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My Mam was diagonsed on Wednesday

This is ConfusedGeordie’s post which I have taken the liberty of posting here so that some can reply and help him “My Mam was diagonsed on Wednesday” by ConfusedGeordie » Sat Sep 03, 2011 8:01 pm Hi everyone… My Mam was diagnosed with MS on Wednesday, she has known since June this year but had it confirmed this week - I just don’t know how to feel, she sat me and my brother down and told us together, where he was quiet as usual - I was crying and very angry, I asked a few questions then left the house in a really bad rage and screeched off in the car. I cried and cried and got angry at the world, I guess I’m feeling a little better after coming back home and talking to her about it however my mind is everywhere, being busy at work helps me but every time it creeps into my mind waves of pain and emotion and anger wash over me, I am 23 and still live at home with my brother and my Dad. I’m just raw please help - Is there anyone else out there I can talk too…

Yes, there are those who have been diagnosed and living with ms for years and lots of newly diagnosed, plus carers, friends and partners who share the experience and therefore can help. Im a sufferer of 10 years and still functioning relatively fine. When one reads all the symptoms remember not all come at once, some never come and some msers suffer from one system malfunction more than others etc. No one mser is the same. Some experience pain, some never do. Some have walking difficulties, some dont. Same with the eyes and all other bodily aspects. We only see the worst in any diagnosis not the fact ms is a chronic disease therefore functioning is impeded and for some disability is only very slight some 40+ years or so into diagnosis. Your mother has to get used to being mum but now accompanied with ms. She will feel fear, depression, anxiety and all the things you are feeling right now. You obviously care very much and are as frightened only now it is your mother who needs comfort, to know you are strong there for her, even though your worried it is she who needs to know youll understand how she might change from day to day, yet seem ok. There is a lot to take in however I would read as much as is possible, explain to your brother, share with your father, then talk to mother about how she would like extra support and ask if she will let you know when she needs a hug. If you are a close family then Im sure you can each get on with your lives, caring in the best way you know so your mother can get to grips with ms each of you learning in the process how best to live with this disease. Sorry it had to touch your life however nobodys life is ever straight forward. MS is liveable, can be accommodated and life is what you make it, but it sure helps if family are there for the extra support, love & hugs when needed. TAke care, bren x

Hi - yes Bren has given you a good reply and I agree with her that the MS Diagnosis doesn’t necessarily have to be all doom and gloom, Some people keep quite well for a long time with mild to no disabilities.Keep positive. R

hi

i would love to meet your mum.

my sons were aged 19 and 20 when i was diagnosed.

i know that they love me and would help if they could but the cruel truth is that nobody can help us fight this monster.

i have changed so much.

i have started to put my own wants as high on the list as theirs.

for instance i have been to festival number 6 at portmeirion for the second time.

i have gone alone both times.

the fact that i am able to do this builds my self esteem.

your mum needs time to get used to the diagnosis.

then she can make a plan of action, a kind of bucket list.

it would be good if she knew that its ok for a mum to be selfish sometimes.

so what you and your brother need to do is to remember that you love your mum and she loves you.

but also remember that she is a person in her own right and may well have neglected that side of her life.

so if you can convince her that its ok for her to plan things for her pleasure. that will be a big step.

my own mum struggled with being a mum of grown up daughters. she was fabulous with us as children but its a whole other ball game when your babies become adults. so its not just mums who have ms who need to take time to steer their lives in the way they want. i’m so glad that my mum built a whole new life with my dad after we left home.

i think a good starting point would be to plan a treat with her. maybe a spa weekend.

then maybe holidays.

take it at her pace

good luck, you sound like a lovely daughter

carole x

Hey!

Pigpen and Bren have said some brilliant things there!

My advice is not to look on the unregulated sites on the internet as they can only confuse and worry you.

this site has lots of really useful hints and tips and advice. Also you can call them to speak to someone about the diagnosis. They are helpful and listen. my daughter phoned them when I was first diagnosed as she was also angry and scared.

MS is a frightening diagnosis, the meds are confusing, the symptoms are so varied but overall there is so much support for you, here especially

Asher xxxxx

Hi, sorry but only just seen your post.

The best thing you can do for your dear mum is to use all that negative energy in doing as much as you can to help.

eg

helping with housework, laundry, shopping.

She may insist on doing it herself. She may not ask or tell you what would help her.

Use your initiative and quietly watch how she is. Dont smother her, just be as good a child you sound, bless you.

luv Pollx