BAD NEWS - GOOD NEWS - BAD NEWS AGAIN!

Well aint that always the way of it!



Bad news - Your legs aren't really going to get better the MS is all down hill from here on in. It is no longer Relapse/Remitting it is now Secondary Progressive you will need to keep the wheelchair but you should get more help now your not being a 'malingerer'



Me - Yay! like I haven't been trying to tell you all that from last October!

Won't hold my breath for that help though! The last five years has taught me it isn't coming!

My council, who we rent our house from doesn't believe in help because things will always get worse! So the disabled access toilet and washing facillities I was supposed to get five years ago are still not here, they just fobbed us off year in year out saying that they were looking for a house that WE KNEW didn't even exist. If we knew it how can they say that they didn't know it? Not saying that having a showeroom or a more accessable loo would have made our lives perfect for those years but it would have made everyone in this house's life a damn site easier! No they just kept hoping to hang on long enough till my then 13 and 14 year old daughters would be old enough to force out of school and chuck out at 16. Girls didn't want to leave school or home but at 19 and 17 that is exactly what they have had to do. They hung on as long as they could but in the end they just had to go! The oldest does what she terms 'sofa surfing' as she maintains that since she lost the job she got after leaving school at 17 she can't afford a house and they did offer her one when she was still at school but she is at college now hoping to continue that and point blank refuses to claim benefits.

The 17 year old is a mum herself now but right through her pregnancy she stayed on at school and went back after the birth, as MS got worse here though she really couldn't stay on though and had to leave in November. She was hoping to go to college and get her highers this year so she could pursue a Degree in History which she one day hoped to teach! She can't do that now she has a third floor flat and a daughter to keep. The third one she was offered (two while at school) We still feed both of them, one has no money and the other hasn't yet got a cooker!

As I said it has been a sort of 'suffer now until you are suffering a whole lot more!' kind of policy and they are in no hurry to change that.

Months on from getting the wheelchair, I still can't leave the house. I have even been told that I am Wheelchair bound by someone who could change that!
Now if he had said housebound I could have let him off because technically as they wont give me the ramps I need to get out of the house I am housebound!

But wheelchair bound?
No one ties me to the thing! Perhaps I am missing out on some kinky wheelchair frolics or something! (should really look into that!)

It is like being called an MS sufferer. No one gets to decide if I am suffering, except me! There have been and still are times that I have been but not as much as my poor family have and still do thanks to Falkirk Council!

I might be 'disabled' but I don't think I think of disability the same as everyone else seems to because simply I do not think I am Disabled. Un-enabled maybe but not disabled!

I am in a wheelchair, I sleep on a very uncomfortable sofa and I have just about crippled my poor hubby having the 4 baths he has lifted me in and out of since last December!
The most disabling thing for me in that time though has been the 6 weeks I had to do without my computer thanks to viruses!

I was sure I had good news somewhere, haven't won the lottery, council seem determined to end a very strong and loving marriage, by killing my husband! Not enough that he has had to give up a working life of almost 34 years and the two jobs he had from injury and ill health caused by his caring. Having to help me do things I could do quite easily by myself. They want make him Scotlands first MS 'SUFFERER' that doesn't even have the disease!
Seems everyone else in Europe has a right to a family life and privacy except for us!

Oh I know what our good news was! We have got our Autistic 5 year old into a great school and the respite care we asked for last May might actually happen in July/August. The potential carers seem lovely and very experienced.
Anyone who knows anyone with an ASD child will know that routine is really an essential, A Paeditrician confirmed on the 21st that the breaking of his routines that have been caused by not being cared for at night by his night time carer (which is me!) and the stress in this house is having a detrimental effect on his Disability. He and his brother are lucky though they can now get legal help now as they are most definitely being Discriminated against by Association!

whew five weeks of writing but this blog is done, wouldn't say dusted yet but its definitely done!

Cath x