Lost in the fog!

My first thought this morning was about how much I desperately needed to go back to sleep. I wasn’t just a little bit tired either, I was bone-tired. My head sore and foggy, my eyes exhausted and refusing to work with me; every muscle tense. My mind wanders of it’s own  accord, worrying already. Dreading what the morning might bring. I’d just realised what day it was – Thursday,  so no regular carer.  Next thing I heard was a shrill  ‘buzzzzzz’. Slowly, clumsily I snatched at the reciever, mumbling ‘ hello’ as brightly as I could. An unfamiliar accent repeated my greeting. My head searched for a name to match. Eventually, the person appeared after shedding their outdoor things, and I relaxed a little when I saw who it was.

Things got off to a bumbling start. I continued to struggle to wake; blinking my eyes furiously, doing my best t issue instructions as to what was where and what needed doing. An hour and a half later, I was clean, and dressed, necessary medical things over for now too. I remember not feeling any let up in the exhaustion. If anything, it was worse. Double strength coffee,  white toast snd chocolate spread. I was interrupted mid-way through by another person; another medical procedure. My breakfast finished eventually, I was too exhausted to hear my phone beep. Eventually, woken by a call and the promise of a visit from two dear friends, I remember feeling heaps better after their visit. The rest of my morning passed insignificantly by. daytime telly with a story about a young lad with a rare condition, his constant companion a massive, but cute canine.

Eventually, the afternoon appeared, bringing with it a trip out in the sunshine with carer B. Yummy food, a walk, a nap. Only two hours left now. My head finally clearer, I’m off to work on something else, providing I don’t fall asleep first…

Welfare State: The terrified get more terrified as PIP looms large

This post is in response to last night’s Dispatches programme on Channel 4. However, you should be able to follow this post even if you haven’ t seen it. It is also in response to the ‘daily post’ as it is the antithesis of my ‘happy ever after’. Read on to find out what my happy ever after actually is!

Disability Living Allowance (DLA) currently costs the UK economy 12 biliion and is paid to 2 million adults. The government wants to save two billion pounds by taking half a million people off the benefit. ‘Dave’ says anyone who has had to fill in the forms knows they need changing. He’s only half right. Anyone with a dependant adult who can do nothing or almost nothing for themselves is relieved that they can simply tick a few boxes, instead of revisiting the hell of the current form making them list everything the person could not do and why, causing emotional harm to the person who fills in the form. For anyone else whose severity of disability falls in between two check boxes or fears they are unlikely to qualify, their fears are overwhelming and varied. It is all of this which has given rise to the documentary.

Esther McVey, the current Minster for Disabled people, says DLA did not take account people whose disabilites weren’t physical. However, I have read a blog by a blind person who gets money towards aids and mobility now who fears they will get nothing from PIP,  read a news article about a woman with profound and multiple learning difficulties who was assessed as fit for work, and read a carers opinion that while the understanding of mental health problems was limited on the DLA form, on the current work capability assessment forms it is even worse. Who is to say the PIP form will be any different? Also a major difference between the two benefits is that DLA focused on ‘self-care’ where appropriate wheras PIP focuses largely on people being ‘cared for’ therefore ruling out hundreds of people. I guess this is the governments aim, but it puts understanding of how disability affects people back by 20 or 30 years. Esther Mcvey the minister for disabled people argues we need a benefit which is “fair, clear and sustainable”. Few would argue with that. However, the Goverments arbritary restrictions on how far a person can walk being the condition for the mobility part of the benefit causes problems for thousands of people who can walk it but it would take them a long time, cause them to be excessively tired, or be in excruiating pain, or a combination of all three for some, including me. Add in the thorny issue of public transport which also affects thousands and you have problems galore, as adepitan explained in the documentary.

Paralympians explain it got them to the paralympics but also they have the same difficulties as other disabiled people. They are neither superhuman nor more able, argues Natasha Baker. Likewise Sophie Christiansen worries she will lose her car, and asks “what does 200 metres tell anyone?”

The DWP’s statement says that the 200 metres has to be completed in a timely, safe, and reliable way. In my opinion this may well be the saving grace for many like Christansen and Baker. However, this caveat was only re-introduced thanks to a successful campaign by disability activists after the government tried to remove it.

Re-assessment is another issue. People were previosly on benefit for life if their condiction wouldn’t improve but now will be tested regularly.  Lawrence clarke argues that he is asking for the support he needs to take control of his life and how is reassessing him saving money.

Esther Mcvey says 50 percent of people don’t have medical evidence to back their claim, however if goverment wanted evidence they’ed only have to ask to see the form I submitted when applying for income benefit or ask to see my MASSIVE medical notes.

However, is this type of documentary helpful in raising awareness of the issues both to disabled people themselves, and the general public, or is it simply scaremongering, ramping up people’s anxiety unnecessarily before they’ve even seen the final form?

There are more concrete worries as well because the company being paid almost £400 m to assess people has a “controversial track record”. I have to say, that is some understatement.  ATOS are the French IT company who asses people’s eligibility for income replacement benefit called Employment and Support Allowance if someone is unable to work. However, ‘widespread protests’ by disabled people and a cost of appeals against desicions of  £50M a year; 40 percent appeal and 40 of those desicions are overturned. None of this is likely to fill disabled people with confidence. Even the ‘Public Accounts Commitee’ have roundly criticised both ATOS and the DWP.  ATOS however deny everything and say less than half a percent of appeals are now due to mistakes in their reports. Esther McVey disagrees too saying ATOS keep within the government’s “strict rules” and disabled people are entitled to give their opinions on the process of assessment. Sorry… but is the disability minister even listening?

There are further questions over whether ATOS are fully prepared and qualified to carry out the new assessments. Many, apparently, will be undertaken by physios. Sorry,  but a physio does not have the medical training to understand the problems my surgery caused and continues to cause, or the way one thing impacts on another.

A former marine casts doubt over the thoroughness of the assessment process and says the nurse was shocked at the sight of his prosthetic. It doesn’t bode well! He did however win his appeal.

Barroness Tanni Grey-Tompson says changing DLA itself was preferable, but the goverment wanted sonething that didn’t sound so big and expensive! People are either superheroes or scroungers, regardless of fraud figures, she says. I have to say I agree with her! By enlarge, the government have the mainstream media on their side in helping to perpetuate these myths in my opinion. Barroness Grey-Thompson says she “doesn’t want to see disabled people ghettoised and locked away” as all progress made by disabled people will be lost.

“DLA has allowed disabled people to live independently in a society that’s not really built for them” says Adepitan. For me this is the crux of the issue, and in my opinion something you only fully understand once you are in that situation yourself. Only time will tell if some of the worst fears are realised.

Today’s daily prompt asked me if I am living my “happy ever after” and if not, what would need to change for this to happen. In an ideal world I’d be married to mr right,  be able to cope with a least one bairn and potentially be working! oh and be living in a supportive, understanding society!!

Realistically, I’d settle for the cuts being more widely spread, and for the current reforms of both DLA and the NHS to be revoked. Instead, DLA would be reformed from within with a different, capable contractor at the helm. As for the NHS, current attempts to privatise it would cease and money would be saved by the implementation of effective, preventitive measures,  and more front line staff would be employed not less, all saving the government pots of money in the long-run. The end.

More clichés than I thought possible!!

I had to read today’s daily prompt a couple of times to get sense out of it. I ended up looking it up as I had never heard it. On the same site was a massive list of all possible clichés, ever with country of origin and its popular meaning. Still no inspiration, so I started to think about the original phrase.
I couldn’t relate to it because I couldn’t think of any recent opportunities, no list because I thought of it meaning you were better sticking with the job you had instead of fighting for a promotion that may never happen. Anyone with any sense of ambition surely woyld not stick to this? Then it hit me. That’s what benefit claimants who could be working do. Stick with the opportunities benefits gives them rather than search for a job which may not materialise and may not have the same income. So they stay stuck. Someone needs to boot them up the backside then?! That’s an opportunity worth volunteering for! !

oh so long ago..

Today’s daily prompt: Dig through your couch cushions, your purse, or the floor of your car and look at the year printed on the first coin you find. What were you doing that year?  I found a pound coin dated the year 2000. Seems as though it was another lifetime altogether. For one thing, I was still in high school, in the fifth year, with another year of school left. If I recall correctly, that was the year we had to begin to seriously consider which universities we might realistically apply to. It was also the year of much hard work and tests and exams. The first year of something baffling called ‘Higher still’. really don’t know what else happened that year. I think it was the year I had my first boyfriend. I shan’t elaborate, tho he was lovely. Thirteen years ago I had no idea of the struggles to come. I an so glad I didn’t know. This should be proof enough that we are best not ask God what is to come even if it seems like a good idea at the time, and even if we want to know!

My lovely Godly Gran!

I’ve not had the energy to post in the previous few days, or else other things have taken priority. I have thought about this particular post, and I think I’m ready to write it out of my head. I love this daily prompt from the 17th asking about mentors. I am both fortunate and privileged to have had a few wise and Godly people in my life, including but not limited to my Mum, My friend who is also key-holder and tablet-overseer, among other things, and a number of friends. My Gran though has been there for me through thick and thin, as have my other grandparents, and my parents, and for that I really am Blessed with a capital ‘B’. Since my Grandfather went to be with Jesus when I was about 15, I’ve gradually got to know my Gran in a different way. One step removed from my parents, but just as reassuring  and a wonderful listener, we have had many conversations over the years, including many debates, and times when we ‘put the world to rights’.

If I have done anything which my Gran has felt is out-of-order, she will tell me straight. She has also mopped up many tears, and along with others, prayed for me every single day. I will never truly know the results of all those prayers this side of Heaven. However, times such as when I have a big fall or whatever, I have known God’s peace, and it’s never been as bad as it might have been. The same goes for day-to-day health. By rights I should have more hospital admissions and infections than I do, given my medication and so on, but I am convinced all those prayers have kept me well.

There have also been times when, choked with emotion or a breaking heart, my Gran has prayed with me over the phone, or just after the phone call has ended. Times when I have been unable to pray for myself. She has also when need by reminded me of what has gone in the past, things I’ve been though or come through, things God has brought me through or times he has provided.

The one lesson that sticks in my head, above all is that Gran has taught me to be thankful. Even in the darkest of days, to find three things to be thankful for. It is something I am still learning, but I do so know the importance of it now. I am glad for her forbearance with me in the times I have been out-of-order and the times she has spoken her mind in love. I am thankful for these times also. I guess it’s all these things put together combined with wise, Godly wisdom which makes her a kind of mentor really. Mostly, she’s Gran, and I love her to bits! I am truly thankful for her, and all that she’s taught me and all the fun times we’ve had too. Hopefully there will be many more times to come.

I’ve chosen to schedule this post on a Sunday as this is when I often specially think of her, singing praise in Church to her Lord and Saviour Jesus, whom she loves very much. Unlike me, Gran has a wonderful singing voice 🙂 I’m hoping I can visit her at some point this summer, as a visit is long overdue. Those of you who read this blog who are Christians, please can you say a prayer of Blessing for her after you’ve read this?! Thank you!

Great Songs no fillers!

Today’s daily prompt: Write about what you did last weekend as though you’re a music critic reviewing a new album.
————————
This was one of those that only come along once in a while. So good you replay it over and over, every detail, every nuance. The First have was The One with The Wedding. Great music for a party, the sort of music everyone loves and can join in with. That everyone loves, with few exceptions. So good you want to dance. It makes your body move and your spirit sore, and wish you could write music like that. But hey, let’s leave it to the experts, the ones who meet The One, and can show it as such, appreciate it and grow it, and protect it, and mature it for years. This is their gift, just as others have the gift of making music. Some of the songs on this album are traditional, but the music does not suffer, rather it is all the richer for it. This album could be the sound track to the kind of party that goes long on long into the night, but it is so good nobody cares.

Part two. Another day, a plan for another party

The second half of the album sparkled, full of excitement and promise. The final couple of tracks sang of a future full of love, fun and good times. They are as much a part of a good party as great food and good wine. This is one that will stick in the memory for a long time to come, a success that will not be easily repeated.

not your average memories…

Wherever I write about food it’s never that well read. I don’t know whether I lack the skills to adequately describe it, or people don’t expect me to write about it, but this time this post is to do with food. For me though, the important bit is the people I am sharing my favourite meals with. I generally love something I have not had to make myself!

My favourite meal about 4 months ago was fairly simple. I was at my favourite pub, at a table at the back of the restraunt, in the corner. Someone I thought I was in love with was holding one of my hands, and chatting away, leaving me free to eat with the other hand. To save myself some embarrassment  I had picked finger food I thought I could eat with one hand. Perish the thought that I might have to spoil the first date/meal out/pub date by asking my date to cut my food for me! I had taken a risk and chosen messy food. Risky strategy for someone with cerebral palsy. Dare I take a risk and say there is something a bit sexy about messy food?! (TMI??!!) cheese, nachos, salsa, sour cream, guacamole. A huge plateful meant there was no need for chips, a starter or a desert.

I do not remember what we talked about. I just remember the general things. How it felt to finally hold hands, to see the face the voice belonged to, to have the opportunity to do such a human thing and feel ‘normal’. The food sounds remarkably plain, even if you add in a half of draught cider. In my opinion, good company can make the plainest of food taste amazing, especially if it’s something I make for others and it turns out well, no matter how simple it is. It is often such a delight to do something for other people for once, instead of me being served.

I have no idea how long we stayed in the pub. I remember the minutes we waited for the taxi. I will spare you the details, save to say I was glad I hadn’t eaten a massive meal when my date decided it might be fun to lift me. We are no longer in touch, because things came to a natural end. I hope one day I get to have a first date with a gentleman who may be ‘the one’ as this person did not prove to be. For now though, I remember it with fondness and satisfaction, and somehow separate from the rest of it.

The next time I went to this pub, I went with friends, and had what was my favourite meal from my childhood. SCAMPI, (shrimp?) and chips. Homemade scampi no less, and the obligatory half pint of cider. It more than just satisfied my hunger, as it proved to live up to the memories too, of countless childhood fish-shop suppers. Hot, salty and delicious. I wonder who I will visit my favourite pub with next time?