Category: ESA


J was home but in a lot of pain and discomfort, we reapplied for ESA and J was awarded support group. Not surprisingly as he couldn’t move without someone pulling his leg as it was lifted or moved to the side or lifted down, which meant he couldn’t go anywhere without help. Once upright with crutches he was kind of ok as gravity acted as a pulling motion, I try to explain it to people as; do you remember those little wooden toys kids have, usually an animal of some sort. They worked by pressing a button underneath and as you pressed it the animal would collapse and when you let it go, it would miraculously ping back up to standing, all the seperate bits back together (held by elastic). J’s leg was like that, the tension had to be held to keep the cement spacer in line with his bones if it wasn’t well let’s just say we all became familiar with the sound of J screaming. He would get shooting pains as well that would make him yelp in pain and some times literally jump in his seat. He would get odd sensations of wetness or a sensation of someone touching his leg, and neuropathic pain as well. He almost always got these sharp painful pains just as he was falling asleep…

The first time he had to have the dressing changed was awful, the poor nurses and poor J. It goes against all their training to pull a leg that’s so badly broken and operated on, it took a few attempts before they really grasped pulling his leg, lol no pun intended…  In order to change his dressings the nurse’s had to lift it out of the cast, undo the wrapping, change the dressings, re wrap it and then put it back in the cast, all while pulling on his leg, I think every district nurse for miles came and had a go, they where great though working fast and as painlessly as possible, we can’t fault them we would never have got through those eight weeks with out all the nurses that came and helped, we owe them a grate debt.


Preparing to lift J’s leg out of the cast, all the cotton wool padding is cut so the nurse can lift it out, while me and another nurse prepair to whisk away the old padding and the cast so the nurse can put his leg back down cairfully all the time pulling on his leg. I cropped the photo so none of the gory bits would show, J wouldn’t want you to see those bits.

We got in to quite a good rhythm towards the end opening the cast, cutting the wrapping, lifting his leg out of the cast on to the footstool with his foot hanging off the end so the nurses could check his foot and all his other scars then re wrap the foot and anckle, then the lifting nurse would lift his leg, while we moved the footstool and re position it so J could rest while they wrapped the shin and knee area then one more lift and footstool move so they could wrap his thigh. Then the final lift and pull so me and a nurse could re position the cast and the lifting nurse could gently lower the foot and leg back in to the cast all the time pulling to create traction. By the end of it we would all be sweating, and if we all got it right J had suffered only a little pain. 


You can just see in the back ground the bottom half of the cast that we had to lift J’s leg in and out of to dress it. During the eight weeks J started to get a pressure sore on his heal, so sometimes we had to take the top half of his cast off at night so his leg and foot wasn’t under pressure for a few hours. The nurses tried everything to prevent a pressure sore forming it came close but they managed to keep it at bay.

Getting up and down the stairs was another challenge, I had to walk behind him going up as he was wobbly on his feet, I hate to think what would have happened if he’d fell I doubt I would have been much more than something softish to land on… coming down was safer, on his bottom with me holding his cast laden leg… one step at a time as they say…


(He’s shy) I adapted J’s trousers and made a Velcro fastener on one side so he didn’t have to worry about getting his leg in and out of a trouser leg.

We settled in to a routine J’s leg started to heal and his pain levels reduced.

and then…

 he fractured his right wrist in a bad fall, it wasn’t the first or last but it was the worst… 


now J had one ordinary crutch and one gutter crutch to walk with, and a wrist in a blue cast from his fingers to his elbow.

Sometimes I think if someone wrote this as a novel everyone would think how far fetched it was…

Slowly and for J very painfully the eight weeks passed as summer turned to autum, another autum missed by J, his favourite season, we finally reached the magic eight weeks and it was October 2016 and time for the second op, replacing all the prosthetic metal work and seeing if they had managed to kill the bug…

J once again left for oxford and we waved him goodbye yet again… 

Despite J’s worries the second op went well with less complications, this time we all went up to visit. J loved seeing our son and having company in the first few days after his op… not long after we came home they got him up and about starting physio, and with in two weeks he was home, original bug free and on anti fungles for a possible secondary infection, but one much easyier to get rid of… J started physio, and discovered his left, still non bendy leg was now two and a bit inches shorter than the other hence all the falling over, he’s since had special shoes made which make it easier for him to stay upright, till he takes them off and forgets his legs are difrent lengths… take your laughs where you can get them folks… 

Id like to say at this point a deeply grateful thank you to J parents for taking me and our son to see J so much over this awful time it really helped me and L and I know it helped J to have us close by for at least some of the time, I know it must have cost a lot, and not just in energy… 

J passed his first year of the PGCE and when talking to his teachers and apologising for the quality of his final essay, his teacher said when you have a teacher who can teach students with such profound support needs, as well as you do, we don’t worry about the quality of an essay… how lovely was that….

I passed my TDL as well and I had started back to work on reduced hrs for obvious reasons…regardless of my caring responsibilitys I had learnt a valuable lesson about the limitations I sometimes forget that ME and Fibro place on me and how pushing those limitations can be bloody stupid… I’m still trying to recover, I’m not really managing that yet, consiquently, I have not extended my hours even now.. I learnt my lesson I have limited capacity for a reason and I’m still paying the piper for last year… 

Our son has been diagnosed with high functioning autism to add to the sensory processing disorder, he calls it asparagus syndrome I like his sense of humour. It’s nothing we didn’t expect and he’s still just L at the end of the day… with all his joys and challenges… 

Fast forward to July 2017 lots has happened this year, J completed his commission a bitter sweet experience, and he’s going back to college to complete the second year of the PGCE. It’s going to be difficult for him but he wants to get it done because…


(J’s commission, Sorry about the iffy photo)

 J’s having counselling for a possible amputation, as well as meeting up to chat with people that have had the op…

 J’s new prosthetics won’t last ten years probably, maybe a good five or eight maybe, he’s 46, the older he is the harder it will be for him to adjust to a prosthetic limb.  I don’t think he wants to lose any more years to the non bendy leg. It’s is most likely J will have an above knee amputation after he finishes college in 2019… the Long Road continues… 

Oh and I have been diagnosed with AF, Atrial fibrillation… 😊 I have a heart condition… YAY…

I think now you can see why it’s taken me so long to put this all down.

And just because they can the DWP have just told J that his ESA will stop in September as he will no longer qualify under the 365day rule… again…

And worryingly J has been complaining that his leg hurts… I’m hoping with every breath that it’s a healing pain…

and I’m still really really tired…

Live long and prosper my people…

Dxxx

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June 2016 and J has been told he needs further surgery in fact two major operations with an 8 week gap between them. This is the surgery that was cancelled in 2015 because it was to risky… The surgeons would remove all the prosthetic metal work from Jons leg, three inches of prosthetic bone below the knee, the entire knee and thirteen centre meters of prosthetic bone above the knee, plus all the anchoring titanium rods that reach from his hip to his ankle almost.. It was infected with a smart bug that could hide from the antibiotics and learn to adapt to them so it all had to go, then they would place a sergical antibiotic cement spacer in the gap and also move one of his calf muscles from behind his leg and flip it over to cross over the top of his knee, the hope was that this would improve his ability to bend his knee and improve his mobility.

J applied for extra time to complete his course work, and applied to take a year out to have his ops and recover. He was still trying to attend class when he could but he was on lots of pain killers by this point and he was unable to walk with out crutches, this makes teaching hard and tireing even without the pain and med side effects. His leg had started to weep out of the red patch above his knee, his body’s way of reliving the pressure.

By this time I was finishing off my last two assignments, working way more than I should have been, thinking roll on summer. I desperately need to rest, looking after our son and also doing all I could to help J, whilst trying to prep for hospital surgery mode… I knew J was going to be pretty incapacitated during that 8 weeks and he was going to be home with me, I needed to prepair…

J’s admission date came and I bundled him off with his dad and as much college stuff as he could carry, we where going to have Skype sessions to get his final essay in  after his op… but things never run smoothly… J’s op was postponed for a week while they ran tests and a plastic surgeon became free to do the muscle moving part of the op. A gift really, J and I used this time to do most of his work, him writing me checking it and me finding his evidence among the reams of paperwork at home.

J had his op and came out of surgery, the surgeons had removed all his metal work, moved his muscle, and cleaned and filled the little red patch which turned out to be a sinus, a hole that ran right through to the centre of his knee where the infection was and worked like a siphon, basically sucking the muck out of his knee bringing it to the surface, like a straw. Ugh… He woke up groggy and in pain but ok, later that evening I got a call from his surgeon telling me he was having breathing difficulties and they where transferring him by ambulance to another hospital for a scan they suspected he had a blood clot on the lung, they said he wasn’t doing well and that they would keep me informed… well I didn’t get any sleep that night, calling everywhere I could trying to find him, eventually I found the right department in the right hospital and they said J was resting that his scans where clear and he was doing better… J’s version of events are very different and a lot scarier… the events of that night have left him scared, I think he’s developing some form of hospital ptsd… J was transferred back to the Nuffield a few days later…

J’s Mum and Dad had arranged to take me and our son up to oxford to see J the weekend after his op, however just before we left J called to say they might be letting him come home. We decided to leave our son with grandma and just me and J’s dad left to visit J in oxford just in case we had to bring him home… we arrived in Jons room on my birthday, best present ever 😊, and ten minuets later a whole crowd of Dr came in and told Jon he couldn’t leave till the following week because he had to have a pick line put in as the smart bug he had would respond better to introvenus antibiotics and that would give them more options later on, it made sense to all of us but I think that’s the closest I’ve seen J come to open rebellion, he really wanted to come home. 

 J’s leg had been completely encased in fibreglass, he had a full leg cast on but there where major complications, firstly he couldn’t move his leg without it being pulled, it needed to be held in traction while it was moved or he would be in agony, and I needed to learn how to hold it… gulp… the process of getting that cast made was a horror story of J in screaming agony while they lifted his leg to have the casting material wrapped around his leg. He was also going to have to have the dressings on his leg changed twice a week, his leg had scars reaching from his anckle to the top of his thigh, and the entire leg all the way to his toes was wrapped in cotton wool bandages to cushion the leg inside the fibreglass case. Changing the dressings on this leg that couldn’t be lifted with out someone pulling on his leg, that would be the same leg that was incased in fibreglass… terns out it had a lid, that came off but that in no way made it easy to do… was going to be a challenge, he would also need his antibiotics everyday so nurses where arrange to come to the house every day. 


J’s leg encased in a fiberglass cast…

We spent the next few days finalising his essay between drs visits and him sleeping. He was still in significant pain…

Me and his dad came home all six hours on the Sunday and had a rough plan to go back up on the Thursday the following week to visit again and hopefully bring him home… this gave me three or four days to get the last bits and bobs of J’s assignment together, fancy folder that sort of thing… But… on the Monday I was sitting at the computer printing out some paperwork that needed to be handed in with the essay when the phone goes and it’s J’s dad, J had just phoned he was being discharged onWednesday afternoon could we get back in time to pick him up.. what! I still had to get his essay handed in across county, not to mention sorting our son out… needless to say it all got sorted involving lots of panicking, mad driving around Cornwall dillivering essays and children to aunties and colleges, thankfully in the right order then we headed off back to oxford… phew… six hours for me to rest before the hospital I’m so glad I can’t drive J’s dads car… so very thankful for J’s mum and dad… as well as my own family.

We got to the hospital the next day and after many hours of waiting and packing and waiting more…

They finally let us go….

Getting J home sitting sideways in the back of his dads car was horrid, he felt every bump, every time his dad had to brake, and then we discovered… he had no pain meds in his hospital bag…

We tried to contact out of hours for help but they couldn’t help till we got back to Cornwall, J wanted us to press on home so we counted the miles all the way, we stopped once in Cornwall to phone out of hours again they said they would call us back but to keep driving home… they called ten minuets after we got home hours later, by which time I had found some pain relief in the cupboard and we decided to talk to our GP the next day… Grrr

We were home and the eight weeks where just beginning.

To be continued… Dxxx

Some days I feel really tired…

I had some news today that really made me look at the people around me with new eyes…

People you should be able to rely on to support and believe you… Don’t!

Is it because they don’t believe you or because they don’t see you…

On top of this sad epiphany about someone who I love and who I thought loved me and my family I come home

To a blizzard of emails, 

Mostly about a story going round that Sue Marsh is behind the new idea for a national united organisation for disabled people… 

Well the bottom line is that’s not true… Several people over the last few weeks have talked about it… Some of which have at one point or another worked with the network that Sue Marsh is associated with… Myself included… However all of us with this connection, involved in this new initiative, have not worked for the network for some time, most for many years… 

Personally I have never had a real conversation with Sue, that was more than 140 characters on Twitter, and most of those where in relation to Simon Stevens on a particularly vicious day… We’ve never spoken on the phone or in real life… I say this not to extricate myself from rumor but to point out that everyone thinks they know what’s going on inside a group or organisation… You really don’t… One day I might write it all out but today is not that day… 

Painting some one with the same brush as another is both cruel and exactly what this government does… This disabled persons a faker so they must all be… 

Ask yourself what does the creator of this lie or misinformation have to gain by undermining this endeavour?

I said openly I don’t agree with what Sue did, but I defend her right to work if she wants… 

Her right to define her own destiny… We all want that don’t we…

The national disabled organisation or what ever it ends up being called will hopefully be a united voice that supports and defends the other excellent DPOs out there rather than trying to replace or compete with them… 

It will eventually support individuals and campaign groups, with the unified voice of disabled people and with a fund that can be applied for.

This would be a significant voice for disabled people…

Who would want to undermine that…  ?

Dxxx

Hello again Folks… It’s been a while again I know…

Well where are we now… When last we spoke, J was waiting for his big ops that where going to take him back 100% and hopefully solve the amazing no bendy knee problem… J was due in on the 14th of October 2014… Which was cancelled… To make way for an emergency… He was re scheduled for the end of October… So he dutifully said goodby to us yet again and went up to Oxford to prepair for the surgery, something which took a great deal of courage. It was to be a big surgery to remove his prosthetic knee and bones and replace it with a antibiotic cement prosthetic version for six weeks while they tried to eradicate his bone infection and then a second op to replace it all… Which would hopefully not only get rid of the infection but also get the very expensive but non bendy knee bending…

He arrived the day before and went through all the pre op assessments and tests that they couldn’t do before hand, because we live so far from the hospital, prepared as best he could, had his last meal so to speak and tried to get some rest before the big day…

Day of the op came round I was doing everything I could not to freak out down here so far away and trying to focus on work, yes it was a work day for me… Only to receive a text from J saying the Dr wants some more tests done before he does the surgery… Fair enough I though he needs the most up to date information…
Two hours later I finish work, not knowing if J was in surgery or not and drive to my mums to pick her up before going home because, well honestly I really didn’t want to be alone while my partner underwent such serious surgery so far away… J phoned when I got home…

His surgery had been canceled less than an hour before he went in… His orthopaedic surgeon and plastic surgeon had just been to visit him and had explained that they didn’t think the surgery was worth the risk of further infection and potential further loss of mobility. They where worried that he was potentially infection free and thought that further surgery may give him another infection, that might get out of control. That unless they where sure he still had the infection or had some other reason to go in they where not prepared to put him at risk for possibly little improvement in his mobility. The high risk of another bone infection, that are notoriously difficult to get under control and cure, out weighed the other potential benefits….
Could they not have decided that 8 months ago before we lived off his redundancy money because it was pointless him getting a job?…

So he was coming home… Grrr and phew all in the same breath…

His doctors decided to take him off the two different antibiotics he had been on for eighteen months and wait and see if the bone infection re surfaced… His GP is testing him regularly and he has had a slight increase in his infection markers but we won’t know for some time if it’s significant…

So J came home relived he hadn’t had to go through more extremely painful surgery but frustrated that he would be more significantly disabled than expected for the rest of his life. However grateful that as a cancer patient in remission… thankfully still no new tumours have been detected… Touch wood… He still has a life to lead.

So now has begun the next journey for J, which is the journey back to work, and although his leg doesn’t bend and is still very swollen and painful he feels he can’t put his life on hold any longer, he needs to get a job… The ESA 365day rule dictates that we can’t afford not to… But what job, doing what? His previous experience had made him realise that most employers are not interested in employing someone with his health history or his disability, despite what the government says, he has come to dread that moment when in the job application process he has to disclose what he has been through knowing that far from thinking how tough and amazing he is to have survived all he’s been through, they will just see him as an employment risk and reject his application before he even gets a chance to talk to them…

So I suggested he went to see our local JCP disabilities specialist a lovely lady who I have had help from in the past, we made an appointment for later in November… In the mean time J found a job he was convinced he could do, cleaning in a local supermarket p/t… That was soul destroying for both him and me as I had to make him realise he couldn’t do manual work on his feet any more. All the jobs he has had in his life have been on his feet physical work. With the help of our physio, the lady who realised J had something more than a knee strain in the beginning, we managed to get him to realise he couldn’t be on his feet working like he had been in his previous job even part time, because of the strain it would put on his already not very well leg. But he also can’t do a sit down job because his leg loses feeling after sitting in a chair with out his leg up after only a short while… And like J said in a fit of frustration one day…

BUT WHAT F***ING JOB CAN I GET WHERE I CAN HAVE MY LEG UP ALL DAY… FFS…

I didn’t know but said lets wait to see ŵhat the JCP have to say…

I understand his frustration and I know it’s not all about his leg or his job but it’s also about suddenly being dependant… And being dependant on the person that you used to be the carer off, and who used to be dependant on you… must be very hard… I know it is for me…

The ESA 365 day rule is trapping people in to financial dependency on their partners leaving them with no financial independence from people that they may have difficult or abusive relationships with. This rule that states that a person on NI contrabution based ESA, can only receive Employment and Support Allowance for ill health for 365days regardless of how many years they have paid in to the pot. Must after this time be assess for income related ESA a fact they won’t tell you about… your money just stops, you have to request a reassessment for income based. Will only be awarded Income related ESA if the family income is below £7,000 a year. £7,000 a year for two people and in our case three people to live on… My working tax credit takes us over the top of that thresh hold despite my business making zero income for another year. But only just. Because of the tax credits we also do not qualify for school meals for our son and lots of other little bits and bobs that can make the difference. We are left three people living off the wage from a few hrs teaching and our tax credit…
Robbing Peter to pay Paul is becoming a way of life except Peter has no money either😊…

So the appointment for the JCP specialist rolls round, and she is as lovely as ever and tells J about a re training scheme he can do which he may be able to do from home but would most likely be a thirteen week residential course up in Plymouth as there are no centres closer to us that are doing the courses… We have many colleges and a university in Cornwall… Go figure… Or he can go on to work choice who will be able to help him look for work or go self employed or both… But agrees finding a job he can do will be tough…
We come home not much uplifted it has to be said… Me trying to be positive says well think about it at the very least we can go up to Plymouth to see what’s on offer… We’ve made it through the last few years what’s thirteen weeks… J just looks on with a face like thunder not at all impressed…

So at this point I decided I need to look for more work, obviously it needs to be something I can manage with the Fibro and ME, nothing to physical, to emotionally draining or requiring to much brain use as the effect on my cognitive skills that thinking has is huge… (No giggling) So I start looking… And I find a p/t job working for the SU at the local Uni, working to ensure the students get all they are entitled to… I think mmmm might be possible… But it turns out that the hours clash with my teaching so I don’t go for it in the end…
A few weeks later via another campaign I’ve become involved in saving the contemporary Crafts Course at Fal Uni… #saveourcrafts @saveourcrafts. I hear about another job vacancy one that involves teaching ceramics to adults and kids and folks with disabilities, that seems right up my street. It’s a bit far to drive being in StIves but I think we’ll I won’t know if I don’t try, so I decide what the hell I’m gonna try I’m not the best thrower, I’ve not thrown on the wheel for years but I know how to teach it… But I decide to run it past my boss first, I can’t afford to lose the little job I have. As it so happens I had an appraisal scheduled for the following week, so I get to the end of my appraisal which was glowing by the way… 😊 Lol… And I ask her if the college would mind me having a second although technically third job and she says no not at all but I must add that staffing levels at the college are like the Mary Celeste and if you want more hrs you can have them… So I said yes… Obviously needing to build up slowly but yes…
We went on to talk about other things including J… I had to disclose J’s cancer way back in 2011 when he fist got ill because it might have effected my ability to work. Caring for cancer patients being what it is…
We talked about his op that never was and his employment problems and she suggested he come to work for the college basically doing what I do… He’s got the same degree as me, he has experience as a carer and a non medical helper all he would need is a teaching qualification which he could do while teaching, and we don’t care if he teaches from standing up, sitting down or moving about and we already know about his health problems… I was gobsmacked, astonished but very grateful that not everyone sees disability as a problem. She gave me some info to see the college career adviser and told me to get back to her if J was interested…

Needless to say J was interested…
We had an appointment with the careers adviser and apart from J having to wait till next September to start a PGCE its all looking kinda good… He will need to do some voluntary work and shadowing but assuming that all goes ok it’s looking promising…
Except…
And here’s where I need advice he needs to do the PTTLS course first or what ever the equivalent is (it had a name change) Preparing to Teach in Life Long Learning Sector… And that is a thirteen week course that is not funded… It’s going to cost around £600 for him to do it and we are so beyond broke its not funny… How do we fund it? Has anyone got any inside funding knowledge that might help?

So this is where we are… Is there light at the end of this very dark tunnel or am I just seeing things….

Hugs to you all Dxxx
Ps to see the whole story so far select the access to work category and scroll to the bottom…

A few nights ago after six pm, I received an urgent cry for help and advice from a lady I know, who has herself faced major health issues with her son and is disabled herself. When completely out of the blue her brother who is also a vulnerable adult with health problems received a accelerated eviction notice from his landlord stating he had to leave the property the next day.

She desperately needed advice on whether the landlord could do this. Having had issues with private renting, I advised her about his rights re his section 21notice and googled some info on accelerated evictions, as well as who else might be able to advice such as Shelter and her local councils housing department. As well as advising that she spoke to a solicitor first thing in the morning…

This has seriously stressed two vulnerable disabled adults trying to sort this out…

Thankfully they managed to get hold of a solicitor, and their agency agreed he had not been given a section 21 along side not meeting the terms of an accelerated eviction notice so his landlord has to go back to the courts before anything can happen giving them more time to find him a new place…

And what caused all this? Yep you guessed it… the ESA backlog, it had taken so long for his claim to be sorted that his landlord decided he didn’t want him as a tenant even though his benefits had been sorted and his rent paid…

I can only image what would have happened to the vulnerable man if he hadn’t had a loving sister to help him out…

the solicitor who is helping this lady out also deserves a shout out and has been highly recommended by the lady in question as being very supportive and helpful re benefits and the BT as well as other things and works with legal aid is… Laura Webster… http://www.hopkins-solicitors.co.uk 01623 460460

This is what your propaganda and welfare reform fiasco has wort Mr IDS you are beyond saving and you will be judged one day…

#impeachDWP #NowPetition

So say we all… Dxxx

Hi folks..
I know its been awhile… busy busy as ever…
Our story is a twisty turny thing that seems to have a life of its own… at the end of my last post we had given up on Access to Work doing any more than helping with transport costs. We where still waiting to here from the DWP about PIP this was in March we had been waiting since September…
We where also waiting to find out if J was going to be made redundant… all on top of waiting for our sons SEN assesments three yrs and counting…
my fibro… J’s cancer  and looking after our son with SPD…
So now in the middle of August where are we and whats going on…

Well at the begining of April J was told he would be made redundant but would have work to the end of June… all the time working in a job that required him to be standing on his leg and in pain…(I have some choice words id like to say to them, they basicaly tortured him and set his recovery back possibly perminanely for eight months then kicked him out… grrrr)… At the tail end of April they told J he wouldnt be working through till june and he left the company at the end of the month… his redundancy package was all over the place and he was not paid when he was told he would be plunging us in to further debt… however temporary… at the begining of May he got the first half of his redundancy and we where able to sort most of our over due payments, paid and caught up on things we had got behind on when he had been off sick after the surgery.

At the begining of May J saw his consultant who thought he may have to have more surgery the prostetic knee joint seems to have malfunctioned very rare apparently… to be honest we are running out of rare things that can happen… (touch wood) we have to wait now to find out what, when, and if he has to have more surgery…

Towards the end of May J got a letter from the DWP apologising for the delay in his PIP assesment decision…not the letter we wanted after nearly nine months…

A couple of weeks later we had the decision through… low rate care and low mobility both of which would have been high rate if hed been assesed when he applied… but not to put a dampener on it… the backdated pay helped pull us out of a pit and has helped take the weight off of us trying to get through our driving tests… as J can no longer cycle… or walk very far… and neither can I…

So here we are in the middle of August J has had all his redundancy and is free off the company…
We are no further forward with our son’s assesments nothing has been done in the last few months… all his refferals to the social pathway, computer specialist and child mental health team have not materialised yet nor have we had the final report from the sensory pathway…

J has applied for several jobs some of which put him through to the final rounds but he heard no more after disclosing his medical history… (this makes me so angry he just wants a job any job he can do)…this has been getting him down and by way of trying to cheer him up I went in to a local new age shop and asked if they would stock prints of his work if I could convince him they wanted them… they loved them and asked me to tell him to get some to them asap… you can see his work here. So that’s one possible outlet or alternative work option.
And im still trying to keep it all together… the garden needs doing the bathroom needs decorating and im all out of spoons…

At the end of July I passed my driving test yay and J spent some of his precious redundancy getting some prints done at a fabulous printers called Monkey Puzzle Art Printers on the north coast of Cornwall, lovely supportive people who loved J work and helped me to convince him he can make money at this…

J is now in the process of setting up a blog and websites FB stuff as well as producing works he’s hoping to sell at some point…

Now for the bad news, J has had to put his job searching on hold because at the beginning of September he has to go back in to hospital to have two further big ops… The first will involve the Drs removing all of J prosthetic bone implants and prosthetic knee… Because it’s not working…They will implant a spacer and antibiotic cement to keep his lower leg attached to his upper leg for six weeks while they blast his body with an intense course of antibiotics to try to kill the MMSA bone infection he got during his first surgery… Then he will go back in and have new bone implants and prosthetic knee joint put back in… They have to be new to eradicate the infection… They need to get rid of the infection not only so J doesn’t die but also because it’s causing bone necrosis at the prosthetic join which is causing further problems with his prosthetic… He is at time of writing still cancer free so we hang on to that…

So job hustings on hold as we all hold our breath and preparing for the roller coaster ride to start all over again, this will reduce his ability 100% and we’ve just learned he no longer qualifies for ESA as my earnings and Working tax credit just scrapes over the 7,000 a yr limit… any more good news?

In the mean time we are trying to have as much family time as possible just I case 😦 and finishing the decorating and the garden as well as helping my mum decorate her hall… Sigh oh and I was diagnosed with ME as well as Fibro… If the gods are listening I’m still trying to hold it all together some help would be appreciated and I don’t need any double edged blade learning lessons about being careful what I wish for… We just wanna get through and still be a family surviving the onslaught on the poor and working classes by this government like we don’t have enough worries…

Take care everyone… Dxxx

Petition demands fibromyalgia test be fit to work.

via Petition demands fibromyalgia test be fit to work.

On Being a Burden

I guess this is a post ive been avoiding really as it’s a subject I try to avoid thinking about at all costs.

When I first became ill I was at the end of my first year of a degree in Studio Ceramics I had my future planed out.  I would make wonderful ceramics by day that would sell for lots of money and I would sing by night in the band I was in that was becoming quite well-known locally… life would be perfect…
But as often happens none of these things happened well not the way I imagined they would…

I did complete my degree through sheer bloody mindedness and with a lot of help from my partner J who had stuck with me despite my diagnosis coming only a few weeks in to our relationship…

But the price had been… becoming rapidly sicker, becoming a wheelchair user and having to give up my singing which was like a dagger to my heart a wound that has never healed… I miss it like you would breathing…

My partner J became my non medical helper at college doing all the things I couldn’t… for example he would take me to college, wedge my clay, prepair my tools, sort out library books take me down the hill to the canteen and back… you get the picture… and because I was so tired when I got home he would clean the house, cook our food, bathe me and all the usual stuff people need help with when they are so fatigued they can hardly move. Learning to cope with someone else doing almost everything for you is soul-destroying, its frustrating, lonely, and heart breaking to see someone you love give up so much of themselves and their lives knowing you can do little or nothing about it..
When you literally can not survive without the sacrifice of another’s freedoms it’s a pill that is really hard to swallow.

When I finished my degree I was almost completely dependant on J for everything but I forged forward on to do a p/t PGCE.
It was almost like I felt if I stopped trying to achieve something with my life I would stop living but after a year I started having panic attacks at just the thought of returning for my second year I literally would go white and shake at the thought of all the travel and work I needed to do… not my first experience of mental health problems but the first since becoming sick.
I took a year out which turned in to several as my panic subsided and the mother of all flair’s hit me, I could barely get out of bed and dress and often just made it to the sofa and no further… months turned in to years… after a while I began to recover from my flair slowly making my way back to some kind of balance although even this was nothing like normal but I wasnt constantly dependant just mostly… lol
During this time J got himself a job working evenings so he could be around to help me during the day. If there was an award I could give him he would be buried under the weight of them…

I decided to try college again and get the elusive PGCE two weeks in to the course I found out I was pregnant which although daunting wasnt so hard as the pregnancy hormones relived many of my fibro symptoms and I was used to being tired… my son was born at the end of my first year and was cradled in my arms while I typed with the other for most of my second year.
J was amazing looking after our son and me and working with little complaint…

When I became a qualified teacher I got a job with the local college on permitted work at last feeling like i was contributing to both my local community and to the family…all was good till ESA came along and I was found fit for work which of course im not… being able to do five hour’s a week does not make you fit to do 30… I went self-employed as I was encouraged to do by work choice everything seemed rosy till J became ill with cancer and im sorry some of this you’ve heard before but im getting to it…
Now having been off work for 9 months while getting over treatment and complications having gone back to work we are faced with quite a bit of debt not least of which debt from housing benefit cock ups… but J now faces redundancy which brings me full circle back to being a burden my total monthly income before tax credit or housing benefit is £150.00 I get low rate care DLA wich is £80 odd a month im struggling to get enough energy to work enough in my business to make it pay at all and at the moment it owes me in materials but now im faced with no income to put anything in my business its a horrible catch 22…

During all of these 18 years we have never had any careres allowance nor care support…

I have found myself wondering if fighting to work the one morning I now do and fighting to keep my business is fair to J if I was on esa id be on nearly twice what I earn now not because it’s a high paid benefit but because im to ill to work enough to earn anything…

Which then brings back the old ghosts those thoughts you try to hide you dare not admit to anyone because you think they may label you or lock you away… and the reason I try to avoid thinking about how my health effects others… the little voice that tells you, you have been a burden long enough that they would be better off without you. That if you were gone that maybe they could find peace and prosperity, if you where no longer part of that picture… that maybe just maybe its been you draining your loved ones that has held them back… it’s at times like these when your thoughts are dark and especially when you have a potential reason for them to go to really dark places…

That fighting to keep that little piece of independence feels less like inclusion and not being left to languish on benefits and more like the milestone around your neck that will drag you under…

Since writing this J was made redundant and has to have two more ops on his knee as his prostetic knee is broken and the tumour and orthopedic specialists want to kill the infection he has while they fix his knee.

In the months while waiting for his op he has been refused esa because I earn to much… lol… you couldnt make it up… so J is trying to sell his art instead and hopes to go selfemployed as soon as hes out of hospital… you can see his work at www.jonathanwilsonart.com
Dxxx

Thursday i had the dubious good fortune to be looking through twitter during and after the #WOW debate…
I came across some long and varied tweet between several campaigners and Mr S and as you might of guessed there was plenty of mud slinging. Some of which i felt was way more extreme than was necessary or healthy and probably has had lasting consequences for at least one participant. ..
Anyway what struck me apart from all the completely out of proportion accusations where several interesting views of Mr S…

Firstly Mr S is convinced all campaigners have been sending death threats to ATOS… personally I can say that I don’t think any of the campaigners I know would do that, least i would hope they wouldn’t after all despite their involvement I believe the fault lies with the DWP even if ATOS are complicent and should be held accountable. Death threatening the company and staff is counter productive to getting public opinion on our side… Most of us have been to busy helping individuals and trying to effect useful change at the DWP to engage with individuals at ATOS.

Secondly Mr S seems to think that all people who are not paraplegics or born with some form of life limiting physical or mental disability are not disabled and are therefore workshy… as someone with a hidden disability/illness who works and runs my own business  as well as having a disabled partner who also works full time in a skilled job it would seem that that assumption is on shaky ground… and this evening I was just celebrating with a friend who has had to give up a job because of her ME who has been successfully employed by another employer full time but more suited to her needs before she has had a single day unemployed… So maybe Mr S is showing his prejudice in demanding to know why we want money taken from the ‘real disabled’ (his words) to fund people he perceives as workshy when people who are chronically sick can and often are to sick to consider working in an employment market that has little understanding of their needs and no intention of employing them… and the so called mechanisms designed to help disabled people in to work to manage work and to retain work function so poorly see my previous blog about Access to Work here… But those of us who can find such employment are more than willing to do so if our health allows…
Sometimes having work and being willing to work still doesn’t always make it possible for you to actually work…

Thirdly Mr S seems to think that the WOW petition and other campaigns are about shutting disabled people away out of sight… or in one of his more colourful responses thinks we campaigners want all ‘real disabled’ people ‘gassed’ to leave more money for the ‘fakers and workshy’… this shows a deeply disturbing truth and I think fear that Mr S has… could it be his agressive defence of the welfare changes is his way of kinda wearing camouflage… hiding in plain sight from a system that is destroying disabled peoples lives… im on your side so dont attack me im a ‘real disabled’ person…

And his oppinion about us couldn’t be further from the heart of what campaigners want, in fact what we are fighting for is exactly the opposite…
We absolutely believe those that are well enough and who can and want to work should get as much support to do so as possible but thats not what the Work Capability Assessment does. It doesn’t say ok what work can you do or what work would you like to do and what do you need, how can we support you to be able to achieve that ambition… The WCA asks can you work on any or all jobs whether appropriate or available and even hypothetical jobs that may or may not exist… and it does it in a way that is hostile, unsupportive, adversarial, terrifying and damaging to both self esteem and mental well being, having a devastating effect on the claimant… There is little provision to help those found fit to actually get the work they can apparently do and no safety net if after trying work they find they cant do it or get sicker or have new disabilities develop.They just have to reapply and go through the whole nightmare again… I fully expect cases of WCA/PTSD to be recognised in the coming years…

I say all this from experience the only support is through the work related activity group which doesn’t apply if your found fit for work and even if do end up in this group the system is so badly floored you might fare better out on your own… As a Job Seeker there is the Work Choice option which i talked a little about in my previous blog… but it is far from successful and if it fails you have to start all over again…

Simply put the WCA tests for the wrong thing in the wrong way and will therefore never achieve its goal… assuming that is, that the goal is not just to cut the numbers and save money… if its about getting the disabled and those with chronic illness back in to work where possible then it has to start with the right question. Which in many ways is not a question at all but a dialog individual and tailored... what work can you do or would like to do and how can we help you do it…

My fourth observation is more worrying and yet for me the hardest as I hate criticising personal choice and believe that every individual is entitled to their opinion assuming it doesn’t hurt anyone else… but reading the comments on twitter Mr S made to several activists and campaigners I found myself deeply disturbed that Mr S thought it was appropriate for an adviser and self proclaimed voice for disabled people to speak to members of the public in this way… to accuse them of terrorism and to accuse them of murdering ‘real disabled’ people and wanting them gassed. Is deeply hurtful, I was shocked that anyone would think that of people I know who are passionate about the lives of disabled people being about choice and inclusion and I was shocked that someone who says they want the best for disabled people could be so far off track and so hurtful… I think the tweets from Mr S should be investigated by twitter by the police as he must have come very close to braking both the rules and the law…
As a disabled working person and a human being who tries to see the good in all things I was disgusted and appalled by his behaviour on Thursday and call upon the powers that be to investigate his twitter activity…
Dxxx

Hi peeps this is a post about Access to work inspired by Kaliya Franklin’s blog post

The ‘Scrounging Scum’ to ‘hard working, tax credit claiming, socially acceptable scrounging’ journey 

But it’s also a way for me to get some stuff out there so it’s not only in here anymore… *Warning* it will be long…

As most of you know I have Fibromyalgia among other things…

In 2009/10 I first realised something was going to happen to my Incapacity benefit… that I would at some point in 2010 be reassessed for something called ESA… Having a fluctuating condition, I quickly came to realise, having listened to accounts of the process my friends had gone through that it was unlikely  I would get through as I had been working on higher permitted work for three years so I started to look for alternatives.

I came up with the idea of starting my own business as a designer maker and keeping the teaching job I was doing… So I signed up for work choice that was a rocky road to say the least they where just not set up for self employment… My business has yet to make any money… sigh…

During this time I made my first application to Access to Work… to find they couldn’t help with my job because I had found it myself and hadn’t used Job Center Plus to get it so I fell at the first hurdle.

Next came the application for help with my business… I phoned Access to Work to start the ball rolling but because I was with Work Choice they wouldn’t accept my application and re directed me back to Work Choice. Work Choice said they didn’t deal with Access to Work and knew nothing about it… Fell again at the second hurdle…

In October 2011 I went P/T self employed, I had no funding and no stock so spent the winter months making work as and when I could afford materials and doing small local craft shows.

Towards the end of my first year in which I had made lots of work and had managed to go to several craft shows I decided I really needed support from Access to Work so contacted them again. This time they passed me to an adviser who asked to have details of the travel I expected to do in mileage and cost as well as time I might need a support worker and approximate cost along side any equipment needs I might have, I came off the phone thinking how am I going to work all that out… I was at a bit of a loss…

During this year my partner  J had developed a painful knee and had been in and out of hospital for tests and scans, some of them in Oxford, we live in Cornwall.

Then J was diagnosed with bone cancer (2012) a very rare one and he had to have a serious operation to remove his knee and a big chunk of his upper thigh bone and some of his shin bone and have them replaced with prosthetic metal implants the upper rod almost reaching his hip and the lower rod going half way down his shin bone… (*try to remember this description for later)

Access to Work and pretty much every thing else was forgotten at this point, though I kept my job going as I realised my two and a half hr job and my P/T business would soon be the only income we would have.

Just before his op I contacted Access to Work as I realised I was going to need help because not only would I need to keep my job but my Partner would no longer be able to care for me or my son I was going to have to do it all…

When I phoned my adviser there was a message saying he no longer worked for Access to Work and I should contact the main office… I had to start all over again… I phoned and was told an adviser would phone me back…

They never did…

After the op J came home it had been hard coping on my own with a little help from social services, while he was away but having him home was hard to as he could hardly walk and was on a lot of pain medication…We settled in to a routine when two weeks later he developed symptoms of a tummy bug… I had to fight the GP to get him to come out… My partner was rushed to hospital with pneumonia and two blood clots on his lung, he was in hospital for another week…

Christmas was just round the corner so I had to do some craft fairs as this is one of the busiest times of year and I needed to try to make some money…. Once again I considered contacting Access to work but I just didn’t have the time. J was still on Statutory Sick Pay so we where doing ok…

January  2013 came and J started to feel cold all the time we thought it was just the weather, then he lost his appetite after a few days I said you need to see the Dr, so we booked an appointment… The morning of the appointment J collapsed in the kitchen his leg had gone very red, I rushed him to the surgery and the Dr saw him straight away… she called an ambulance which we had to wait an hr for they where all busy… in that hr J went from sick to very sick and in extreme pain… when we got to the hospital they kept him in A&E for several hrs, then suddenly started rushing about giving him meds they thought he had an infection… over the space of the next ten days we nearly lost him a couple of times he was delirious with the pain because they couldn’t get it under control even with very strong meds and their was little to nothing I could do to help except be there as much as I could trying to share his pain… he had two wash outs to try to get the infection under control… they basically opened up his scar and jet washed the tissue and prosthetics to get the muck out… it didn’t work and he got sicker again… at this point they transferred him to Oxford, I knew how sick he was and how close it had come to losing him so this was really hard as I couldn’t go with him… I had to try to keep things as normal as possible for our son and try to keep my job going… He was in Oxford for a further twenty odd days and had another wash out… The bone infection specialists devised a treatment of combination antibiotics administered via pick line, which started to work and he started to recover, we managed one visit while he was there but it was very hard on us all being so far apart…

J was in hospital for just over a month, leaving me to manage on my own… just as I need to be doing my tax returns lol… it doesn’t rain less it pours…

When J came home he still had the pick line in and had nurse visits every day to administer his meds… they sent a large box of meds with him id never seen so may boxes of injections and tablets, our kitchen trolley looked like a chemist shop… he was very weak and it took a lot of time for him to recover but the med combination worked and he eventually started to pick up and they removed the pick line and put him on meds by mouth…  a combination of two antibiotics twice a day specialised ones to combat the bone infection that likes to live on prosthetic implants… He’s still taking them now a year later…

By this time it was April 2013 and J’s SSP ran out and he applied for ESA, he was very quickly sent an ESA50 (within a couple of weeks) we went through the process of gathering his info and sending it off (exhausting)… the new crafting season was beginning… I had been trying to make new work all this time but it was difficult to get as much done as I would have liked… the notion of Access to work crossed my mind again but to be honest it seemed like more work than I could handle having to do all the leg work myself just wasn’t possible…

I had also started the Stats Campaign with Jayne Linney during the last couple of months as I needed a way to channel my anger and frustration at our misfortune and the treatment of the disabled…

In July J Drs decided his knee wasn’t bending as well as it should , as he could only bend it 35 degrees… So they decided to do a Manipulation Under Anesthetic (MUA). This was done in Oxford again and was supposed to take three days… unfortunately the op went badly and his scar was torn open and his quads tendon was damaged this is the one that keep your thigh muscles in place with out it your muscles would be like a rubber band rolled up round the top of your leg… our physio is good at graphic descriptions…lol  they had to open his scar up and repair the damage… he was in hospital for another week…

When he came home he wasn’t allowed to bend it for a few weeks and had it in a full leg splint… at the end of August a year after diagnosis he was allowed to start physio and began to bend it in a bending full length splint…

In Sept 2013 over two yrs since his first problems J went back to work, still on two crutches with a full leg splint…having never heard any more from ESA, he hadn’t been placed in either group and hadn’t had a WCA… J’s work offered a sit down day job, as part of his reasonable adjustments because his job involved standing for eight hours (*remember the description of his prosthetics) and walking about but they assured him they would find him a sit down job and on days as he could no longer ride his bike to work to get to work on the evening shift. He would be allowed a graded return all of which sounded possible… The works Drs assessment stated this was how it should be done…

We contacted Access to work about his transport and mentioned he’d need a in work assessment…

J started work and was put straight back in to his old job…

On his feet for the half a shift he was doing and they supplied a chair on wheels that J found dangerous to maneuver with one leg as it was like paddling with one paddle he kept going in circles… this continued… J complained that he couldn’t do the job… his work just said your not using the chair enough and that he was his own worse enemy… all this was done on evening shift… Slowly his hr increased to full time over a month, so did his pain and swelling, preventing his knee from bending at all… In September J applied for Personal Independent Payments… here at the tail end of February we still have heard nothing from the DWP about his PIP application…

Access to work sorted paying his transport but failed to do an in work assessment…

We phoned… they said we needed to re apply… Aaagghhh… We reapplied weeks went by nothing… We where told they couldn’t contact the company to do the assessment, J told them not to bother… he had lost hope, hope that they could help and hope that the company he had worked for over ten years would let them help because they clearly didn’t care about the pain and damage they had caused him… he got really low… so did I but I couldn’t show it…

In November we went to London to visit Parliament… 🙂

January 2014 came and we learned that we had been massively over paid by Housing Benefit despite offering to give them everything they needed and giving them everything they asked for , the same week J was told he was up for redundancy, just five months after getting back to work and being tortured by his boss who happily told him one day ‘I had a bit of knee trouble once it got better”…

During this last year our son has been assessed for sensory issues and is now being assessed for Autism… his OT thinks we have to work a lot harder as parents than someone with kids that don’t have his problems. As parents of an only child we thought all kids where this difficult… bless him we are still fighting to get him the help he needs at school…three years and counting…

and then my computer died… 😦

So we have had no assessment for ESA, limited help from Access to work and no news from PIP… and plunged in to huge debt by HB…

The support system for helping the sick and disabled work… doesn’t work!

Now it’s close to a new crafting season… Do I apply for Access to Work?

I know this was long I make no apologies, some things just have to be said out loud, I never want to forget what theses past two years have been like because it drives me to fight for others.

I want to say thank you to the staff of Tralisk Hospital Truro a hospital that often gets bad press but saved my J more than once and me and our son in the past, and The staff of the Nuffield Tumor team and the Bone infection Unit for saving J from the cancer and the bone infection… with out the NHS J would not be here…

I want to thank J family and my family for all their support and help this would have been a lot tougher with out them…

To his boss and his company I want to say Agghhh you ass holes… but I doubt ill get the chance… 🙂 And just so there are no doubt about the pain they caused him ive just found this lovely pic of his prosthetics… its not the full leg which is a shame but you get the picture…

J's Prosthetics

J’s Prosthetics

There are new things a foot… the stats campaign is ongoing… I’ve started a new Fibro campaign with fibrogirl called for the moment FibroMe ForAction, and I’m working on something I think might have been over looked, I need to work on that…

Thank you for staying with me I need to go wipe away my tears there hasn’t been much time for them in the last two years and I needed to acknowledge in some way how crappy its been so I can move forward… J continues the meds and is slowly getting stronger… I’ve been in a massive flair since Christmas and quite low but I’m beginning to come back so watch out IDS I’m not done with you yet… Dxxx

PS i believe the National Service Bill gets its second reading tomorrow lets hope it dies…