Asking for help and unfairness of carer's benefit and how to help me
Still very yellow but getting used to it - the trouble is deciding whether I want to try camoflauge by wearing yellow or be obstinately awkward and wearing something bright and clashy like purple!!! I'd ummed and aahed about 8 weeks ago whether to buy the yellow or turquiose shoes and skirt. Think I made the wrong decision colourwise but wore my yellow shoes out of defiance yesterday!!!
Went out shopping with mum for a couple of hours yesterday. Sheer heaven!! Driving my mobility scooter around an looking at things. Am so weak that even steering was hard work but it didn't hurt my chest so that's good especially as have reduced morphine to 30mg bd now for 48 hours and didn't need oromorph yesterday - did need some diazepam to relax my tummy and shoulder. Realised as I went to bed that had 0.5mg of clonazepam and the label said to take 2 at night!!! no wonder some of my nerve pain had come back.
This weakness thing is quite scary - if I looked at things to buy mum had to hold onto them for me or they got 2 heavy!!! Even a single duvet cover was too much too hold. You can see my arm muscles and leg muscles are disappearing. They've not been that skinny ever.
Good points - nobody stared at my freaky yellowness and infact were kinder than usual and didn't get that look of 'why is that young woman in a scooter when her elderly mum is walking and carrying everything?'!!!
The shop assistants were more helpful as well. M and S are gast becoming on my hit list for porr disabilty access. The new customer services area has shrunk so it is impossble to turn the corner from the queue into the desks. I did write and complain but no reply yet. Now the home department is impossible for me to get round. It's so crammed I can't turn round corners and 1 aisle was too narrow which must be illegal. It's also the most stupidist pplace to have narrow aisles as it's where all the glass and crockery is and they were in danger of me hitting the display and knocking it all over!! It was very tempting to have an 'accident'.
I also managed to eat a slice of cake in M and S - the capuccino sliced one so pleased.
Last night we had friends round and I had pureed Indian curry but the rice I managed withe puree. I did manage the roasted vegetable crisps and houmous and a few olives before the food was ready. The olives did feel as if they going to get stuck so only had about 4 which was disappointing as they were such lovely and garlicky ones.
Woke up this morning at 6am - these bloomin' bowels and needed a cup of tea and will go back to bed in a mo.
Roll on tuesday and the CT scan. Just hoping I can get through the next few days before the jaundice starts to get itchy as I'm dreading that and then hope they can see something that is operable and not painful and need to start chemo again. Think if nothing shows then will demand that I have urgent endoscopy and ercp (that means they look into the bile ducts) and referral to liver specialist as I don't want to wait any longer being this colour and darkening day by day. I'm also very desparate for something to be done so that I don't get itchy as well which is what happens if you are jaundiced as the bile goes into the skin and wee and not into the digestive tract and causes itchyness and being unable to digest food.
Carer's bit
Have been finding all the relevant details for my FAB assessment by Council to see if and how much I have to pay for my 4 hrs of personal and domestic care. The form and info is designed for the elderly as it lists all sorts of benefits for the elderly, pensions and nothing relevant to my income and expenditure relevant to the cost of my illness. We are trying to work out what extras I have to pay for ie - petrol for continually using car for everything especially to collect the children from child care, insurance for my scooter, special food to puree and anything else that is related to my illness that is extra. I think it will look as if I get lots of money as I get extra working tax credits due to the DLA element and I need to prove that this is not enough to pay for my care.
My friend has found me a carer for the 35 hrs and should be eligible for the £55 pw carer's allowance. Isn't that disgusting - the minimum hourly wage is over £5.50 and yet the Government see fit that a carer can earn less than £2 an hour!!! It's so wrong.
Help for Me
I'm now getting a bit more bold to ask for help especially when friends and neighbours who I don't know that well come round. I'm too weak to bend about and the kettle seems heavy so it's make your own tea now so this plea is bigger and needs a degree of organisation!!!
Quite often people ask us how they can help and we can't always think of things as other people are doing some of the more traditional help like houseworky things but this is bigger and requires a group of reasonably fit people to work together ideally
My sister in law has been wonderful and been round to help sort out Laura's bedroom so that hubby can make a start at somepoint in building her a new bed so that she has more room in her box room and hopefully be more tidy. The boys room is another project he wants to start but I've gone into selfish mode and want our bedroom done first.
I spend a lot of time there and really would like to have a decent room to rest in and receive guests into when I'm feeling grotty.
I know the sensible option would be to pay a decorator but we can't afford that so the only option is to beg and plead for a group of people who can ideally work together - not good timing I know as school about to finish and people have holidays booked but will beg you lot anyway!!!
As I think I've said before, the previous owner loved borders so have swirly beige wall paper and pink swirly borders that run up and down any door and corner, around electric sockets and light switches!!! Interesting!!! Uum - really want to highlight an electric socket don't we!!!
So what needs doing is as follows -
Wallpaper needs stripping, plaster to be retouched as the walls are old and plaster poor. Then either wallpapering or putting up lining paper and painting over the top.
Skirting boards, door frame to be stripped and painted - ceiling could wait but that be nice but is really the icing part of the cake so not essential.
Does anyone fancy stripping and repainting the slated doors on the 2 double fitted wardrobe doors (4 half doors) and 2 overhead cupboards (4 half doors)!! Thought not!! They could be taken off and done at home if easier although the framework needs repainting.
Hang new curtains.
The carpet can stay as it is beige and we can live with that.
Then we need someone to remake our bedhead as it is material covered and needs repadding and recovering and to match new curtains etc. Anyone know someone who could do that?
So with bated breath, dare I ask if there is anyone or a group of people free to have a decorating session asap with the thought it can be done over a few days and not last for weeks - many hands make light work!!!
The room's not that big and there's not that much furniture to move and it is the tidiest room in the house!!! Really begging and pleading now!!!
Any ideas/help welcome? Please don't be shy!!!
Can't really believe I've got to this stage in my life and desparately want the bedroom doing but it was done 11 years ago by the previous owner and I would like to be comfortable and happy and relaxed in our bedroom in the next few months as no doubt will be spending more time there. Bad timing on this cos of hols but if you're local and have some time and can do anything to help, it would make me very happy. I know I have friends/family who don't know each other but should be able to work together on this so if you could help at all or know someone who could Please could you either email me or leave a comment here so that I understand who you are.
Thank you - don't why I didn't think of this earlier in the year!!
Kate