I just sit and read this thread in amazement. Heather, you're spoken your truth beautifully and everyone is the richer for it! Thank you so much. This is truly an "Important" thread like a few of the others we keep bumped up. I am so touched and there is nothing I could possibly add.
Quix
Oh honey...you don't have a thing to apologize for. I was not upset at all. Trust me on this one. I wrote what I did, to help those people who do not understand; what it's like to have "Invisible MS."
I totally understand how bad you have it, just trying to make it through the day, Samantha. God love you for determination and strength. I happen to think you are remarkable.
No one hopes more than I do, that you will soon fit "in some box," no matter what the diagnosis, so you can start to get the help you need.
God love all of you...this forum is for discussion and learning, that's exactly what we are doing. I learn more from all of you, everyday. You are a true blessing...all of you.
Heather
I hope that I did not sound glib about a DX of CFS - I did not mean to sound that way. It is a massive thing to happen to you and will change your life enormously. I should know; I've had it.
I had one thing on my side; my age. I was only 19 when symptoms first presented and 20 at DX. Whatever happened to get me well enough to leave my parents house again after 6 months of chronic illness and heartache I will never know. At this point I am wondering if it was even CFS at all, but maybe I'll never know. I apparently don't have it now - according to my CFS Doc - so I just have to wonder exactly how related this current illness is to that one.
For those of you who have CFS I give you my full sympathy and support. I do have some info on it and will post it up soon - I'm working a full day of classes tomorrow at school and had a meeting til 7pm tonight so am beyond the point at which I could do it now. Hoping for tomorrow night or Thursday, my day off.
Mel
I am truely sorry for my comments and i would never want to upset you are make you feel bad im just frustrated that i cant get help for the things i need im trapped in my house as i cant walk far i use a cane i use a wheelchair but because i dont fit into any bodys boxes at the moment i cant get help!!
The friend who has MS jogs three miles a day she goes to collage she has three boys she is out everynight running football club with them she goes out most weekends to late and has not had a relapse in five years!! which is great and we laugh together how she is so fit and i am not and that she has a badge and i dont but she also agrees untill i fit in a box i wont get help its how it seems to work over here and im sure all those years of fighting to know what is wrong with you you will realise that.
I know what it is like to have a illness that does not show on the outside one day ill be ok enough to pick the kids up another day i can barly get out of bed and people dont understand this they look at you and you look fine but inside your not.
Lots of love sam x
Thank you for your kind words.
May I say something about the "handicapped placard," as we call them in the United States? I also do not use a wheelchair...I do not use a cane to walk, I do not "look" like I have anything wrong with me....you see...I have "Invisible MS." And "I" have a handicapped placard. You may ask why. Why Heather if you do not use a wheelchair, if you walked unaided without a cane?
You see, I may have "Invisible MS," but I park in a handicapped area. Why? Because, with my course of MS, I can walk briskly INTO the store...I am full of energy and ready to do my shopping, but you see...several minutes into my shopping experience, my legs begin to feel like they are in quick sand. My legs become heavier with each step that I take. Suddenly I am tired. I just want to go home. I am only half way through my shopping list...I have yet to get the bread, the milk, the washing powder...and I say, "How will I ever make it?" I muster all the strength I can, to finish my shopping. People besides myself, are counting on me to bring home something for supper or that milk....something they need so they can have their favorite bowl of cereal in the morning. I struggle through. I complete my list. Then I stand in line for what seems like an hour, waiting to be checked out by the cashier. I grow more tired by the minute.
I start out of the store. I smile when I see that my car is only a few feet away. Thank God, I don't have much further to walk. Thank God for that handicapped placard.
That's why "I" am so grateful for that special....'handicapped placard.' Something no would else would even know that I needed, when they saw me ENTER the store....
This is my story, but could be, the story of so many with MS. Our disabilitiy is not always there, for everyone to see.
Hugs, Heather
zilla
a dx of CFS or M.E as we call it in the uk is not to be taken lighly and if you visit the forum for it on here curls has some fantastic research about it and has been a great support to me as i have always kept my option open specially since the MRI came back clear and was reluctant to have the other tests iv just had but they have to rule all other things out, im learning towards fibro and really want to get to see a rheumy but my doc is sure its something neuro based and is learning towards MS but fibro is in a away and CFS linkned to the CNS and causes neuro issues some people are bed ridden with it, infact my friend who has MS had it tens years apart from two attacks is so healthy more then me i can barly walk without a stick and have to go in a wheelchair if i go on long trips and this girl jogs most days yet has a disabled badge, MS,FM,CFS are not a death sentance but they are cruel illnesses for some its a awfull painfull, back breaking illness for others it seems to touch lighly in all of the named conditions.
If i was working still, going out, being the leader still in sunday school at church i would not mind what this was if i was not in constant pain, if i did not let people down all the time because of being ill i would not care, but i grieve for my losted life im honest, i want my old life back, but thats my will not gods.
If i knew what i was fighting i would reasearch it, do the best i could to make things more comfortable for myself which i am trying to do anyway but i could face it front on and that would help so much, i could scream with the frustration of this all, oh how quickly your lifes turns around. ill look at that site.
Heather
wonderfull posting, and you have been through so much what a wonderfull strong person you are, you knew all along what you had and noone believed you not even docotors, how awfull, im glad you have some peace now and some treatment and im glad that consultant is paying for his mistakes i pray no-one else gets caught up with him, im sorry for the losted years of frustration and pain.
take care samantha x