I’m here Jen
Thank you Char, it means a lot when someone at least says “I’m here”, I am so fed up with everyone else saying to me “Get over it”.
If only things were that simeple hey!!!
What sort of things are you fighting to get?
I miss my old buddies too, a lot dont use this new site, i still have 2 buddies though,and i am getting more used to the new setup but its not the same,its too clinical for me.
What are yoy having trouble getting help with ?
I have .done all my fighting to get what I need now, and it has only taken me 2 years!!! My next biggest hurdle (AGAIN) is to complete yet another DLA form and ESA form!!! Do the powers that be think that Jesus is going to walk through my living room, lay on healing hands and say you are cured!!!
I am just not coping with anything any more Char, can’t get the right help or no help at all and I am just not dealing or coping with anything at all.
#Thank you for answering me, I have done all the fighting now, as basically I can no longer be bothered fighting for anything.
As I said in my previous message, my next biggest hurdle is filling out the novels of forms that have to be completed if I want to live!!
I must admit, I hate the new site and as you said it is far too clinical. Wish they had left things the way they were.
My biggest problem is not coping with anything at all.
Shouldnt you have a social worker. At our neuo department we have a resident social worker who can help with situations like yours. Have you asked your ms nurse if you have one, and also ask your gp to refer you for help - no matter where from - social services, social worker etc.
You shouldnt be doing all this on your own and I know exactly how you are feeling, worn out with the lot of it. Disability shouldnt be like this and feeling sh.t isnt nice.
Do you have a DIAL in your phone book, if not google it. We have Welfare Rights here too who help fill in forms, in fact they did my sons for him as hes not good writing and I have problems too.
Ring your gp and state your in a mess and need help filling in all the forms, alert your ms nurse and ask for documentary evidence, also ask them to help you. If you dont ask you wont get, people dont volunteer anymore unless they know you are struggling.
PLEASE DONT GIVE UP HOPE, THERE ARE BENEFITS OUT THERE FOR YOU - one last hurdle. Do let us all know what happens.
ps: ((((((((((((((((((((((((((((hugs))))))))))))))))))))))))) we are all with you
Don’t have a social worker, have an occupational therapist who is as much use as a chocolate teapot!!! MS Nurse has signed me off as there is nothing she can do for me, although she has given me an appointment for Feb 2nd. This is due to the fact, that I asked to join a group of 2/3 people who have been diagnosed as having PPMS and for us to be able to talk about what we are going through and basically a support for people. She said that no I couldn’t join it as I didn’t like being in groups of people, when I said to her groups of people, I meant 20 or 30 people as I am really a very shy person. ~So I am going to go and see her and explain to her in one syllable words what I meant!!! (Although when I worked, I was the most confident person in my work as I knew my job inside out.
I have copies of all the forms that I ahve filled out previously, so there really isn’t a problem with that. It is just the writing that causes me problems as I write for 10 minutes, hands go into spasms then I can’t write for about 2 hours. So these bloody forms take me forever to complete. ~When are these idiots going to get it, there is no cure for MS of any kind!!!
I have the joy of completing yet another DLA form and ESA form again this year, which I must admit I can see far enough.
I have got supporting letters from everyone and their granny. No-one gives you help to fill out forms (as I have already asked) and even if they did they are not prepared to write down what I want them to write!!! #What use is that to anyone?
My problem right now is that I am not coping with anything, I am losing the plot and no-one seems to want to listen. I am sick to death of people telling me to “get over it”!!
I had already written you a long response, don’t know what I did and deleted it.
Just for good measure - I hate this site!!!
#Thanks for answering me Bren, it helps to know that there are other people out there and not just me.
Hi Jen, I’d like to hug you and wish that this b****y MS malarky would just all go away. If wishes came true…if only…it’s just not fair and you should not be having to cope alone like this.
I’m not sure what I can add in terms of advice as it seems to have been been covered by the earlier reponses but I just wanted to let you know I am thinking of you and hoping that things get easier.
And for those people who are saying ‘get over it’ well they need to get a grip on reality because this isn’t something we can get over.
Much love, Mary
I have RRMS and can’t imagine what you must be going through and can’t give any advice on drugs etc as I’m new to all this. But if you need to just chat, moan, shout whatever just pm me. We’re all here for you.
I am sorry to hear you are stuggling Jen; don’t know if I know you but welcome back.