As most of you will know I dont have a concrete DX. My main issue is right leg spasticity and my walking has been deteriorating since 2010. Thankfully probably slower than would be expected for PPMS.
Without a DX I seem to get no sympathy from my family (I think the whole issue is pushed under the carpet). For example hubby keeps inviting his extended family over for dinner. My kids expect far too much and they are all over 16. My 20 year daughter groans when I ask her to carry the basket of washing down the stairs with “Why cant you do it”. They all complain bitterly if I ask them to take the bins out etc. I reckon that all this is my fault as when able I have done far too much for them and they refuse to admit that Mom is not quite supper Mom se was. Hubby feels hard done by too as after running around after my lazy kids all day I am too knackered to have fun under the sheets!
He is away with youngest son at the moment doing lots of U18 golf competitions. (watch out next Rory Mcllroy). Anyway my 20 year old daughter came home at 4am with a crowd. Then at 6am I was woken up by one of her mates comimg in to my room in his underpants, opening my wardrobe door looking for a toilet.
On another point is social services. I have a 21 year son with Downs Syndrome and autism and is totally incontinent and I only get 2 hours help a week with him at home. Although he is out at day care from 9 until 3. Now I know a lady near me has RRMS and a child with Downs. She gets help every day and frequent weekend respite. Her child is quite able and can toilet himself. She told me that once see got the MS dx the help came flooding in. Now i shouldnt say this but her MS must be mild as she runs most nights and plays tennis at the local club 2/3 times per week.
The thing is being in limbo gets you no help at all. Also I can look after my son but on top of being cook, cleaner taxi driver etc etc for everyone else it is just too much. If social services give help they put someone in to bath feed my son etc but I would prefer to do that myself and use them to iron or mop floor instead.
I really have had a rant.- sorry
PS I go for my baclofen trial on 11th August - fingers crossed