Sarah I have a 10 yearold at home who is a wonderfull child but I fear I have started to make her and my six yearold nephew into my carers.Contact Banardos as they strive to give children days out and many other things like confidence and come to terms with a parents illness.
I dont think we will ever get used to it,we know it is coming just when is a waiting game.So make the most of your good days,enjoy your children and your husband.Even if you are so tiered after a trip out it is well worth it for everyone to enjoy themselves and of course yourself.I no longer plan a day out as I do not know how I will feel each waking morning,I am now a get up and go person.I had my wheelchair donated to me on Tuesday and it has given me part of my life back.
I get full body stiffness during the night and have to be carefull as one time I was faced down in the pillow being smothered unable to breath.Yes it is scairy and yes we get up in pain and stiff,but again ask your GP what can be done to help you.This then makes the fatigue worse.
You need time to come to terms with this.You will have your highs and lows and family and friends can help you.Explain to your boys the basics but choose your words carefully they do not want to be worried all the time.Ask for help when you need it.
I am glad you have joined the site,read some of the threads posted here and it has lots of information,another site I use is the MS Trust site,they again have lots of information and sugestions on how to beat this horrid illnes..
Yes maybe your thinking at the moment when will I feel normal,my life feels rubbish,but I am sure in time and the right medication you will start to feel you again.Maybe get a councilor who you can chat with untill you feel a little more ready to fight back at MS.Get Social Services adult section to advise you.I got myself a Support Worker from Gwalia Support and care in the community and she is worth her weight in gold.
OT and physio can get you FREE aides to help you around the home and even outside,the MS Society can also help you with things you may need.Bath lift,bed risers,adjustable stools and so on.A district nurse can help also and if you need fenamin items they can supply them free.
You need now to get all those free support of diffrent kinds now this will ease things for you and your family.Do not just sit and think nothing can be done,I am struggling time to start asking for the help you need and set up a good support basics.
My heat and cold preception is terrinlbe I cannot tell hot from cold so I will be buying thermometers for the bath and kitchen sink,small things like these can make a great diffrence.Its just finding out what you will need and getting it.
If your grip is weak then thick elastic bands work wonders on door handles and say knives for better grip.
You can lead a more normal life and yes you will get those bad days and nights,your tired and feel weak and in pain of course you will cry and get angry but time will help you with support from others.
Maybe you dont feel you need aides around the home but MS messes with us so they will be there when we need them so we do not struggle.
Your not alone you now have a new bigger family to help you along.