Sarahs story #spartacusreport #spartacusstories

MY SPARTACUS STORY (abridged)

I am writing this now because I have a physical disability and am relying on DLA and soon probably other benefits too as I face the loss of my job. I did however, have experience of the welfare system as a young adult, and so have included my earlier experience of mental health problems. If you wish to skip that part and go directly to my current circumstances, and fears, then go straight to paragraph 6.

As a teenager I suffered from mental health problems. I began self-harming at the age of 11 and by the age of 13 teachers, and subsequently parents, found out. I was seen as an outpatient and given Prozac; this gave me terrible panic attacks. I was admitted to an adolescent psychiatric ward in January 1997 for 2months, where I was put on seroxat, no panic attacks, but first ever suicide attempt followed soon after. I returned to school, but the ridiculing at the hands of others at my difference and unusual absence was too much to bear and I took an overdose not long after being back. Not to mention, the school had not let me be part of normal lessons contrary to what they had promised the hospital at the discharge meeting. After this overdose I was unofficially expelled, just wiped off their records and asked never to step foot on the premises again. The year book produced just under 2years later lists ‘those who left us early’ and includes those expelled for drug dealing, bulling and other atrocities, but none so serious as mental health issues, for which I was inexplicably deleted from the memory of the school.
In October of that year, now 14years old, I was readmitted to the same hospital for a 2week assessment. This two weeks became a year in total. In the February I was detained under the Mental Health Act on a Section3 (6months) due to repeated attempts to take my life. The next October, 1998, I was transferred to a secure unit, where it became apparent that this could easily be my life for the next few years unless I did something about it. I appealed against my section, and won, much to the dismay of the consultant who had said “You definitely won’t get off at this one or the next one, you could win an appeal at the one after that, but I wouldn’t support it” – they were 1year sections by that point too. So he had his idea of my life bagged up, secured up even, having met me for probably less than 3hours in total, for the next 3years. I was still very ill, but not as ill as those who sat alongside me in the smoking room. I had a supportive family, and a place to be looked after by loving parents, which is more than most the other patients had.

I left the secure unit in May 1998, moved back in with my parents, and attended a therapeutic community day centre. After 6months, I moved in to a supported living hostel. Despite all the love and support my parents gave me, I had become institutionalised and used to the structure provided by anonymous staff rather than loving parents. I also wanted to live in the town and not have to do the the 2hours bus journey every day to get to the day centre from my parents village. Hear began my journey with the welfare system. I put in a claim for income support, as I was still attending the therapeutic community daily for 6hours, and so there was no way I could work. As soon as I moved in to the hostel, I put in an application to the council for accommodation as there was a 3year time limit on staying at the hostel so it was standard procedure to apply as soon as you moved in. Due to my mental health history, they put me in a high medical needs band and I got a flat of ‘my own’ within a few short months. By August 2000, a couple of months after turning 18, I had moved out and in to totally independent living. I had expected to be staying in the supported living hostel for at least 2years, so it was a bit of a shock. I was still attending the therapeutic community daily, still self-harming, still suicidal, battling an eating disorder, but doing everything I could to get better and stay out of hospital. I was receiving DLA by this point, it was, if I recall correctly, set at £200 a month & helped me in my move to independence. In Sept 2001 I got a boyfriend, he wanted to move in and as he was working, he couldn’t do this legally with me claiming benefits. So after a while, I ditched everything and got a full time job, at a nursing centre. Having not particularly worked before save for the odd pub shift, I called up the benefits office, proudly declaring my intentions to work and that I no longer needed their help. I lasted 3weeks in the job before meltdown. I went crawling back to the benefits office, admitting defeat, asking for help again but because my boyfriend was living with me, his earnings, of about £10,000  a year, were considered enough for us both to live on. He paid all the bills, rent etc. I lived on my DLA, trying to get over the humiliation and set back I had put myself through of going in to work and failing after such a short time. After a few months, I applied for a part time job, just 2 days a week, I did this for a few months before the job became full time. I was by no means ‘well’ at this point, there were still many incidents of self-harm which remained secret from loved ones and employer alike. Such was my determination to work and be part of what is considered normal and accepted in society, that I managed to carry. Sometime during this period, my DLA was turned down at renewal, I forget why but it was, and that was the end of my journey with the benefit system for some time.

In 2003 I applied for a job working for a large public sector organisation and was lucky enough, somehow, to be successful. During my time working there, my mental health has been far from perfect. Up until 2005, I was still having weekly therapy sessions with my key worker from the day centre. In 2005, this service was shut down due to budget cuts at the Primary Care Trust. A particularly serious attempt on my life followed, leaving me in a coma for several days with the doctors unsure if I would wake up (I had two weeks off work in total).  After that, I could no longer cope with the job I was doing (having been made redundant due to centralisation from the first one) and I put in another claim for DLA, this was awarded for 1year.

Due to being awarded DLA, I could apply for a part time job that came up in a department I had always wanted to work in, it kept me in work and off full benefits, I was still paying all my rent, still paying tax and national insurance, and still had the dignity of being in work. During that year, I really took time for myself, I saw a brilliant psychiatrist who put me on new medications being very forward thinking that he was. Most psychiatrists in adult services see you ever 6months and prescribe medication, but no therapy would be involved. I was lucky enough to get this lovely doctor on his 1year rotation, his special interest by my diagnosis.

Being part time at work meant I could start new medications on the days I wasn’t at work. Take one day a week to have therapy. One of the medications had to be increased every two weeks due to the risk of a fatal rash developing if it was increased too fast. Every time I increased it, I became suicidal, I knew it was down to the medication but it didn’t make it feel any less real at the time. I could time all this to not miss work, and to stay in my part time job, having DLA enabled me to do that. After a year of working and having time to finally stabilise things whilst being largely ‘out of the mental health system’, I was ready to go full time and a position came up so I didn’t attempt to renew the DLA, not feeling I needed it anymore, and along things plodded, in stability and relative happiness. I got a boyfriend (the last relationship ended in 2005) and we were so happy, and in love (and still are). Then there was the fateful summer of 2010.

I woke up on July 9th 2010, one of the hottest days of that year so far. I got out of bed and the room was spinning, I felt like I’d had about 8pints of cider. I stumbled about, exclaiming to my boyfriend as I staggered about how odd this feeling was. I put it down to the heat, but feeling rather weak, got on a bus instead of cycle, and got the train to London for a hen do. I stayed sober throughout, not drinking much at all, no longer dizzy, but slightly not right still the same. I stayed at my friend’s house in London, waking up to the phenomenon that is double vision, or diplopia as it became on my medical notes, along with the room spinney dizziness that had returned. I kept rubbing my eyes, blinking, assuming this would go away, that I just hadn’t woken up properly yet. I walked about and waited, still no improvement, laid back down, my two friends still fast asleep. Skip forward a few days, couple of GP appointments, and a diagnosis of labyrinthitis, I was told by a GP I needed to get to A&E, I was rather shocked at this suggestion, A&E for an ear infection, surely not?! Anyhow, I managed to get a lift to the hospital and waited together with my boyfriend for hours in the waiting room. Eventually, they started mentioning brain scans, and I started getting scared. All this time, however, I didn’t believe myself. All the years of having mental illness, physical illness was always blamed on stress, or something I’ve done to myself, I didn’t believe there could be anything really wrong with me. It must be all in my head I thought. They did a CT scan, which came back clear, and stuck me on a ward by about 4am, about 15hours since I’d got there. The next days are all a bit of a blur, but the included the starting of going numb down my left side, getting woken by severe stabbing pains in between my shoulder blades, losing  the ability to walk. I had a brain MRI which showed lesions, patches of demyelination. I had no idea what this was, but was told it was a one off, probably as a result of a gastric bug I had picked up when I visited a friend in Ukraine a month before. After a week, I was discharged, using two crutches for short distances and a wheelchair for anything more, which was unavailable on the NHS so I went to the Red Cross who loan them out on a temporary basis. Over the coming weeks, my walking gradually improved, the feeling slowly returned and the pain in the shoulders eased. My walking however did not improve completely, the sensation did not return to normal sensation and the pain did not completely disappear. In September, I returned to my job on reduced hours, where I continued to try and build them up to get back to full time. By early November, I could walk probably over a mile, I was back on my bike, I was going great guns. Still getting tired, still not back to ‘normal’ but so much better. Then suddenly one day, I just couldn’t. I had no idea why, nothing I could put my finger on as such, I just couldn’t walk as far and could no longer balance on the bike. I had a follow up scan and a neurologist appointment on 20th December, where they confirmed that I had new lesions (oh so that’s what the suddenly being able to do less was) and gave me the diagnosis of Relapse Remitting Multiple Sclerosis, and gave me some steroids for the relapse.

In February 2011, I had another relapse, more steroids. Still not over the first two, but was told that it can take up to 6months for the healing to fully occur, but that after 6months any symptoms are permanent. So that pain between my shoulders that stops me sitting on certain chairs, sitting for too long? Yes, permanent. That seeing double on looking to the left? Yes, permanent. That weird sensation down my left torso where I can’t tell if something is hot or cold and it feels like I’ve been slathered in tiger balm? Yes, permanent. Getting so tired I can’t do anything? Yes, permanent. I was still not able to work full time, and considering my job was meant to be covering a shift pattern and because of budget cuts the office was already running at 25% less than it should be, I was worried I was going to lose my job as it became apparent I wasn’t going to be relieved of the symptoms that were stopping me being there, working full time and working shifts. I was there, but not in my full capacity. I got in touch with a disability charity, who helped me put in a claim for DLA which I was awarded for two years, until February 2013.

After another bout of steroids, and all the fun this brings -side effects include sleeplessness, constipation, bitter taste, feeling like you have a second skin, frequent urination. The side effects are okay though, it’s the withdrawal symptoms where you feel like every joint is sprained, can’t walk, can’t use crutches, just have to stay in bed for 2days until it passes. I started daily injections of Disease Modifying Drugs (DMDs), to try and slow the progression of the M.S. I got horrible site reactions, each one swelling up to the size of the biggest mosquito bites I’ve ever had, itchy like crazy and hard lumps, some of which still remain. The site reactions however, feel like nothing to deal with compared to the possibilities of the alternatives. Basically with DMDs for M.S, you initially have two choices, the Interferon’s or Copaxone. I was directed to the M.S decisions website by the M.S nurse, and my decision was based mainly on what I read on there, and other reputable online sources. Interferon’s, although generally don’t give site reactions, have the common side effect of having flu like symptoms for 24-48hours after injecting. Depending on which interferon you go for, this is anything from one to three times a week. Interferon’s are also not recommended for people with a  history of depression. I was, and still am, trying to desperately cling on to my job, so for the stability that Copaxone felt it could provide by comparison, I decided that daily injections and site reactions were much easier to deal with than flu symptoms and depression.

So on 1st March 2011, I began Copaxone, full of hope that it would stave off what appeared to be rather regular relapses. In July 2011, another relapse hit, I also got very depressed. Was it a symptom of the relapse, or a natural response to dealing with having been diagnosed with a degenerative illness? Who knows, not me, but it was what it was. I stayed at work, but just felt so bleak. In the September, I had a routine appointment with the MS nurse, who wanted me to see the neurologist as things still hadn’t improved, I informed him of some of my newer, more embarrassing symptoms (let’s just say there were of the bowel) and he confirmed it was a relapse and gave more steroids. Too early to consider Copaxone a treatment failure for him, and too early for me to give up on it given the alternatives, we carried on with it. I have expressed my fears of going on to an interferon to the neurologist and to the MS nurse, that I would lose my job if I had to have more time off to get used to it, and also my fears with depression. The flippant response has always been “oh well, we’d just treat that”. They have no idea that it is not that easy. They say they would monitor me, would they? Of course not. Unless, by monitor, they mean carry on with the 3monthly appointments that I have now, and leave it up to me to call if I feel depressed and if I do refer me to the GP for some jolly old Prozac. Little do they know, I can’t take Prozac, seroxat, citalopram, sertraline, venlafaxine, lofepramine, amitriptyline or anything other tricyclic or SSRI. The only anti-depressant I’ve ever responded to is moclobemide, one of the newer MAOI’s, with which, one can’t take any cold & flu remedies, which if was to be on a drug which makes me feel I have flu 3times a week, ain’t gonna be much fun and ain’t gonna make for staying in a job for very long. All of that aside, the flu, the depression, I could probably cope with if it wasn’t for the fear of losing the job. I could also maybe cope with the depression, if I had some kind of back up or offer of help from the mental health services. Remember those budget cuts I mentioned from 2005? The ripples are still being well and truly felt. After the bout of depression in summer 2011 I asked my GP if there was any chance of getting some Cognitive Behavioural Therapy, as I had responded well to a short course of that as a young teen, and it is recommended for dealing with M.S. She referred me for an assessment, which came up a blank. There is no mental health support for someone who has a history of mental illness and is newly diagnosed with a degenerative illness. I can cope with this, but understand it does make me somewhat nervous to try a drug, or new situations, that might push me to the point of not being able to cope.

Oh, yes, this is probably the point where I should explain a bit about the job situation. After all that timing of the drugs, choosing the DMD partly based on work, taking steroids so the withdrawal symptoms are at the weekend, I am losing my job anyway, due to the centralisation of the office yet again. As well as centralising, meaning a commute that I couldn’t manage, the job itself is changing, meaning shifts I couldn’t manage. Even if I could get there, the setup of the new office will be such that it would be too much back ground noise for my poor concentration levels to cope with. The job itself requires too much cognitive function which I feel I have lost. So my only option is to ask for medical retirement, or redundancy. Obviously redundancy would be a one off payment that might see me through 2months, 3 at a push, and then I’d be stuck. So medical retirement and a pay-out of the pension I’ve been paying in to for the last 8.5 years, seems like the best option, to keep the metaphorical welfare wolf from the door as much as possible.
Once I found all this out, and it became apparent I was losing the only job I’ve ever felt safe working in, ever enjoyed, the environment I’ve known for the majority of my adult life, I was rather stressed, and as much as I tried not to be, I was. Thus, making symptoms worse. This, coupled with the death of a family friend (who sadly lost his battle with his own M.S journey), meant my being signed off for a month over Christmas. I was due to return this Monday, today, but sadly, after toiling away online last Tuesday, reading about the Spartacus report, and trying to do my bit, I’ve had another relapse and am on another course of steroids. This relapse bought fatigue like I’ve never experienced before (able to be awake for about 5hours a day if I did nothing), both legs buckling when I walk, head spinning, nausea.

I am gutted I can’t go back to work; I want to go back not just fade out. The office is moving at the end of April, so I have to be gone by then anyway. I am filled with fear as to what I will do.
It seems the Copaxone is not working, so I need to consider interferon (Oh, did I mention, after interferon’s is another option a monthly infusion, which has the lovely side effect of sudden death), but if I take that, am I going to be able to hold down another job? Is a new employer, if I’m lucky enough to find one willing to take me on,   really going to tolerate the level of sickness that taking an interferon could bring?  So do I push for this change now, & try and be stable by the time I need a new job? Or do I not take the risk of depression in an already stressful time, and ask to jump straight to the one with sudden death as a risk?

At the moment, I am still lucky enough to be being paid full time, however obviously when I lose this job, I will look for a part time job, as I just can’t manage full time. I can’t work enough to support myself, living in the cheapest accommodation I can, a one bed council flat. I am not in a mansion, I am not asking for the world. I am asking to be able to manage my life in the best way I can, taking as little from the state as I can in the process. DLA enables me to do this, without it, I'd be out of work altogether, thus claiming housing benefit, council tax benefit, employment support allowance, not paying income tax and not paying national insurance. Aside from all that nonsensical ridiculousness of it all, I don’t want to be sat around the house all day, my GP doesn’t want me to be sat around the house all day, and this will do no good for my physical or mental health. I NEED DLA to be able to work, to be able to pay income tax, national insurance, council tax and rent. I NEED DLA to have my dignity, health and happiness. I could go in to the ins and outs of what else DLA pays for, but I think that you should be able to imagine that now, with the rather lengthy history I have provided, and after all this isn’t a DLA application, it is a piece of writing from the heart. Needless to say there are many other ways in which DLA helps me, but what can make more sense than being able to stay in work, costing the state less and making a contribution?

I am so scared for my future. To summarise the fears I feel I face are, losing my job in April this year, hopefully getting medical retirement, but this is a whole battle I have still to face. Once I am gone from this job, I will look for part time work; I may or may not find an employer willing to take on a disabled person with an erratic and unpredictable illness. If I am lucky enough to find a new job and get settled, I then have the DLA renewal to face early next year. With PIP being introduced in April 2013, I really can’t imagine a DLA renewal being awarded 2 months before. If this is turned down, how do I live? I will have to quit the job I might have just started settling in to. And when do I fit in the change of medication to all this? The change of medication that isn’t to manage day to day symptoms, but something that needs to be done to try and slow down the progression of this beast that is M.S. Every month this is put off, is potentially a month taken from my future. I am scared, I am scared of M.S, scared of not knowing how long my body will hold out, scared of not knowing with each relapse what symptoms will remain with me forever, scared of depression, scared of feeling suicidal, scared of dying at my own hands, scared of dying of M.S, scared of how this is affecting my loved ones. However more than all of those fears, I am scared of David Cameron and his Welfare Reform Bill and the ability that one small group of people with no experience of life on the bread line, has to make all the things I, and millions of other disabled people and their carers, have to face anyway, so much harder.

None of these things in my life can be helped, they are the hand I was dealt and I don’t proportion any blame or expect special treatment or sympathy because of it.  But I do expect to be able to LIVE, ideally, with some dignity, although in the current climate maybe dignity is just too much to ask, but living? Surely not.