I have recently recieved my RRMS dx and… Well I haven’t stopped crying today. I feel so alone in this as my family live away and my husband is struggling too. I have a little one who isn’t at school but I have even struggled with her today. I have to decide which DMD to discuss with the MS nurse but I just break down when I pick the booklet up! I just can’t find the light at the end of the tunnel!!!
Oh sweetie…I know it’s awful. Just diagnosed myself and don’t think my head has caught up yet. I’m starting CBT tomorrow which my GP thinks will help. Don’t know what else to say…all of the usual…but they’re so true. It really could be worse…my husbands daughter had a double mastectomy a day ago at 33 as a preventative measure…she has inherited her dads mutated cancer gene. She also has to have her ovaries out soon. And last night, he found out that his brother in law of 40 years has prostate cancer. So you see… As I said to my gp when she apologised for not wanting to tell me, on the day I was diagnosed someone, somewhere will have been told they have a day, a week, a month to live. MS is NOT a death sentence, merely a new way of living. Catherine
About 35 years ago I met a woman called Judy Graham; she has MS is the editor of the best MS Magazine ‘New Pathways.’
She said to me the greatest 8 words ever said to me “Don’t worry a cure is around the corner.” Alright it turned out to be Hyde Park Corner but those few words gave me the one thing no doctor; Neurologist or anyone gave; HOPE.
So I say to you with far more knowledge than they had 35 years ago; “Don’t worry a cure is around the corner;” great strides are being made as we speak.
In fact I would say the only real worry you have is the age old one; ‘what colour hat am I going to wear at my girl’s wedding.’
Remember: MS is not a stop sign; its traffic humps.
Not sure if this will help, but crying all day is absolutely FINE right now! No matter how many times we tell you that things will be OK, you still have to try and deal with the fact that your world has just been turned upside down and having a decent sob can be a good way of getting some of the grief out of your system - because that’s what you’re feeling: grief. You have just lost who you thought you were.
Don’t worry about DMDs right now; there’s no rush. Deal with it when you’re feeling more up to it.
For now, just take it one day at a time. Gradually you’ll come to realise that life goes on as before, just now with a label / an explanation for your symptoms and better support for them.
As George has already said, you really will get to decide on the colour of your mother-of-the-bride outfit. You can still have more children if you want them too. And you can still travel and go to parties and the theatre and the cinema and for day trips to wherever… Life might be different, but it really can still be good.
Take your time. Talk to your husband. Let him talk to you. Together, you will get through this.
I was officially diagnosed last week, but have suspected i might have it for over a year, but then i got better and so thought i might have been wrong… Until i had my mri scan a couple of months back and there were several lesions. I still had to have a lumbar puncture to get a full picture and i guess i was kind of living in a dream world that it would come back fine and theyd got my mri mixed up with someone elses…! Fat chance! Anyhow, i finally have a diagnosis, which is kind of a relief but my emotions have been up and down since my mri results came back last month. One minute im living in the hear and now and realise im very well right now and i should be grateful because it could be a whole lot worse, and i feel guilty for getting upset when people have so much worse, but then next minute i feel frightened for what the future will hold, that things might suddenly just go downhill, because they can anytime. As crazy as it sounds it feels reassuring to read other people stories and know that im not the only one feeling this way. Ill be starting meds in a few weeks which will be a challenge in itself, im pettrified of self-injecting!!! Ahhhh.
Hi Bankie, I know how you are feeling, I dont have MS, but I do have sypmtoms that mimic MS…The feelings you are going through are normal, your life has changed over night and its awful.Yes we do have days were we think " great I am feeling fab today", then bang your back on your knees.
I find some days are good I can get about, then I have days were I do not have the energy to walk upstairs…I miss my busy like I had 12mths ago, dont do much and that has made a massive difference in my family life., I try and keep positive by writing a diary and put my thoughts on paper.
Have a go, it may help you.