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where has my fight gone????

hi all,

i went with my family on a day out and i really struggled. i had to stay on my feet alot and i spoilt the day for everyone.

lately i am having trouble with pain and the strenght in my legs and did not realise that i would struggle so much. so when i got home it hit me hard all the things i no longer will be able to do. in the past two years i have been determined that my symptoms would not get to me and i would fight and fight and carry on as best i can.

i have no dx but in the last two years i have gone from working full time to dla and my hubby taking early retirement to be my carer. now i just cant find the energy to fight any more. i feel a total burden and i can see this wheelchair looming. where has my independence gone? i cant go out without crutches and a “minder”. everything i wont to do is relient on somebody helping me.

sorry for feeling sorry about myself when i know others are a lot worse of than me.

lorraine x x

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 w word.

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 w thing!

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 its 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?

much love

Pollyxxxx

Exercise, diet & meds help to stave off symptoms and keep what we have for longer, but the fight against symptoms isn’t really physical, it’s mental. It’s not about keeping doing what we used to, although there are often ways, it’s about adapting to change and using whatever tools are available to still live a good life. Every loss hurts like hell and of course we mourn them, but then we have to move on, find new things to do and new ways to do them, keep as strong as we can physically and stronger mentally - so we don’t let it beat us. I walk really well, but can’t do it for very long so I have a wheelchair. When I see people struggling with sticks or crutches, I want to scream at them, “Get a chair!” They see failure. I see freedom. It’s just a mobility aid after all; and a damn good one! Karen x

How you feeling today Lorriane?.

luv Pollx

hi poll and karen,

thanks for replying and you have both given me a bit of a lift. i understand now that i am grieving for the abilities i have lost and am despertatly trying to replace and strengthen abiliteis i have.

as for the “w” i think i have got to try and come to terms with the fact i might need one sooner rather than later. i have got in touch with my local ms branch and someone is comming to talk to me next week, she knows i have no dx and talking to her on the phone for just 5 minuits has given me a bit more hope.

lorraine x x x

Hi Lorraine,

I have no dx yet either. Got one cervical lesion and clear LP. I have had to adapt too. I have swapped golf for yoga and met a lot of new friends. I have gone from running daily with the dog, to walking and now I cycle with her as walking with spasticity is difficult. I suppose the next stage will be a power buggy but I try not to think of this. It is difficult when there is no dx as treatment options can give lots of hope and the feeling that you are doing something to fight the beast. I often feel it would be easier to fight a beast if you knew exactly waht it is!

Take Care

Moyna x

hi ,

i am begining to pick myself up again, but it seems every week a little bit of my abilities dissapear.

as you say moyna knowing what we were fighting would be half the battle cause hitting my head on a brick wall hurts!!!

lorraine x