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…