends and family. Of course it is best to plan outings to make sure where you want to go is accessible.
Shops and other places are rigged up for us wheelies. If they`re not, we boycott them and can spend our money elsewhere with no trouble.
So hun, has any of what i`ve said helped.
Being in limbo is horrible and no-one knows what it
s like unless theyve been there.
My hubby also took early retirement to look after me.
2 years ago I got Direct payments. i have 3 other carers and it takes the pressure off him.
would it help you too, do you think?
if i can help further, please just ask, yeh?