Category: Mental health


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

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Morning Folks,

Well, its Fibro day again where did that year go? Answers on a post card please 🙂

I wanted to have something profound and engaging to say today but to be honest I just don’t have the spoons…

I had two craft fairs to do over the weekend exhausting but fun…

And I’m also setting up a WordPress site for a new piece of action I’m involved in called #women2gether, This is a possible legal challenge to the ICC to investigate the UK government and other countries governments for the targeting women as well as others with Austerity Legislation. This is a group of women that are bringing this challenge so it’s primarily about women and how austerity measures and legislation is targeting women and causing both extreme hardship and death…

So that’s exciting and scary and a great deal of work. 🙂 spoon heavy work lol…

The other thing I’m involved in is FibroME for Action…a group that me and a Beth Greg have put together to look in to how WHO and NICE have inaccurately designated both Fibromyagia and ME and looking at ways to lobby to get a better designations for our conditions which would hopefully lead to better care and services.

There has been a great deal of research going on in the last year that is showing more and more that both Fibro and Me are complex physical neurological immune system malfunctions and that is also very exciting and hope giving… Perhaps for the first time Dr’s are seeing us, they are slowly realising that this is a serious epidemic of not neurotic 30 something women/men but a serious public health issue the proverbial canary in a coal mine something the ME community have used well to their advantage although there is still a long way to go…

Part of this action is also fighting the Psychotherapist desire to get Fibro and ME designated as mental health issues and looking at how the DSM5 will affect those who may be wrongfully diagnosed with a Mental Health problem because of the vagueness of the new Somatic illness criteria…

So as you can see there are good reasons for my not doing a long-winded pice but i hope this gives an overview of the actions I’m involved in and that you can be involved in to. I will pop up links to all the groups, blogs twitter tags that will lead you to actions you can get involved in should you wish to do so… lol tempted to say this blog will self destruct in five seconds but i think that just shows my age 🙂

Have a lovely restive Fibro day sending hugs and spoons to all… Dxxx

 

FibroMe for Action Blog… brand new so bare with… http://fibroandmeaction.wordpress.com/

FibroMe for Actions Community Facebook group… https://www.facebook.com/groups/519959614784152/

Women2gether blog… Also new … http://women2getherblog.wordpress.com/

@women2getherblog … #women2gether

 #May12BlogBomb

 

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

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…

Hi Folks its been a long time and ill do a blog post soon that explains that,

but first

A new project… Myself and fibrogirl with a group of other campaigners are going to start a campaign for the correct classification of Fibromyalgia and ME.

This was triggered by a hastily removed article yesterday that stated the FM and ME, CFS could possibly be re classified as mental health problems. This was very quickly denied by the world health organisation, but they stated there would be no change to the FM ME classification and the problem with that is, that they are not accurately classified now. So the upshot is a new campaigning group utilising some of the campaigning experience gained by working with the We Are Spartacus Campaign in the hope we can raise this issue and work towards better treatment for us all…

FibroGirl has done a blog post update which explains whats going on and how you can get involved…

Sorry ive been gone so long I will do a post soon that explains where the stats campaign is at and why ive been absent… Dxxx

Heres FibroGirls blog please read and come join us… http://but-you-dont-look-sick.blogspot.co.uk/2014/02/fibromyalgia-me-call-to-action-update.html?showComment=1392316106857

I know ive not been around since london but to be honest ive been wiped out both physically and mentally and unable to really get it together. On top of which my sons been ill just a virus but it takes its toll on sleepless nights… Anyway this piece is Written by Sue Marsh. and Cross posted in the interests of viralness.

I can hardly bear it any more. Day after day after day. Terrible stories of suffering, despair and suicide.

I’m know you don’t believe it. I know what you’re told. “It’s getting better, we’re taking action, we’re improving the process, these people don’t try hard enough, they’re not really sick enough.”

People say I shouldn’t beg. But I’m not proud. If getting down on my knees and begging you would make a difference, I’d do it gladly. I promise you now, you’ll be remembered for this. If you’re sitting at home right now, thinking about your legacy, I promise you it will be this. It will be that you turned away from the pain and suffering before your very eyes. I’ll make sure of it if it takes me 20 years.

It will be that you allowed your Department for Work and Pensions to lie and cheat and mislead whilst people – millions of people – suffered.

I know, I don’t usually click on video links either. But you found time to watch Strictly Come Dancing,you said so at the Downing St charity reception. And we know you loved Fruit Ninja. And you have time to take countless holidays.

So even if you’re convinced I’m wrong, absolutely certain I’m just a trouble making leftie, please, I’ll beg you, I’m not proud, find ten minutes – just ten minutes to watch

This film. 

Work Capability Assessments have been found in law to discriminate against people with mental health conditions. Your government appealed but the appeal was overturned. Not only are you on the wrong side of the argument, you’re on the wrong side of the law.

You have to stop this. You can pause the migration of Incapacity Benefit claimants until the process can be made safe. YOU can do it. Today if you chose to. You could stop this dreadful social crisis unravelling before our eyes.

And I’m begging you. For what it’s worth.

A few months ago Debbie was kind enough to post up a blog piece for me about my Son and his mental health issues. How difficult it was, how guilty and alone I often felt. In particular how I yearned for glimpses of my funny, loving sensitive boy.

 

Things move on as they do, I’m not sure where the turning point came or what shifted really Perhaps its was the conversation at Christmas with me saying “I’m sorry – I cant change it but I hear you and I’m sorry”

 

I no longer push and badger, my approach now is to greet him in what ever mood he greets me with. If it’s a good day we enjoy our time, sometimes I get rudeness, sometimes he cant cope it’s not like he has cast off Mental illness but I don’t yearn for the boy he was. I am accepting the man he is becoming.

 

Just recently he has begun to show signs that he may be ready to engage in life, he is a little less angry. Maybe a little less scared, he has begun to lose some weight – I wish he’d contemplate more showers though.

 

I wondered what had changed things – I try not to look beyond the I’m glad to see it too much. But today was a revelation of sorts.

 

I can barely hope but there is a little tiny part of me that has noticed a green shoot perhaps. He rang me today, I wont go into details but suffice to say he was a little embarrassed to have to talk to his mum.

 

It told me a few things slightly bittersweet, but my boy was finally growing into a man and where he would ordinarily talk to his mate or have built up experience of dating his lost years struggling with his MH have left him with an experience gap.

 

I was touched he rang me, and even more touched he wanted to do things right. Of course as parents all want our children to be ok – but perhaps when they have so obviously struggled we want it more, we take nothing for granted. I cannot of course lay any hope or expectation on the young woman he so wants to impress.

But if I had one wish, its that he might begin to build some shattered confidence, one thing might lead to another and he realises he is more than his label..

 

I remember so many of you said don’t feel guilty you did the best you can. So today’s little update is simply a thank you – I have tried to reach a place where I accept him for all he is, MH issues and all.

 

 

Today I have a guest blog post from a friend who wants to remain anonymous simply to protect those around her… This post is a harrowing account of a mother trying to help her child with mental health issues and how the system is failing both the parents and the young  kids who are trying to make sence of their lives with the added complication of mental health issues.

I’m sure I’m not alone in asking that question, especially as a parent of a teen with mental health issues, who reached crisis point at 14. Who went from a reasonably confident, happy young man on the cusp of an exciting future with a good friendship group, girlfriends and a future. To one that was ill kept, frightened, angry and irrational.

There were warning signs of course, easy when you look back, we even tried to get help 12 months before the crisis hit – to be dismissed as he will grow out of it and there is a 12 month wait for CAHMS (Child and adolescent mental health services) so we went away..

Only a parent who has witnessed their child unravel at the seams, can appreciate the powerlessness and desperation to Do Something to help them and yet Where to turn?

I wont bore you with the details of abuse, physical violence, threats, door slamming as they once again leave to god knows where and will they return or will this be the time the police come to tell you your child have been, arrested, killed, admitted to A&E.

The constant tension of do I push and insist on rules and boundaries or accept they are ill and not just an angry teen…the people telling you it’s just attention seeking behaviours and the self harm is deliberate to prove a point, or the time he forced me out of his room so angry he punched a door and once again we had to go to A&E – those conflicted feelings… But

Where To Turn?

The sleepless night, the fear and worry impacting your own health, a sense of powerlessness, locked in a battle to get him help, to fight with school as he refuses to attend… No one ever did explain how you get a 6-foot; well-built angry teen to school…I’d like to see a welfare officer try.  But Where to Turn?

School?

Many promises, all broken, he was dismissed as a drug user who was just being difficult and didn’t want to try – a member of the awkward club, intelligent but unwilling was never in trouble so down the list… Out of sight out of mind

GPs?

Endless visits, endless brush offs he’s too young to be depressed, it’s a long wait for CAHMS, he isn’t really that bad just try to go out more, sleep better, get a routine…

Where to turn?

Then crisis hit the dreaded phone call – that even as I write this brings a lump to my throat… A friend had found him walking along the street… Virtually catatonic… Then finally a small breakthrough a GP who was actually listening and acted.

She got on the phone thinking it would be an easy referral – boy was she wrong after an hour of the run around she sent us home. Each bit of the system said oh we can’t see him not for weeks and weeks, lists are full, not our type of kid… In effect not our problem.

But she didn’t give in, round and round and eventually she got an emergency appointment in 48 hours… Unheard of but we were grateful. Well I was don’t think teen cared…

We entered the world of CAHMS – nice enough all lovely pleasantry but an angry mentally ill teen who didn’t want to be there, didn’t want to engage in fact didn’t really want to be anywhere… Was never going to be easy. I tried, I begged, I cried and he played with Lego!!

Well that’s not strictly true – at first he tried, was relieved to be heard and listened too we both thought we had got the help he needed. He was prescribed Prozac…  hmmm lets just say the aggressive angry teen become ever more so.

In Yr 10 he struggled on – was not there more than he was… By Easter he pretty much left and never went back. Yr 11 beckoned – he lasted till week 2, when he walked out never to return – school did not honour its promise – as far as they were concerned a room on his own with all the work he’d missed and no support was enough!!!

I cannot truly put into words the fear, isolation and horror of being left alone to cope – no real help, no strategies, no support for me just an ever-increasing crisis… But you see now under Cameron’s “trouble families criteria” we would be one – none school attendance, benefit reliance, council flat, mother with a disability – except we never got on anyone list or radar…

Just left to muddle along, our attendance at CAHMS was erratic, sometimes his dad would go, and sometimes he would go alone sometime he didn’t… School desperately tried to bamboozle me into home educating him… I clung on to one thing… NO I wouldn’t… He was ill they had to offer more… Finally in year 11, 6 weeks before his exams he got a home tutor… With help from his psych nurse – we prevailed the one tiny bright spot in our life at that point.

He had done some GCSE work intermittently in yr 10 on the rare occasions he went – he’s bright my lad and I worked hard to get him to agree to a tutor – His dad helped a bit, but mostly I was left alone to get on with it… Maybe I didn’t ask enough I don’t know but when you’re in the eye of the storm you kind of hope someone will take over and of course they never do…

those 6 weeks were a marvel his tutors were great he worked hard – do the bits of course work he needed and combined with just enough work from Yr 10 and a couple of exams he made the deadline…

That summer day _ I can still remember it clear as a bell he smiling beaming face 2 GCSE’s Maths and English grade C – he was euphoric my lovely, funny bright lad was there for just a moment…

Gosh my eyes are full of tears – perhaps only a parent of a teenager lost to you could understand the feelings when the child so dear to you and yet so lost shows a glimpse that they are still there somewhere…It gives you hope

I wasn’t foolish enough to know he was better, but he maybe had turned a corner… Or had he?

In truth yes and no – we have never returned to the horror times and he has never again threatened me… Perhaps the conversation where I kicked him out and sent to his dads about just how men become abusers of women… Who use violence and the threat of it to get their own way… Not a pleasant conversation to have with a 15 yr old…

He went to college, got through the yr just… Got in with yet another crowd who abused his desperation to fit in… Imagine if you can the utter despair of your 16 yrs old celebrating his birthday with 1 person who had remained… And not one other person came – I cannot begin to describe how much I wanted to pick him up and protect him from that pain…

I made mistakes god did I, my own fear and pain permeated our life… Just as much as his… But I tried I never once walked away… I took every bit of shit he threw at me… Cause after all who else would?

I’m no saint – far from it but I loved him then as I do now…

Forward wind 3 years… Its rough still and he is still a shadow of the 14-year old with such promise – he no longer lives at home, and our rocky relationship hanging by a thread is growing stronger…

He has little help, lives on ESA and is not shy in telling me how bad a parent I was how I let him down, how angry he was with me and by the time I did something at 14 it was too late what could I say but I’m sorry…

I don’t know how to end this blog post… The one none of you will, ever read… Other than why do we allow families to reach crisis point before anything is done?

why are you left alone to struggle on and no one helps – no one steps in and I’m just 1 mother with a son who flew off the rails, who lost his way and in the process almost lost himself…

I don’t know what the future holds for him – but we were never a problem family we just had problems… Mental illness can strike at anytime but for teenagers and their families the brick wall and impenetrable maze is soul destroying…

If I could change it I would

1. Have a pediatric psych on call in A&E not leave people to have to make an appointment and do it themselves with no support

2. Have rules around mental health for teenager so case conferences are triggered and early intervention happens to prevent a crisis

3. Have inpatient space for teenagers at risk who may not be acute but are close to it where time out and space to be assessed might prevent a total melt down

4. Offer help, support time out for parents and carers – give them advice and help not just leave them to cope cause you know what we don’t.

5. Have a fundamental review of CAHMS and mental health services in this country but not just from a professional’s perspective – from young people themselves they know what they need listen to them.

But above all I wish no other family has to go through what we did… Sometimes I allow myself an If Only moment… What could I have done differently? But more important what could someone else have done to help us when we most needed… Would he now be healthy and well enough to go to be in Uni or creating amazing art work or websites… I will never know. Because we only have now and somewhere out there is another parent facing the same thing…

It seems that the sick are to be subjected to more conditionality to receive sickness benefit.

The government plan to announce a new 25 million  trial scheme (could they not think of better things to spend that much on?), possibly targeting alcohol and drug addicts. The scheme will force those on sickness benefit to accept treatment or loose their benefit, in a similar way as Job Seekers Allowance conditionality does. It seems a reasonable idea on the surface, but if it gets rolled out country and condition wide where will it stop…

When do you draw the line between refusal of treatment and treatment choice? For example many thousands choose to treat their health with diet or homeopathic medicine, will that be acceptable?

What will happen if you disagree with the diagnosis? Will you have to endure treatment for an illness you dont believe you have in order to get you benefit?

The crux of the matter for me is the freedom to choose, as a person with Fibromyalgia and CFS, I am very anti the idea that my health is caused by my emotional state… (CBT) which by the way is wrathful at the moment… I am not an emotional wreck… in fact I’m pretty stable for a woman who’s partner has recently been diagnosed with cancer… but that’s another story…

I object to the notion that, this government thinks, medical choices for long term addiction and illness is all about the patients refusal of treatment. In thousands if not millions of cases the lack of treatment of a medical condition is about lack of resources, resources continually cut by the very same government. Compounded often by neglectful policy handed down by the government that leads to lack of treatment. For example Fibro is not to be treated by Physio because it cant cure it, no it cant but the physio or body work as its termed in the USA is very effective at limiting the effects of Fibro and making it less debilitating.

Addictions are as much about mental health as they are about the chemicals and damage to the system, so are they going to re fund a sector of our heath service, that they so recently stripped so effectively, Mental Health provision is on the verge of collapse, will they refund it so it can cope with an influx of clients seeking help to conform to their health benefit conditionality? I very much doubt it! They will hire a subsidiary of UNUM the USA’s second most disparaged heath care company or ATOS also equally disparaged, to asses people as well… job done…

Additionally as the NHS get overwhelmed with millions queuing up to full fill their conditionality, the government will have another example of why a privatised health service will be beneficial… not…

Personally I hope this comes back to bite them, I hope all the MS sufferers and Cancer sufferer’s that are being refused drugs because of cost, sue this government for not allowing them to meet their health benefit conditionality by refusing treatment based on COST…

SO SAY WE ALL… Dxxx