Tag Archive: Carers


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

Advertisements

Hi folks, well that time out really was a time out… lol  The last part of our story was in Jan 2015 and it’s now July 2017, and what a long road we have been on…

At the end of the last our story post, J’s surgery had been cancelled, the Drs decided to stop his antibiotics and  he’d decided to get on with his life and despite several setbacks he was on the first of many tiny steps towards a new direction for work an career.

During this period we managed to get a referral to the Autistic Spectrum Disorder team for our son for an assesment, we where on the waiting list, but it was going to take approximately 18months before we could see them… oh the joy… 

Strangely and by seeming coincidence, the course J needed to do, in preparation for the PGCE and working as a teacher the PTTLS course, was going to cost £600 and seemed to be beyond us, when J’s dad happens to mention that a local group he had heard of (he spent most of his working life as a youth worker) was doing a PTTLS like course and that he would enquire aboout it… a couple of days later he contacted us with the info and said ring up, I think it’s free… Wow what a score, J phoned and booked on the course, it was a six week crash course and it was free… woohoo… and that wasn’t the strange bit, the course was being held in the business park literally over the road from us or behind the houses over the road from us, a very short ten minute walk from our front door, how awesome was that…   lol… 

J through himself in to the course battling some significant anxiety, he had been away from the work/education environment for a long time, but despite this he completed the course with flying colours… very proud 😊

At this point J started volenteering for the college and started accompanying me to work as my teaching assistant learning about how we do all the paperwork involved in teaching and the hands on teaching process. Experiencing the ins and outs of teaching people with mental health and disability issues. All in preparation for college in September  2015…yes he was offered a place on the PGCE part time, I became a fan of this moving forward thing, so much so I applied to do the TDL level 5 myself, (Teaching Disabled Learners) as well as taking on more hours… (in retrospect not the most sensible idea..)

Summer hols some time to prepair for all the stuff we had signed up to do yikes… and a chance to go camping for a long weekend… hello Beth… lol… worst weather ever, 50 mile an hour winds and torrential rain… but we survived and had a great time. Even though it nearly killed us both, note to self theres nothing wrong with clean sheets and room service… 

September came and J started his course, he was alocated a mentor and placement, teaching horticulture to students with learning difficulties and some PMLD students. These where students with profound and muliple learning disabilitys, the problems J students had ranged from Autism and Down’s syndrome, to students that couldn’t walk, talk, read or write. He also continued to work in my class teaching students with depression and anxiety as well as some other mental health problems such as schizophrenia, bipolar disorder, borderline personality disorder, multiple personality disorder and autism. So quite a selection of different learners and different experiences.

J coped really well, surprising everyone including himself at how quickly he settled in to teaching, seeming to find teaching even the most challenging students with professionalism and compassion as natural to him as painting has been for years, did I ever mention J’s an artist? He even took on a commission to do a painting of a friends home, this moving on thing was really out of control… (the run away train when down the track and she blew….) lol…

We both settled in to student and teachers lives spending most of every day doing paperwork…I’m not kidding!

January 16 came and I was asked to take over a ceramics class, yay teaching my specialism what more could I ask and the extra money was a god send as we where struggling because of the 365day rule… in February J started to complain his leg hurt, just aching and we put I down to working to much, a week or two later he went to the GP as his pain was getting quite bad, the GP said nope nothing wrong just rest more and take some pain relief, luckily it was almost Easter so we didn’t think much of it.

Just before Easter I was asked to cover another class because the teacher was off ill, I had been doing some cover work over the last few months just the odd extra class here and there so I was used to dropping in to a class, this was a horticulture and art class and was a whole day, now I was beginning to realise that wanting to do something and actually doing it where very far from the same thing… but money needs sometimes over rule our better judgement. I was doing well on my TDL, working as much as I dare and trying to make up for the lack of income that was by no means J’s fault.

Easter came and J’s leg wasn’t improving if anything it was worse, the same GP still insisted nothing was going on, no infection he said just rest… this was the same GP that had missed J’s infection before so we where not convinced and started to watch J’s symptoms more closely…

The Easter holls finished and we both started the final push J was working towards the end of his first year and I was working towards my final essay and resuch project as well as working. By this time it was mid may and J suddenly had a pain attack when I wasn’t home. When he couldn’t reach me he got our son to phone grandad and he called an ambulance, Jon was in agony easily as bad as some of his early pain back in 2012-13 when he had the bone infection. With his history the paramedics decided to take him in and he spent an over night stay in our local hospital in lots of pain. They sent him home the next day, they couldn’t find anything wrong.

J tried to carry on going in to class and doing his resurch project on comunicating with PMLD students that couldn’t speak or write, a fascinating and frutefull piece of work that shows promise for improving communication between staff and students.

Finally after nearly 18 months of waiting our son had his assessment for Autism but it would be some time before we would get the results.

A couple of weeks later J was rushed in to hospital again in agony, this time he was there for ten days while they tried to get his pain under control. This time they told him you have an infection but we can’t find it, we can’t pinpoint where it is but we know you have it. By this time J had a small red patch on his leg just above his knee, things where not looking good. The Drs finally discharged him because he had an appointment to see his specialist in oxford the following week. That appointment got cancelled and J muddled through another couple of weeks of college.

He finally got to see his specialist at the beginning of June and as we suspected they confirmed his bone infection was back with avengance and they had no choice now they would have to operate and do the op they had cancelled in 2015.

To be continued… Dxxx

Black Fire

How do you pick up the pieces
When they are shattered beyond repair
How do you hold it together
When no part of our life is still fair

Hope feels like a milestone around us
Dragging you right through the mire
Fear is a pain like a needle
Piercing and bringing the tears

And all we can see is the Black Fire
Insidiously bringing its friends
And all we can do is move forward
Hoping against hope till the end

And sorrow is a place where we live now
Sorrow for all that’s been lost
And all we can see is the Black Fire
Every day lived in desperate fear

And where is the help and the hindrance
Where is the path we can tread
Now we follow on a road so unspoken
And we start all our days filled with dread

And all I can see is the Black Fire
Bringing us down to our knees
And all I can see is the Black Fire
The Black Fire between you and me…

Dxxx

Dedicated to all partners and carers, friends of those with cancer…

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

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