Awake and up all night

Unfortunately it wasn’t a video call, Gill! I have been a mixture of angry and upset over the whole thing, but the anger won out, so on I go. 

It’s really good for you to have your daughter as a knowledgeable support to help. I decided right at the start of the process I’d do everything myself, whereas I recommend to others they get help-there’s that pride again coming to the fore! I’ve learned a lot as I’ve gone along so I’m hoping that I’ve learnt enough to do a good job of defending myself. Some people know the system very well and everything about how it works but I didn’t because this was a new world for me. 

Now it’s done and going in the post tomorrow so I’m going to put it out of my mind because I’ve got lots of other things to be getting on with! I’ve dealt with worse.

Sarah xx

You certainly have, and have my utmost admiration for how you've coped.  I very much doubt I could have done what you have, honestly.

Yes, put it out of your mind and file it under pending.

I was thinking about you when I was sitting outside this afternoon... have you christened the coasters yet?  It's been warm but windy here with the odd tiny shower, so I'm guessing it's been similar approx fifty miles south.

Love Gill xx 

I'm learning Steve, there's better ways of cutting the benefits bill, not taxing companies out of business, making it too expensive to employ people and  enforcing the minimum wage.

Eddie xx 

Hi Sarah, I have to say I was and still am a complete numpty regarding benefits, if I hadn't had my nurse pushing me on, and guiding me, I would have probably not even bothered appealing, I'm still not sure how relevant doing my 2nd form was, but I was going through a really difficult time, and I remember my oncologist letter read, the gentleman can only walk 15 meters and may only have 6 months to live, that really cheered me up, lol.

So basically, my friend, their calling you a liar, knowing it's not true, as they have absolutely no evidence to back it up, have you asked your consultants for written support to back you up, if I know one thing, there unlikely to contest their word, and how their allowed to insinuate we aren't being honest in the 1st place, with no means of backing it up, should have repercussions for them, be strong Sarah, your a good soul with a big heart and honest to a fault, you will be successful.

love Eddie and Sheila xx 

I have to just look at the garden through the patio doors unfortunately…I can’t go outside without help as I can’t actually lift my leg over the patio door frame or the back door so unless my OH is home, I’m inside. I can walk a very short distance with 2 sticks but it’s not safe without someone else being there in case I fall. 

The coasters are sat on the dining room table waiting for a nice weekend day. It was nice here today so I envy anyone who can just walk into their garden and take a seat in the sun! 

I’m here on my own for 10 hours a day in the week, so it’s just the house for me. It’s impossible to get my wheelchair out the back on my own so it’s just a very expensive ornament that only sees the inside of Asda or Morrisons once a fortnight! 

Sarah xx

That’s so kind of you Eddie. I’m waiting for a letter from my surgeon and she did say she would do this for me. My gp is on leave but should be back this week where he’ll  find my request for a letter, and my counsellor has already written me a 2 page letter which I think should actually be enough on its own! It made me cry with its kindness and empathy.

I’m an honest person-I would not think to tell lies, especially about my life and medical situation-nobody would choose it. it didn’t do me any favours to be pleasant on the phone because that went against me, which is really outrageous. 

Actually, I did smile at one section. She was obsessed with asking me what I would do if I got lost outside. I said that wouldn’t happen as I’m never out. She kept asking the question in different ways, and I know she wanted me to say I’d use google maps, but I actually can’t! So I just said even though it wouldn’t happen I’d phone my partner to come and get me and that shut her up for a minute! She’s admitted on the form I cannot walk 20 metres-how am I going to get lost? Just nonsense. 

Sarah xx

Aw Sarah, my lovely.  And they say you don't deserve financial help.  I'm devastated lass, you're all but housebound and I can't imagine how that must feel.  I know my mam was housebound in her latter years but she was in her 90s then, and we went as often as we could to help her.

I wish we lived nearby cos I'd come and take you out in the chair for walks or help you out to your garden, I really would.  Are there any volunteer services that could provide similar?  Or maybe you're independently minded and wouldn't want that.  I wish there was something we could do, but being spread around the country it's a no no.

I'm glad you've got your little cat for company but don't feel alone through the daytime hours as we're with you in spirit, and here virtually all the time.

Sending hugs and love xxx

Hi Sarah, that just about sums it up, why assessing people with serious and often multiple health conditions shouldn't be left to someone who has no idea of the realities of our situation, and who probably have instructions from above which puts them in a difficult predicament, no doubt anyone with a conscience won't be considered, 

love Eddie and Sheila xx 

I’m used to it now Gill, but I do miss being able to get out. There are local services, but I can’t really engage with strangers-my issue entirely-but I’m ok with my little cat-she’s curled up awake beside me just now hoping some little moth might come in the window so she can have something to chase! 

It would be nice sometimes to have company for a natter but I’m ok with my own company usually. This forum has become really important to me over the past few years as a good place to chat to folk-I’ve met some lovely friends on here, and I do like “meeting” different people from all over the place. I look forward to coming on here and seeing familiar names and a thread for chatting like this one has been a really good addition to the groups. I’ve kind of taken it over tonight so we need to be talking about something else! I fell asleep for a little nap but I’m wide awake again.

Sarah xx

I couldn’t do that job Eddie-I’d be on the side of the person on the other end of the phone getting too involved in finding out if they were ok, so I wouldn’t last very long! I’d be giving them more, not taking it away.

Like a lot of people in my situation, I can’t help thinking their only mission is to save money and they just find any way to do it, regardless of who they’re dealing with. I’m not a real person to them, I’m just the next person on the list to be phoned and see if they can take some money away. I wonder how they sleep at night. I don’t think I could.

Sarah xx