Hey im 27 have 2 lil boys aged 6 and 7 (my heros) iv had a disease called cidp for about 2years now and my consultant just wrote me a letter saying i also have ms… But when my hubby called his secretary she said the consultant had diagnosed me with ms in sept… So anyway still trying to face the facts but deep down im struggling alot, my boys help me soo much il never be able to repay them. I just really wanted to know is it normal for me to feel s*** and low, the only person who i could rely on was my mum who passed away in sept and now i feel like im all alone. This is the first place iv written on, iv had to support from anyone and im sure there will be support for me out there, only thing is my consultant told me it is a very rare disease (ms and cidp) Hope to hear from someone xxx
Hello Kerun
Welcome to the boards. Sorry to read about your diagnosis of ms on top of the cidp ( chronic inflammatory demyelinating polyneuropathy) . Such really bad news for you…life can be so unfair.
Yes its normal to feel so low and not surprising considering your conditions.
My mum died in November so know how your feeling…what about your husband Kerun? is he supportive?
You need to make contact with the ms nurse and ask for some support, soon as possible.
You will find plenty of great people on here who will be happy to offer support.
Take care for now xxx
hello kerun
as well as contacting your ms nurse, consider going to an ms therapy centre.
all ages, all stages of ms, lots of chat, coffee and cake.
therapies available at a subsidised cost.
your boys will keep you going, bless 'em.
take care hun
if i’ve been clumsy in my wording, sorry but i’m sozzled!
carole x
Life’s a bit unfair. Take your time to get your head round your diagnosis,especially when you are grieving for your mum. This forum is excellent for asking questions, getting some emotional support and feeling like you are not alone. I don’t think this is something you can deal with on your own, be brave and ask for help both emotionally and physically. You will discover some great depths to yourself and witness some huge changes for the good in your relationships with those around you. Ms nurse is excellent, GP and close friends. You are definitely not alone. If having a bad day I can chat with others on here and everyone knows exactly what we are dealing with. Best advice I can give you is to be honest with those round you, people can’t help if they don’t know how you are feeling. This is a huge thing to get your head round. I was dx over a year ago and still find it hard to accept. Learn as much as u can bout ms. Learn your triggers that make you feel worse, avoid stress if possible. One person said to me “I have ms, ms doesn’t have me” You will become strong, few wobbles on the way, but focus on the positives in your life. Xxx Here if you need , anytime… Hugs Suzi
Hi kerun,its no surprise you are feeling so low,you are grieving for your mum,and you are having to cope with an ms diagnosis as well,
theres no rushing the grieving process,it will take quite some time,when i was diagnosed with MS i went through all sorts of emotions, denial,anger,sorrow you name it i went through it,like a lot of us with MS do,try and accept that you will feel low for a time, be kind to yourself too, and your little boys will help you such a lot,my daughter was born the year after my ms was diagnosed,and she helped me stay strong (shes 21 this year,with a baby of her own)
you will have good days,and you will have bad days too,make the most of your good days,and rest and treat yourself on the bad days,coming on here should help too,if only to offload.
J x
Hi Kerun
There is some fantastic advice on this board and I also offer my support. Talking helps and I am sure the boys will keep you on top of things because it is what you have to focus on at the moment.
It is ok to grieve for your mum and her loss and for yourself but after each step in this process allow yourself to give it a fullstop and take the next step.
I would like to recommend you have a chat to a professional Councellor. Ask your GP to arrange this for you. Your MS Nurse can help with Rehab/Outreach Team.
I wish you and your family a healthy and happy new year.
Cheers
Moira
The advice so far is great as usual. Can’t really add to it but just wanted to say hello and welcome and please remember to be kind to yourself. You’ve found a fab place to get support. Hope 2014 is a more positive year for you. Take care. Ann xx
[quote=“Blossom”]
Hello Kerun
Welcome to the boards. Sorry to read about your diagnosis of ms on top of the cidp ( chronic inflammatory demyelinating polyneuropathy) . Such really bad news for you…life can be so unfair.
Yes its normal to feel so low and not surprising considering your conditions.
My mum died in November so know how your feeling…what about your husband Kerun? is he supportive?
You need to make contact with the ms nurse and ask for some support, soon as possible.
You will find plenty of great people on here who will be happy to offer support.
Take care for now xxx
[/quote] Thankyou for writing to me, my hubby helps alot but at times i feel so bad dragging him down with me, my consultant told me about a ms nurse and that she should be in touch after the new year xxxx
Just want to thank everyone who wrote to me, i really thought nobody would. Feeling abit better today. Thanks once again xxxxxx
Hello Kerun
I’m glad your husband is so supportive. Try not to feel bad, I’m sure he doesn’t feel dragged down…he must love and care about you. My husband helps me a lot and I don’t feel guilty…I’ve spent years supporting him…its time I got something back Lol
You say the neurologists told you, the ms nurse would contact you in the new year Kerun, which is great. If I was you though, I would give them a ring yourself…sometimes things get forgotten at busy times.
Take care