When I first rekindled my relationship with my partner, serving an indeterminate sentence, he was almost over tariff and we both thought that it was just our first Christmas that we would miss out on being together for. Instead this Christmas will be our third one spent apart, and he’s been in prison even longer.
I’m not the only one who feels that something is missing each year because of a loved one in prison. In fact, the problem is far more widespread than many of us are aware of, mainly because so few people feel comfortable disclosing their situation.
I also had reservations about sharing, scared of being judged or making things difficult for my partner (which is why I’m keeping him anonymous throughout this blog).
A Mirror article (December 13th 2014) by Keir Mudie: http://www.mirror.co.uk/news/uk-news/christmas-heartache-200000-children-facing-4806674 highlights how there are more than 200,000 children with a parent in prison this Christmas. This heartbreaking statistic is grim reality to those of us who visit a loved one in prison. It is easy to spot the children who will be missing a parent this Christmas day, some of whom will have never spent a Christmas day with their parent.
Many of these children are being brought up by loving family members such as the remaining parent or a grandparent etc, but the Prison Reform Trust:
says that :
‘Fewer than 1% of all children in England are in
care, but looked after children make up 30% of
boys and 44% of girls in custody.’
Around the time of writing, an interview on BBC radio 1 is being broadcast interviewing a young person who is describing the issues she has faced since her stepdad was sent to prison:
You can catch up on the broadcast, as I will be, here: http://www.bbc.co.uk/programmes/b006wkry
A Prison Fellowship project known as Angel Tree attempts to enable imprisoned parents to continue to be a felt presence for their children on Christmas morning. The organisation enables parents in prison to send their children a present at Christmas http://www.prisonfellowship.org.uk/what-we-do/angel-tree/ . I was pleased to be involved in a small way this year and it is a project that means so much to the many people affected when someone goes to prison.
The statistic about the number of children with a parent in prison is just the tip of the iceberg and is just the beginning of raising awareness of the number of people with an empty place at the table this Christmas day. The prison reform trust puts a 2013 figure on the number of people in prison as:
‘On 10 May 2013, the prison population in England
and Wales was 83,151.1 Between June 1993 and
June 2012 the prison population in England and
Wales increased by 41,800 prisoners to over 86,000.’
If each prisoner has at least one loved one, 83,151 people are thinking about them. The knock-on effect of this is huge and the likelihood is that the impact is actually far greater than this.
It doesn’t help to know that often the Christmases spent in prison are pretty dismal:
The article I link to above talks about Christmas spent on the inside. While the Guardian article I link to below describes Christmas on the outside for those left behind as well as how it feels for prisoners themselves to be separated from their loved ones:
Many would argue that the point of prison is to punish people for the crimes they have committed, to teach them a lesson. Some may even think that it is our own fault for choosing to stick by a loved one in prison. The truth is, when you love someone it is incredibly hard to walk away. For someone who has a parent in prison it is even harder too. So this year consider the hidden heartache for those who have a loved one in prison and remember that whether or not you sympathise with the prisoners, the only crime that has been committed by the ones on the outside is loving someone who can’t be with them.
What follows is another post I wrote whilst staying on a psychiatric ward for most of November. I apologise for the delay in posting but with a combination of internet problems and not being in a good place, I’ve struggled to keep this blog up-to-date. My last 2 posts https://brokenglassshimmers.wordpress.com/2014/11/15/off-the-radar/ and https://brokenglassshimmers.wordpress.com/?p=808&preview=true&preview_id=808 will help to fill you in on some of the background.
How I manage a crisis can be seen in both a positive and negative light, especially at the moment as I write this post from my room in a psychiatric ward.
Many would assume that being here is a sign that I’ve failed to cope in the ‘real world’. I couldn’t cope with the obstacles that littered my path. I became desperate for a way out, however final.
Many people see weakness because I couldn’t handle an ‘ordinary’ life. They think that I should toughen up, pull myself together and remember that there are others far worse off than me. If only recovery was as simple as that.
Anyway, how I have managed this crisis hasn’t been completely negative. I stubbornly refused to give up reaching out for help and I’ve generally been very honest and open about the difficulties that I face. As a result I’m in the safest place that I can be right now. I’m learning from staff and other patients and more likely to get the help that I so desperately need (although of course nothing is guaranteed).
I have engaged with everyone who has offered me advice and support, however painful it has been at times. Of course there are things that I wish I could have done differently, like abstaining from self-harm, but instead of focussing on the failures I need to focus on my achievements, however small and insignificant they may sometimes seem to myself and others.
I always thought that being admitted to a psychiatric hospital would spell the end for me but now I am beginning to wonder if it is just the start of a new way of learning how to successfully manage my crises. That doesn’t mean that I’ll never slip up again but it does mean that I have more of a chance of successfully fighting back when times are tough.
Meeting the people that I’ve met whilst in hospital, I’ve recognised that instead of psychiatric hospital being a sign of weakness, some of the strongest, bravest people I’ve ever met are here, generally taking responsibility for the fact that they need more intensive support with their mental illness.
I hope that this helps to challenge the stigma of being admitted to a psychiatric hospital. That people who have stereotypes and misconceptions, or those who want to be able to understand better, will be helped by this. The reason I am so honest in my blog now, is because I’m tired of worrying about what other people will think of me. I’m tired of living a lie. If any of this makes sense to anyone, or you want to find out more, please get in touch either via Twitter @spursbythebeach , commenting or emailing email@example.com .
I wrote this back in November, just after my last post was written : https://brokenglassshimmers.wordpress.com/2014/11/15/off-the-radar/ . For those of you who don’t get a chance to read that post, I spent most of November in a psychiatric hospital ward. This post covers how I was feeling around the half-way point.
At the moment I feel as though I’m waiting for the inevitable. My mental health is still up and down but my bigger worry is now my physical health.
My white blood count, especially my neutrophils have been edging downwards for over a month. Today as I was seeing the hospital doctor on call about my pain levels, I found out that my count has lowered even further. My neutrophil count should be between 4-7, instead it’s 1.
I’ve been told that I have to be observed (blood pressure, temperature and pulse) every 4 hours and if I get the slightest sign of infection I have to inform the staff. If I do get an infection (which is highly likely with my immune system this low) I will have to go to a general hospital for IV antibiotics.
On top of my immune system worries, is the fact that it looks as though I’m having a flare-up of my Ankolysing Spondylitis, but all of the medication that would actively fight the condition would lower my immune system further and the pain meds don’t seem to be doing enough as I’ve spent a great deal of the past couple of days in agony.
I always knew that my condition couldn’t be reversed, but I hoped that it could be stabilised. Now the future looks full of both never-ending physical and mental pain, co-existing in a constant negative cycle.
I have so many fears about getting worse. I worry that I’ll end up in a wheelchair or stuck in bed most of the time. I fear losing the shred of independence that I have remaining, but most of all I’m terrified that it will put too much pressure on me and my partner and that our relationship won’t survive.
People say that if he loves me then he’ll stick by me but it’s not always that straightforward. If he ends up becoming my carer it will increase our stress levels, he will have less freedom and I will end up reliant on him.
Even if he doesn’t have to become my carer, there is still the issue of living with me whilst I’m in constant pain and the mood swings and insecurities, frustration and anger that occur as a result of that.
I feel like my world is getting smaller and that as a result of my physical and mental illness, I’m missing out on opportunities that other people my age take for granted. How can I expect those without my condition to understand my fears and negative reactions, however willing they may be to attempt it.
I feel isolated and afraid that this is the best I can hope for from my life. I know that there are others worse off than me and their bravery puts me to shame. At the moment though, I don’t feel brave. I feel like life is what is happening to me against my will rather than as a result of the choices I make for myself. Does anyone else ever feel remotely like this?
Please feel free to comment, get in touch via Twitter or email firstname.lastname@example.org . I’m hoping that my next update will be within the next few days so I can begin to bring you up-to-date with what has been happening.
The reason I’ve been off the radar for the past few weeks has been that firstly, my mental health deteriorated in October, contributed to by my negative outcome from the Community Mental Health Team Assessment. For nearly two weeks I attended the Crisis Resolution Home Treatment Team day centre.
The CRU is a place specifically for people who are being seen by the Crisis Team and you attend for the period you are with them on a voluntary basis. Once you are discharged from them after the maximum possible period of two weeks, you are supposed to have improved and become involved with other suitable services. This wasn’t true in my case.
My mental health was unpredictable while under the Crisis Team. Things were less bad when I was talking things through with others, receiving support and reassurance, but as soon as I knew all that was going to be taken away from me, I fell apart.
I cried and begged the Crisis Team worker I spoke to, to keep me safe and although I lied and told them I hadn’t been stockpiling medication, I was honest enough to tell them how at risk I felt, that I didn’t feel safe going home. They discharged me anyway, which felt like yet another betrayal from yet another service I’d once trusted.
A day later I was visited by my physical social services care manager and told her exactly what I’d told the crisis team. She thankfully, insisted on calling my GP who I’d spoken to earlier in the week about how difficult I was finding things, and who was already concerned. She asked me whether I would voluntarily go for another assessment at the local psychiatric hospital, and reluctantly I agreed. I expected them to send me home as they usually did but after being completely honest and upfront with them, they asked if I would agree to be admitted and reassessed early the next week.
Monday I was reassessed and by this time the ward doctor had had a chance to read my notes, listen to staff observations as well as input from me. By my second assessment he had decided that I should be here for at least another week, to give the CMHT a chance to reassess me and work out where we go from here.
The doctor referred me to the psychologist and wanted to arrange a meeting with my physical social services social worker as well as hopefully my future CMHT care manager to decide my future, especially now I am strongly considering moving into supported accommodation with live-in staff. I don’t think that I will ever feel completely safe returning to living alone now.
I feel like I’ve lost all hope and trust in the system and really don’t know what to expect. I am going to try to make more of an effort to blog, depending on how well I’m feeling, as I would like to challenge some of the stigma and incorrect expectations surrounding hospitalisation. I will begin to cover this in my next post.
I’m writing this a year older and another mental health assessment result wiser. Yesterday was probably my worst birthday ever, much as some good friends tried to help me through it. In fact their help and my partner is probably the only reason that I got through another day.
CMHT assessment result
I finally got the result of the assessment and found out that, aside from some minimal support/further assessment for my physical disability and the occasional appointment with a psychiatrist, I would be offered no further support for my mental health.
That would be bad enough but just over 2 months ago in the same area, I was care managed, had 10 hours a week with a personal assistant as well as tenancy support and crisis team intervention when it was needed. Now I feel completely deserted. The joke is that I’ve actually got worse instead of better and that I’ve had the physical disability for 3 years with no assessment from the physical disabilities team despite me asking.
The government says that they will improve treatment for service users/patients with mental illness so that they receive the same level of care as someone with a physical disability. Well I’m proof that that’s a complete lie. As usual having a mental health condition makes you a second class citizen, even more so, I believe, than a physical disability, although that is extremely difficult too. How many of you are ashamed to share your mental health diagnosis with others but are happy to share about your physical health? I do this too. Recently I have started to share with others more but it still causes me a lot of anxiety. What will people think of me? Will there be a negative reaction towards me? Disbelief?
Not that I don’t get that reaction about my physical disability. No-one can believe that at my age I have a form/s of arthritis.
The Crisis Team have just visited. I’ve started to get to know some of them so at least there are some familiar faces. They want me to call if I feel like drinking but I just feel like getting completely out of it so that I don’t have to face up to things. Even writing the blog is hard and I worry that instead of helping others like I’d initially planned that I’m just bringing people down.
I’m so scared about what’s going to happen to me. I’m sinking faster and faster and just don’t know what to do anymore. I wanted to be a writer/journalist and make something of my life. Now I don’t even feel like living.
I’m due to see the Crisis Team doctor tomorrow and he will decide what to do about my meds. I also have to ring ESA to see if they are any closer to resolving my benefits being cut. I’m stressed and lonely and just feel like hibernating.
I have been ridiculously bad at posting on a regular basis and I thought that those of you who had decided to follow me or read my posts deserved an explanation. Sorry that it’s quite a long one…
1. I moved to London
As you may already know, my partner (who is in prison) is located near to London and the distance between us and difficulty having regular visits was quite a strain on both of us. We were then informed that he would only be allowed to live in London once released anyway, so I decided to look for ways to return there. At first I was quite excited at the prospect of seeing old friends and to build bridges with my family, the only thing that was an obstacle was how expensive private accommodation was, and the lack of people willing to arrange a council swap.
2. I was preparing to start university (part time)
I had wanted to return to university for some time after having to drop out previously due to my mental health difficulties. I had begun to give up hope of this ever happening but one day I had a brainwave, the cheapest and easiest way to get my foot in the door in London, as well as fulfil my dream of getting a degree, was to apply for university with accommodation. Thankfully I was accepted and began to nervously but excitedly prepare for studying an English degree.
3. My mental health deteriorated
As the move approached my doubts began to set in and my mood deteriorated to such a low level that in the weeks before I left I was visited by the crisis team where I live in Wales on a regular basis. When I arrived in London, instead of things improving they actually got worse and I received some support from the crisis team there while I waited to have my mental health support needs assessed. This struggle continued for the entire time I was in London, meaning that I spent a lot of time hiding away and didn’t get to do even half of what I’d planned.
4. My physical health deteriorated (including a great deal of pain)
Before I left Wales I was trying out a drug called Humira for my Ankylosing Spondylitis. When I left I was no longer entitled to that medication and it had to be reapplied for by the rheumatologist in London. In the meantime I struggled until I was allowed steroids for four weeks while I waited. That helped things slightly but with the pain from that and my mental health I struggled to visit my partner much, which made us both feel awful.
5. I dropped out of university before I’d even started
I realised that I wouldn’t be able to cope with the workload of even a part time degree course. On top of that ESA were threatening to stop the income-related part of my benefit if I did begin the degree which would have meant I would have been unable to afford to pay for my rent (as housing benefit would have been affected) and my carers, who were put in place by the physical disabilities social services department. I had no choice but to withdraw from the course before I’d even started.
6. I moved back to Wales
The accommodation I was in was for students only so when I dropped out I was given my notice to leave the property. As I had only lived in London for 2 months I wasn’t seen as having a local connection to the area and was informed to make my homeless application to the part of Wales I’m from. While I was waiting for a decision to be made on my application, with my date to quit the property fast approaching, some friends said that I could stay at theirs’ for a week until the council could find suitable temporary accommodation for me.
7. I became homeless and had to stay with friends
I moved in with friends and although I appreciate their support it felt awkward living in someone else’s home and having to live by a whole new set of rules. I probably sound ungrateful but I missed the internet and having a mobile signal, bad TV and most of all time to be completely undisturbed with my writing. I’m one of the lucky ones though, at least I had somewhere safe and comfortable to stay. I just hated feeling like a burden.
8. Money stresses (Thanks ESA – part time students don’t even get a loan!)
ESA have since removed the income-related part of my benefit as they are adamant that I am receiving a student loan. Firstly I advised them that I would be studying part time and any idiot knows that you don’t get a student loan if you study part time or if you have studied previously as much as I have. Secondly I told them that I wouldn’t be starting the course and I didn’t. Thirdly how can I be living permanently in Wales and studying in London, do they think that they pay people enough to commute?? The tenancy support for the place I am currently living at has said that she has sent proof of my withdrawal from the university to ESA. Of course it will probably take at least a week before they even bother to deal with the letter, then ages before the decision will hopefully be reversed, and I can’t even count on getting the money they took away paid back to me. Meanwhile I am left to struggle paying for the service charge where I’m living, paying privately for my entire care costs, as I need support but can’t get any help from social services right now, and all the general living costs of supporting yourself when you are disabled.
9. No support once I returned to Wales till my assessment tomorrow
I have had zero support from the local CMHT since I returned, even though I was promised that an assessment would take place the same week I arrived back (it hasn’t), I was receiving care from them up until two months ago and I was receiving care from a crisis team in another area who also contacted them to advise that I would need support. Usually I would have help from a PA for ten hours a week which both myself and social services would contribute towards. At the moment I am paying the entire cost and getting less hours. I would usually have a care coordinator who would be a point of contact for me when I was struggling. I also had a long-term tenancy support worker, understanding doctors and the crisis team. Then while I was in London, my physical health needs were assessed and carers were arranged to help me in the shower and with cleaning and laundry. Now I’m back to struggling alone which is very unsafe for me. It feels as though the CMHT want to brush me aside for as long as possible, perhaps to test out how likely it is that I will harm myself without support. Anything to cut costs. I have an assessment tomorrow which I am not feeling very confident about, in fact I’m completely dreading it.
10. Moving from temporary accommodation to temporary accommodation
I can’t complain too much about my temporary accommodation, I’ve stayed in a lot worse when I’ve been homeless in the past. At least they are warm, I have my own space and feel relatively safe. The worry is how unprepared I am at the moment for a permanent council flat when I am in fact very high or at the top of most of the lists. If I get council accommodation I will at least be able to get a furnished tenancy but if I get a housing association place it will be unfurnished and I will have to start with nothing. Added to that will be removal costs and basics like carpet and curtains.
11. Family stress because I can’t make it back to London for my sister’s baby shower, I have now been replaced by her fiancé’s sister
At the moment my low mood means I am very over-sensitive and paranoid at the best of times but after my recent argument with my sister, because she can’t understand why I can’t afford to drop everything and head back to London for her baby shower, I feel, after seeing my sister’s whatsapp profile picture yesterday, that I have been well and truly replaced with her partner’s sister. It was a lovely shot of the two of them looking…like sisters when in fact she has never once added a picture of the two of us. I am obviously not deserving of sister publicity. I probably sound as pathetic and jealous as I feel but I thought I’d share so the other pathetic and jealous people would feel less alone.
12. Worried about my partner’s fast approaching parole hearing
His solicitor is telling me not to worry him but doesn’t he have a right to know that so far none of the reports for his parole hearing in less than two weeks are ready??! Cannot believe what a shambles the justice system can be. Feels like they are trying to extend his sentence by as much time as they possibly can. The hearing itself is going to be by video-link to save time so there could be numerous technical hitches which could mean that he won’t get a chance to respond effectively to the parole board’s questions. On top of that the probation officer’s negativity about my relationship with him doesn’t make me feel positive either. I am absolutely heart-broken that I can’t be there to support him and feel completely useless.
13. Procrastinating about my writing
As you may be able to understand, I’ve been struggling to focus on my writing, although I have had some great ideas and really want to get started. I have also been invited to join a writers’ group but considering the lack of writing I have been producing recently, I am very nervous. I am hoping that Nanowrimo will be the creative turn-around that I need. Does anyone else participate? The idea is you produce a 50,000 word story during the month of November. There is also the social aspect to enjoy with an internet forum and meet-ups locally. It sounds like exactly what I need.
14. Having an early mid-life crisis
Currently feeling as though I have achieved nothing with my life so far and unsure which direction to go in next especially considering the number of obstacles currently in my path. I am 29 in a few days and want to have more to show for my life by the time I turn 30. I really want this to finally be the year where I take my writing seriously and improve creatively.
15. Being treated like a criminal for having suicidal thoughts.
Last night was interesting. After being instructed by the CMHT (who I called to explain I was extremely depressed and having suicidal thoughts) to call the crisis team here if I needed to, I then attempted to call them three times before giving up and calling NHS Direct. I know that NHS Direct get a lot of bad press but they actually dealt with my call really well and when they suggested that I speak to an out of hours doctor I reluctantly agreed, hoping that he would be as understanding as they were.
The out of hours doctor gave me two options, either go to the hospital where he was based at for assessment that night, ( which I couldn’t afford to do) or he would call the police to ‘check on me’. I explained again that I couldn’t afford taxi fares there and back, which is my only way to travel there but that I didn’t want to bother the police. He insisted so I agreed for the police to come out thinking that they would check on me then leave.
Instead they insisted they take me to the hospital he was based at as he was ‘so concerned’. At one point I had four police officers in my living room and felt so intimidated that I agreed to go despite my money problems. Part of me also hoped that I would finally get the help that I needed as the police said that if I got assessed there then I wouldn’t need my assessment booked in for tomorrow.
I got there and had to be escorted through the waiting room with the officers feeling like a complete criminal just for feeling hopeless and suicidal. Then when I finally saw the doctor and he had spoken to the CMHT he completely changed his attitude and said I could either go home or go to the mental health hospital before getting sent home, as I obviously wasn’t going to do anything.
Ok I didn’t attempt suicide last night when I got home but I do feel backed into a corner and I am really struggling to keep my head above water. The only reasons I haven’t completely given up yet are my partner, the friends who don’t lie about me or tell me to ‘get a grip’ and the tiniest shred of hope that I might get a positive result from the assessment tomorrow. But basically: I AM STRESSED!!!
Please let me know if this helps at all or if there is anything in this post that you would like to see covered in more detail. I look forward to hearing from you!
For a while now, I’ve been off the radar completely as far as blogging and social media are concerned. This wasn’t something I was happy about. In fact, I felt as though I was letting everyone down, my blog readers, my Twitter followers, the people who attended the mental health chats I host.
I wasn’t in a good way. I have struggled with both mania and severe depression and have been seen for a week by the crisis team because I was struggling with suicidal thoughts. Not only is it a miracle that I am writing again, it’s a miracle that I am still here at all.
I still have a long way to go and I really need to stop having such high expectations of myself. I have a house move to sort out ready for the 28th which could be an amazing adventure of university and city-life, or it could mean that I end up in hostels if certain things aren’t resolved soon.
I am extremely nervous. Uni means so much to me, I’ve been accepted on the course, to get this far then miss out would break my heart. I feel like crying a lot of the time. I know I’ve made the best decision for me but it could mean that I lose all of my support and have nothing to replace it with. I’m just so desperate for things to work out for me for a change.
I know that juggling blogging with university and ill health, will be hard work, but it is something that I feel passionate about and want to do.
I guess I mainly want to say thank you to the loyal readers and followers who have stuck around while i’ve felt so lost. You are such a huge encouragement to me and I look forward to getting to know you better in the future.