Wednesday, June 14, 2006


Having a rotten time of it the last day or so. Yesterday (Tuesday) was another day where I had to spend the entire day in bed, and couldn't focus properly on any task for more than a few minutes at a time. For instance, I could read a couple of blog entries, type a little response, and then have a break - but I couldn't read a whole chapter of a book.

For dinner I ended up phoning my parents and asking if they could pick up some pizza for me. I hate having to do that because it makes me feel so dependent and I know it interrupts their evening too, but it's part of this thing about promising to eat one hot meal a day, if I can't sort it out for myself then I am obliged to ask someone else to sort it out for me.

Chris (my stepdad) arrived a bit later with pizza. He tapped on my door (they have keys so he had let himself in the main door, but still knocks on the actual door of the flat because it's my flat and he respects my privacy) and I got up, lurched to the door, wrenched it open and promptly fell over backwards into the bathroom, where I landed heavily on my bum and narrowly missed knocking my head on the toilet.

Chris had his friend Colin with him, so that added an extra dimension of embarassment. They put the pizza down, helped me up off the floor and onto the sofa, gave me my pizza and left.

One slice in I realised I'd forgotten to give them the money for the pizza. I was mortified. How could I have done that? Why hadn't Chris prompted me? What on earth would Colin think of me and how my mum had brought me up? My purse was sitting right there on the table, it was just that it had clean escaped my mind to give Chris any money this time. I phoned mum and she calmed me down and said I could give them the money the next day, and to shut up and eat my pizza.

It's for this reason that today (Wednesday), despite not feeling great, I decided that I felt better than yesterday so I was going to damn well go to my parents' house and settle the account ASAP. Which meant I was the first to hear the news...

They've finally set a date to get married!

The idea of marriage has been floating around for a while, ever since it became apparent that Chris's next of kin was no longer anyone he was in touch with or who had any idea of his wishes. If something happens to Chris, he wants my mum to be there in the hospital, being asked for permissions and there by his bedside and so on. Vice versa too, although if something happens to mum, Davina and I are "official" next of kin and we both love and respect Chris enough to make sure that he is regarded as family too.

Naturally that's not the only reason for a marriage (there's some love stuff and having been in an extremely solid relationship for several years) but that's what tipped the balance and made them decide to get engaged to be married, rather than just continuing to live together ad infinitum.

The date set is mum's birthday, which will be in September this year. It's not concrete yet - mum needs to find her Decree Absolute from her divorce from my biological father and then she and Chris have to go to the register office and make sure they *can* get married on that date. It's a Thursday so hopefully it won't be a problem.

It'll be a small wedding. At present the list is: Mum, Chris; mum's best friend and her husband; Chris's best friend plus partner if he has one; me plus Steve if he can get the time off; Davina plus Pip if they're still together; and mum's brother and his wife if they can make it.

I'm so happy that mum's got someone who makes her as happy as Chris does.

They told me off for having a soppy grin, would you credit it!

*continues to have soppy grin*


Sally said...

Hello Mary

I followed your comment on the Goldfish's blog. You don't give an email address, so I hope it is ok to post this long comment.

I have a young relative with ME, she is late 20s, and has managed Uni in the good times. She too has had days of mind numbing pain and weeks in bed, so I appreciate your situation.

You may already know all that follows, if so please forgive, but if not, I hope it is of use:

Reason I am here is your reference to CAB and the Tramper.

First, CAB - they should visit you, given your health and energy levels. Request a home visit for any necessary follow ups. Also, have you considered that you are eligible for home help if you cannot always make yourself a hot meal. If you don't want social services to provide someone, through the Direct Payments scheme you can employ someone of your choice for the help you need. Shopping, laundry, cleaning, and employ someone to help you employ someone ... it is not as complex as it sounds.

Second the Tramper - yes it is fabulous and have you seen the website
for great pics of Trampers in all situations. But it may be too big for some indoor situations, such as shopping, cinemas, pubs, lifts in tower blocks, etc. And steering with handle bars, either on a buggy or a Tramper, is not as comfortable and energy sparing as a joystick on a wheelchair, where you can rest your arms supported on the arm rests. I grappled with this fact for ages, before deciding on a power chair - yes a wheelchair; I can walk, but I get so so tired, and with a wheelchair I do so much more. I took me a year of applications to national charities to fund the powerchair, as I did not have the finances to buy myself.

That led to using the mobility component of my DLA (you do get DLA I hope !) to get a wheelchair accessible vehicle from Motability. See their website.

I know from my young relative's experience, that going down the road of such mobility aids is maybe not what you as a young lady may want to do, but if it enables you to do what you want on good days, and enables your independence, then it may be worth exploring.

If for whatever reason you don't want to add this to your comments page, through 'comment moderation', I will not be offended and my email address is on my profile if I can be of any assistance.

Anonymous said...

Yay! I think you should say to your mum " an internet wierdo says congratulations on the impending marriage"

Mary said...

Hi Sally,

Comments is all good :)

I have trouble accessing my local CAB as emails bounce and their phone always goes to one of those answerphones that just has an answering message, but you can't leave a message on it. I guess this makes sure I only use it when I desperately need to.

I don't know where to start in getting social services involved in my case. I know that things like Direct Payments and so on exist but I don't know how to access them. Even when I swallow my pride enough to look into it, I get confused and stressed out before I find the metaphorical end of the roll of sticky-tape.

As discussed in the previous comments, if I had the energy and brainpower to access everything I'm entitled to I would be capable of going back to work instead!

I do get Incapacity Benefit, and DLA at Middle Rate Care and High Rate Mobility.

I can't have any kind of scooter or powerchair right now because I still live in the flat I live in before I got ill. This is on the first floor. There is nowhere downstairs that I can store a scooter or powerchair - it's tricky enough storing my fold-up manual wheelchair. I'm on the list for an accessible flat but the odds of getting one are slim.

Hopefully I'll be able to move in with Steve soon, and then I will be able to have ground-level storage space for mobility aids, not to mention the love, care and support of a wonderful man.

It's a very good point you make about scooters vs powerchairs - as you can see I haven't really gone into this in depth.

Thanks for taking the time to post such a thought-out comment!

Hi Roxy!

I rang my mum and, as instructed, said "an internet wierdo says congratulations on the impending marriage".

She said "which one?" and didn't even seem that surprised that it wasn't one of the ones she's met...


aibee said...

you're gonna have to call your mum again to tell her that there are now two internet weirdos congratulating her on the upcoming nuptials.