Today I finally had some news from Department for Work and Pensions (DWP) about my disability benefits and it looks like it will be very good news.
I’ve been fighting for this day for so long, after hearing all the scare stories, I never expected to actually be awarded the rate that I should be entitled to due to the impact that living with physical and mental disability has on my day-to-day life.
It felt like forever to get a result and I’ve still only heard that result verbally so I’m waiting to see it in black and white before I allow myself to get too excited.
That help financially will make such a huge difference to my wellbeing. I will be able to pay for my carer, pay travel expenses to attend additional activities and pay for all the extra costs involved in living with my disabilities.
Now that that pressure is off me a bit, I have also started to try to make decisions about what I want from life. For years I thought that that was university but I’ve realised that my main reason for wanting to go to university was because I thought it was my only route into becoming a writer/journalist. Thanks to blogging, perseverance and hard work, it looks like my writing dream could become a reality.
The decision I must face now is that if university is not an option for me, then what is? I want a challenge but I don’t want to make myself ill. I’m looking into online distance-learning courses in journalism and blogging. I’m also looking into attending a local day centre that does arts and crafts and therapeutic wellbeing courses. I’m also hoping to attend book groups at my local library. I want to try to build my life up and build up a social circle.
How are you trying to get your life back? What do you think will help your recovery?
Tweet @spursbythebeach or comment below. Look forward to hearing from you.
I thought I’d give you a brief update of what life is like, just over a week after I was discharged from a psychiatric hospital.
As most people probably find when they leave a long-term hospital admission, my financial situation is a mess. No DLA (Disability Living Allowance) has materialised since I got out and it could be weeks, if not months, before this is resolved.
This is extremely worrying as I have now got into heaps of debt, struggling to pay for my carer as well as other disability related expenses. Money is such a worry right now, it must be for me to even be mentioning it on here, for me to be crying down the phone to my dad during his out of the blue phone call today.
I spoke to my new Community Psychiatric Nurse (CPN) and social worker, and I’ve been instructed to write a list of how much I owe and to whom, so that they can help me to take action against it. I’m so worried about what that action will involve, and I wish more than anything that my physical and mental health weren’t so bad that I could go back to work and repay what I owe.
Also playing on my mind is that I will be waiting at least 4-6 weeks for an outcome in my PIP (Personal Independence Payment) assessment with Capita. I’m so worried, as without that financial help, my future options for paying for care and mobility related costs, will be greatly limited.
My care managers are trying to make a referral for me for additional support but I will still need the practical support that I get from my carer, as long as I can afford to pay for it, which is becoming less and less likely.
I’ve tried to continue writing, both blogging and creative writing. I’ve sent off a couple of pieces to competitions and the blog has had increased popularity in recent days, but this is causing me quite a bit of frustration as I’m still having to juggle my blogging/writing with how well I feel.
There are days I spend the majority of my time in bed and other times I’m in so much pain or having so much fatigue that I can’t concentrate on what I want to be able to do.
The level of my isolation is still really bad. Hardly anyone has been near me since I got out of hospital and even the ones who have, usually only want to meet on their terms.
I can’t help but feel sad at how far I’ve deteriorated in the past year. This time last year, I was all set to return to London to study for an English degree, I’d even given up my council flat to move into private accommodation nearby. Due to misinformation from different people at DWP, eventually causing me to become even more unstable than I was in the first place, I had to move back to Wales or risk -and here’s the joke – getting into debt.
Now things are so dire financially, I’m miles behind where I was academically, and emotionally I feel like I’m in ruins. I was counting on getting that degree so much, I had it all pictured in my mind, I was going to put everything I had into it and now I’ll probably never get that chance again.
The odds were always going to be stacked against me, living with disabilities, but now I haven’t even got a degree to show for it, my life looks as though it has been one huge waste.
I long to become a writer or journalist. I wanted so badly to get my voice heard but now I feel like it is being stifled.
I get frustrated blogging about how bad things are and I’m sure that you all get sick of hearing about it. Why doesn’t she just do something about it? I bet people are thinking. Well, I’ve tried and it’s left me in a worse position than the one I was in to start with. I feel like there isn’t a single move forward that I can take, like I’ve been checkmated.
Well a lot has been happening in the Brokenglassshimmers household. First of all, as of today, I am officially discharged from hospital. I am no longer a psychiatric ward patient. The enormity of it all, makes me feel emotional. It feels like the safety net keeping me from falling through the cracks has gone and now I’m scared.
Everyone is trying to get me to focus on the fact that I’ve lasted on leave for over a fortnight, but that survival has been such a huge battle to achieve. The Ward psychologist, during our last appointment today, helped me to figure out a few things.
Firstly, if I was well already, hospital probably wouldn’t have been the best place for me in the first place. Being hospitalised, even as a voluntary patient, has a huge impact on your life. Being hospitalised for about four months, the length of time that I spent on the ward, then learning to adjust again to life on the outside, is a huge leap of faith. You have to learn to trust yourself again. You have to find even the smallest shred of hope and faith that you can, and claw back your fighting instinct, so that, maybe one day, you get yourself back again.
Secondly, he talked about my too-high expectations of myself. I’ll be completely honest now and this will probably sound really pathetic, but after a year or more of blogging, I beat myself up for not having got to the level that I want to be at by now. That’s not even necessarily about followers, comments, or likes, although those things are really appreciated. I beat myself up that my standard of writing isn’t good/hasn’t improved enough.
The same applies to my creative writing, the only way that I can improve is by practice and feedback but I lack the motivation to practice and get feedback because aside from my pain, fatigue and concentration problems, I’m not happy with the level that I’m at when I do write. The psychologist encouraged me to keep trying so that I do at least have a chance of success, whatever that success looks like is another matter.
Thirdly, he told me not to put up barriers when I’m challenged. He explained that part of my new psychological input from the Community Mental Health Team (CMHT) will probably include empathy and validation, but that the other part of it has to be about challenging me to change longstanding thoughts and behaviours. He also told me how important it is that I learn to validate myself and that although I use the love of others, mainly my partner, as a reason to keep living, I need to want to live for my own sake, my own dreams and aspirations.
I confided how disappointed I am that I haven’t achieved more with my life, that I feel like I’m just existing, begging for help but not getting enough of it to really have a life.
As I left the ward, I felt so many mixed feelings. A longing to go back to the very beginning and really make the most of every bit of treatment that has been made available to me, a dream to never see that place again, a sadness at the time I wasted whilst I was ill and a recognition of how much I’ve grown and learnt both about myself and others.
In other news, I’m majorly freaking out about my Personal Independence Payment (PIP) assessment with Capita this Wednesday. I’m worried sick that they won’t listen to me or will fail to understand how much of a challenge life is for me. I need them to see how much of an impact my physical disability and mental illness has on my daily life and how reliant I am on the care that my Disability Living Allowance (DLA) pays for, how isolated I would be without that care, how my life wouldn’t be worth living if I lost that help.
My carer is going to go along with me but she’s just as nervous as I am as she knows how much of an impact this decision will have on me.
Lastly, there has been a new addition to my family. Kitty is a beautiful cat who I got from an RSPCA animal rescue centre yesterday and I can’t believe how well she’s already settling in. It meant so much to me having her trust me enough, after all that she’s been through, to lay on the bed with me for a little while on her first night with me. I know that she’s going to be a big responsibility and it is hard looking after her when I can’t even take care of myself . But however much discomfort it causes me physically, the love that she gives means so much that I’m going to do my utmost, with the help of my carer, to take really good care of her.
What keeps you going? What are the things that you beat yourself up about and what encourages you to keep fighting? What would you do if you were no longer beating yourself up about what you get wrong? What could you achieve? Please feel free to comment below or tweet me @spursbythebeach .
Today my best friend turned 30. I feel ashamed that I have done so little to celebrate it with her, and that it’s also left me with very self-centred thoughts about what turning 30 will be like for me, when life feels like it’s on hold due to mental illness and physical disability.
There is so much that I thought I would have achieved by the time I hit 30: Having a family, a career, an active social life. It feels like none of that will never happen. I think instead of focussing on all of the things that won’t happen, I need to focus on the things that could happen. Perhaps they will be smaller goals and achievements than I once would have set for myself (I’m sure even some of them may still prove impossible) but I really believe that it’s worth a try as I’m about ready to give up unless I give my mind something positive and new to focus on.
1. Write a collection of short stories based on some of my life experiences. Do my best to submit them to short story competitions and publishers, to see if I can work towards making my writing dreams come true.
It has been my dream for as long as I can remember to be an author and I really enjoy writing stories, I just haven’t put as much time into it as I should have. I would love to reach 30 and be well on my way to becoming a published author.
2. Build up this blog. It has been a real lifeline for me and I hope in time that it will become a lifeline for others. I would love to use it to challenge stigma and raise awareness of the issues that I, and many others face.
That means making the time to research and post every day. It will be a challenge, especially with my creative writing goal but it’s one that I would be very excited to achieve.
3. Start facing up to my financial difficulties. Speak to someone about managing my debts and apply for all the benefits that I am entitled to because of my disabilities.
This is quite an urgent problem and one I will be discussing with my new care manager when I meet her tomorrow.
4. Start living to a budget. Cut down on reckless spending and become more responsible.
Again, hopefully this is something I can work on with my new care manager as well as looking in therapy at the reasons behind my spending, as I’m pretty sure that many of the reasons are emotional ones.
5. Become less isolated. Work out ways to meet new people/make new friends including therapy groups, mental health day centres and possibly some short courses at my local university.
I’ve been putting off doing this for some time now, especially as I’ve been having to deal with my old enemy, panic attacks, and being around strangers often triggers this. I would like to do something though especially as I feel so alone right now. Another thing I’m considering doing is restarting the weekly mental health Twitter chats that I used to host.
6. Decide whether I want to go back to uni again. I have tried and failed on so many attempts, do I really want to put myself through this?
Last year’s attempt went so badly that it’s sort of scared me off but I’m aware that establishing a career as a writer will be a lot harder without the relevant training.
7. Find a GP who has empathy for how much pain I am in and is proactive about fighting to help me to get the treatment that I need.
I am planning on signing up with a new GP this week as I’ve just moved house. I’m very nervous about finding the right GP though.
8. Try to avoid returning to the psych ward as an inpatient and ideally get discharged from the hospital asap.
I have another ward round to attend on Monday when I will probably get discharged. Maintaining life on the outside though, is the real challenge.
9. Persist with trying to help my partner to get a move to a closer prison as while he is in the current one visiting is pretty impossible for me which is extremely upsetting for us both
It’s so stressful and painful travelling such a long distance for a two hour visit. I just want a chance to see him on a more regular basis.
10. Write to the Home Secretary about my partner’s D category situation and campaign to get him returned to at least open conditions.
My partner has been left in limbo for long enough. Yes he has messed up but he has served the time he was set and now just needs to be given a chance, even if that means supervision, he just wants a chance.
11. Work with my carer and new team from the Community Mental Health services to improve my chances of reaching a better standard of mental wellness.
I should be getting a new CPN (who I will be meeting tomorrow) as well as input from a psychologist. I know how lucky I am to have been given this input and had to fight to achieve it but now the important thing is that I make the most of it as the help could be life-changing and I really need it to be.
12. Share what works for me on this blog so that hopefully I am able to help others.
I really want to help others who are facing the same obstacles as I am, I hope this blog can become a place of encouragement and understanding.
13.Get married. My partner is my first and hopefully, my last love. Neither of us are perfect but I can’t imagine my life without him in it and would love to make that official as soon as possible.
There is a lot to arrange and I know it won’t be easy. A lot of people want me to wait but I love him and our relationship is one of the things that helps me to stay strong.
14. Visit my family. We’ve had a challenging time over recent years and they still struggle to understand me, but I would like to build bridges with them and I’d love to spend some time with my newborn niece.
It will probably be an emotional time full of mixed feelings but it is something that I really need to do asap.
15. Spend more time with old friends. I miss them and no-one understands me better than they do so I need to make more time for them.
This may mean working out a way I can travel more easily or finally making a decision about a permanent move. Either way, my true friends are worth it and I need to give them more focus than I have been.
16. Make a scrapbook of dreams and ambitions for the next 10 years and set about focussing on how to achieve my dreams.
I love scrapbooking and it was a huge help while I was in hospital. I feel like it could be an excellent way for me to focus on my future in a creative manner.
17. Set myself realistic goals, especially to start with, so that I don’t give up or burn out.
This could be by starting with 5-10 minutes a day of writing time or a chapter of a book/ a single short story a night.
18. Travel somewhere I’ve never been before. Or somewhere I’ve been long ago that I liked.
A few possibilities could mean finally getting a passport and visiting my best friend in Sweden or fulfilling my dreams of going to Paris or New York. Alternatively I could start smaller with a weekend break somewhere like Cardiff.
19. If I reach the right level of wellness, apply for the BBC trainee scheme aimed at disabled people.
It has been my dream for years to try for this but I haven’t yet reached the level of wellness that I’d like to be at to make this happen. Fatigue and pain are huge obstacles and I’m hoping that in time I can work out ways to overcome them.
20. Make a decision about whether I should remain in Wales or move back to London. Consider all factors such as finances, social support and health care. Once I’ve made a decision, try to do things to help myself stick to it. Until I make a decision, try not to put my life on hold.
At the moment I’m getting a good standard of mental health care here, but was receiving more physical care and had better medication options in London. Finances play a huge factor so a lot will have to remain to be seen.
21. Persist with my request for a better standard of care for my Ankylosing spondylitis and mental illness, refuse to be fobbed off or made to feel guilty for asking for what I need.
I need to speak to the advocacy service about whether there is any way that I can get more care and support for my physical needs. I also need to make sure that I research thoroughly all the options that are available to me, including by contacting organisations such as National Ankylosing Spondylitis Society (NASS).
22. Make a decision about whether or not to get a cat.
It’s a big responsibility and caring for it may prove a huge strain but it could be a challenge for me to learn to adapt better to.
23. Try to stick to a routine a bit more so that I over-do it less and get better at balancing activity with rest.
I tend to overdo it then crash for days afterwards. I need to get better at balancing out my energy levels by combining any activity with periods of rest.
24. Look into ways I can improve my opportunities to become a freelance writer/journalist and try my best to make it happen.
Read up on ways to break into the industry and spend more time and energy getting my blog posts to a standard that I am pleased with and hope that that speaks to future bosses.
25. Have a relaxing holiday, ideally somewhere I can focus on my writing.
I’ve heard of writing holidays and this sounds like something that is right up my street and definitely something that I should research in the very near future.
26. Make more of an effort to go to literary events both here in Wales and in London and elsewhere. My dream is to go to the Hay festival of literature. If I can’t make this year’s event I should definitely make sure I attend it next year.
Research and budget for whether a weekend in Hay on Wye would be possible as it would be a dream come true to attend it.
27. Set aside time every day for writing. Everything from blog writing, journalism, creative writing exercises, drafting stories.
It would probably also help to set aside a specific place for me to write, perhaps investigate some sort of laptop desk and somewhere to organise my writing research.
28. Set aside time every day for reading – blogs, newspapers and magazines, poetry, books, writing tips etc. Make notes on what I learn.
Reading used to provide such escapism for me but now I need to start reading in a more educated way, learning from those who have gone before me.
29. Try to have more of a distinct online presence. I want to spend more time focussing on my unique qualities instead of the things that have been holding me back.
I need to develop my own clear identity and work at getting that across to people, trying to break the mould instead of fitting into it.
30. Try to make time just to relax, unwind and have fun!!
Pamper sessions, magazines and trashy tv. Anything that helps me to switch off and stops me overthinking.
Anyway enough about my 30 things before I reach 30. What would you like to achieve before your next big birthday? Answer in the comments section below or on Twitter @spursbythebeach.
I haven’t posted on a regular basis in sometime so I really do appreciate the fact that I have some very loyal, patient readers left. It really has meant so much to know that in my darkest hours, you hadn’t given up on me. That became one of the things that got me fighting again.
It’s been a challenging week so I thought that I’d share with you some of what I’m facing right now. I do this mainly because I wanted to feel less alone and also because I wanted to reach out to others facing issues like these.
If you’d like to continue the conversation after you’ve read this post, you can add a comment or, as I’m always on Twitter, you could add me on @spursbythebeach . I look forward to hearing what you think.
I’ve been refused a care assessment from social services physical disabilities team.
Based on two Occupational Therapy assessments that took place while I was on the psych ward, and, I had been told previously, were being ignored.
Apparently I was refused a care assessment because, firstly, I ‘need to remain as mobile as possible’ despite the fact that I am on crutches and high doses of pain meds due to the agonising pain I am in, on a near-constant basis in my back and knees.
Secondly, I ‘didn’t ask for help’ that is because help was never offered to me and most of the time I was too embarrassed/proud/scared to ask as a 29 year old woman. I think this is probably the same at any age.
Thirdly, the borough in London that I spent the summer in, arranged an assessment with a social worker who, after investigating my medical evidence and really listening to what I had to say about my care needs, had daily carers put in place within the week. Why then if my physical health has worsened since then, is the same not being done in Wales?
I actually had a chance to confront one of the OT’s who made this judgement today and he just said we will have a ‘longer chat’ when he drops some equipment off to the house next week and mentioned that I could speak to advocacy about appealing the decision and that’s now top of my list to do. I just think that receiving the right care shouldn’t be a postcode lottery.
Another thing on my mind is my PIP assessment fast approaching. It’s a real worry as at the moment I am getting myself into masses of debt while my DLA has been stopped since I’ve been in hospital, as I’ve had to pay for a carer privately with no help from social services at all so far. This along with still waiting for my new care manager to visit, is causing me a great deal of worry and stress.
I know I have a lot to lose with this PIP assessment so I had a good chat with the two amazing people who run the NASS helpline and became a member. I also rang my rheumatologist and he has brought forward an appointment that was due on April 1st to next Wednesday. I’m just really desperate for him to do something to help me and find out exactly what is going on wiith my body.
I am still on my first week of leave from hospital and I have yet to be officially discharged although hopefully I will be as of Monday next week.
This has probably been the most challenging week of my life.
I got out of hospital and really hoped that things could go back to the way they were before with my friends. In most cases there is too much history there now, I’ve been too much of a let-down. As a result I feel lost. Either they don’t believe that I will ever fully recover (perhaps I won’t) or I’ve put them through too much during the past few months and they can no longer get past it.
Some people have stuck by me, the main ones being my carer, my best friend who lives in Sweden and my sister, who I’m beginning to build bridges with.
There are a couple of others who are feeling worried since my recent issues with paranoia, which is a vicious circle, as this was probably brought on by the stress brought on by loneliness and isolation.
Leaving a psych ward can be one of the loneliest times that you will ever face. You go from being around lots of people – staff and patients – 24 hours a day, to all of a sudden spending long periods of time by yourself.
I’ve decided to invest in a small TV but I’m just hoping that it doesn’t distract me too much from my blogging. I really feel like the only place that I can feel safe to say what’s really on my mind, and to generally be understood, is this blog.
Aside from the loneliness of leaving hospital, I’ve had to try to start again in a flat that I’ve hardly lived in which is still very chaotic as I need to finish unpacking, get into some kind of routine and start doing the things that I love again like reading and blogging.
I’ve just upgraded the blog and I’m quite pleased already. I’m always open to feedback and suggestions and would appreciate any constructive criticism anyone could offer me.
I want to start moving forward and looking to the future I’m just not sure how to go about it. I really want this blog to become a more positive place but most of all it has to be an honest place which means that I may not achieve positivity all the time.
I’ve spent some time recently considering how I want to move forwards with the blog and this year I want to really fight to raise more awareness, lessen feelings of isolation, and offer an alternative to mental health stigma and ignorance. I’m hoping that this blog can become a place where people feel they will be understood, and that raises issues that concern both myself and the readers of this blog, so that more people will know of the struggles faced by those with mental illness and/or physical disability, exactly how hard we have to fight.
Well I’ve skipped a task again as I’d already kind of answered the last one, plus this task applied more two days ago when I first wrote it out in rough. Sorry for my delay in posting, my fatigue has been absolutely awful.
Make a list of things that you feel upset about right now. Write down as many as you can think of until you can’t think of anymore. Then choose the top 5:
Not being able to do everything that I want to do for myself:
From carrying myself a cup of tea (at home I have a hatch so don’t have to rely on the kindness of others) , to struggling with grooming, shopping and isolation because I struggle to get to places. Even at home, the local bus stop is minutes away from me but too far for me to get to without severe pain so I remain reliant on taxis or isolated in my own home.
Being on a psychiatric ward
In myself, I feel that this proves that I am weak, that I have given up, lost the fight. The atmosphere is tense at best, there is a lot of paranoia, including from me, which makes it an extremely difficult place to be. On top of that, it’s difficult to unwind, you can’t usually watch TV because of the constant background noise, even reading in your own room is a challenge. This is especially the case because if you do start spending a lot of time in your room then people assume you either have a problem with them or are being stuck-up. On the other hand, if you do come out you have to deal with everyone else’s problems and needs, as well as your own.
I’m worried about whether I’ll ever get to see my partner again.
It’s been 6 months and I miss him so much [especially as I’m typing this while we’re apart on Valentine’s day] . It’s hard because we get to talk so little, writing to him has been hard as my fatigue has been so bad and visits are impossible while I’m a psychiatric inpatient and my money has been cut as a result. Plus the thought of the journey then being trapped in a visiting room with loads of strangers, I just don’t know if I could do it. That thought makes me feel so guilty because I think I should be strong enough to do it for him. I miss him so much and I feel like a complete failure.
Waiting for the result of my hospital professionals’ meeting.
My anxiety about this is overwhelming and I am so convinced after two no’s from my previous assessments that it will be another no from them. If that happens my fear is that I’ll be stuck on a psychiatric ward long-term and I don’t think I could cope with that. My head is such a mess and I don’t see how I could cope alone in my flat without a decent level of support. The option of staying here long-term or being home without help, makes me want to cry.
My poor money-management.
I’m in debt, I’m trying to pay for my carer again because I couldn’t cope without her. I’m struggling to pay for the costs of my disability without Disability Living Allowance. The bills are mounting up and getting ignored, I’m getting chased for past debts and the whole thing is just making me feel ill.
My anxiety is causing me anxiety.
I’m either off my food or binge eating, I’m feeling sick and I just feel like crying all the time. I haven’t had panic attacks this bad since I was 19 (I’m 29 now). I just can’t cope. I can’t handle crowds (even small ones), I can’t handle being alone. It feels like life is impossible.
My paranoia is making me feel so depressed, I’m convinced that the whole world is plotting against me.
I don’t trust most people, I’m even convinced that my partner, who I adore, will get sick of me and leave me. All of the emotional abuse from my childhood is coming back to haunt me. My friends aren’t trusted to really care and I don’t even trust the food on the ward so I’m living on snacks. I’m terrified about what is happening to me.
Being many miles away from my family and friends.
I keep beating myself up for not working things out and managing to stay in London. I feel like I was happier and safer there. I wasn’t cured but I had more support and distraction, I was loved. My partner isn’t far from London and my entire family are over there, including my newborn niece. I feel like I’ve lost everything.
Negative comparison to others
I’m constantly beating myself up for not being a pro blogger by now (a year), a top published author, having the perfect figure and having finally got that Phd I’ve always dreamed of getting (when I didn’t even finish my degree). I compare myself to friends and family who have successful marriages with kids, and I compare myself to others who have talent, dream jobs or travelling opportunities.
Everyone is always on at me to be kinder to myself but I feel like to do that, I should be in a better place in my life rather than unemployed, stuck on a psychiatric ward.
Picking the top 5 things that upset me is really difficult as all of the various things merge into one. If I had to pick, it would probably be:
1.Worry over my partner
2.Frustration over not being able to look after myself properly (physically and financially.
3. My CMHt assessment
4. My anxiety
5. My negative comparison to others.
Day 5’s task, is for each of the 5 things you identified (in the last task), list 10 things you can do to gain control of the situation then pick the top 3 things from each list.
As I want to include explanations with each possible solution before I make my choice I have decided to split each problem into a post on its own so there will be 5 posts linked to this one then later I will hopefully do a follow-up post/s letting you know how I got on with my solutions.
How would you deal with these problems? Are you struggling with similar difficulties? What are your ways of coping? You can comment below or Tweet me @spursbythebeach . I really do look forward to hearing from you.
Make a list of all the things that you are grateful for-big things, small things and everything that you can think of:
1.My partner…We’ve had our ups and downs over the years and he is currently in prison, miles away from me, but he is such a huge support and I really do love and miss him so much.
2. My friends…it’s true that friends are the family you choose and mine have been through a lot with me. Being in a psychiatric hospital it’s surprising that not only do you make new friends who understand what you are going through, but you also realise, who of your existing friends, are your true friends.
3. My family…especially my newborn niece. I never thought that I could be more proud of my younger sister than I already was, or be so broody. Sadly, thanks to the meds I’m on, I’ll probably be unable to have kids of my own, so instead I will be spoiling my perfect little niece.
4.Being able to read…although it’s a battle at the moment, it helps me to get lost in someone else’s story, escape to another place/world. Reading has always been my refuge. I’m gradually clawing back the concentration levels I once had, which is a real battle against fatigue caused by the form of arthritis that I have , mental illness symptoms as well as the medications for both conditions. When I’m not able to read I feel angry, frustrated and alone.
5. Being able to write…This is another battle, especially when I’m constantly struggling to keep my eyes open. I love being able to express how I’m feeling deep inside in a constructive way. I like the writing community that I’ve found and I’m beginning to feel a part of it by blogging. I also love that I’ve been able to share my experiences with others as well as to raise awareness of mental illness.
6. My personal assistant/carer…although I’ve had to pretty much let her go for the time being till my finances are in better shape, she has made herself available, even now, for the measly number of hours I can offer her, which shows me what a true friend she is, as well as the fact that she’s made a huge positive difference to my life.
7.Arts and crafts/being creative…I love cardmaking, scrapbooking, clay modelling/sculpture making, photography etc. I love spending time being creative as it helps me to escape my thoughts for a little while and gives me a more positive focus.
8.Watching good/bad TV…A personal favourite is Home and Away. Again, anything that gives me escapism and helps me to lose myself in something else for a while, distracting me from my thoughts. I love the thought of sunning myself on a hot, sandy beach eyeing up the even hotter surfers.
9.Shopping…especially for books, clothes, toiletries and arts and crafts stuff. I tend to overspend though which can be a bit of a problem.
10. Pampering myself…getting someone to do my hair, doing my make-up or trying out new outfits. Anything a bit girly and something to take my mind off things.
Well considering how negative I am feeling at the moment I think 10 things to be grateful for is a pretty good start. My eyes are quite heavy again at the moment, so I’m going to leave it at that. What things are you grateful for? Feel free to comment or tweet me @spursbythebeach .
Write a letter to a person you are angry with. Say everything you are feeling and wish you had the nerve to say.
Dear David Cameron,
Thank you for helping to make my life even more of a misery than it already was.
First of all, your cuts to social care services make getting the help I need, near impossible. You make getting help from physical disabilities teams as well as Community Mental Health Teams, almost impossible. It has become a complete postcode lottery.
When it works
In some places, having a mental illness, full stop, means that you can get the help you need, especially without having to become a psychiatric hospital inpatient.
On the two occasions I’ve returned briefly to London, I’ve found good preventative measures in place that are simply non-existent in Wales. Ideas like the south-west London recovery college, this runs courses on better management of your mental health condition, as well as more therapeutic classes such as how to tell your story and journalling for self-expression (see my previous post) https://brokenglassshimmers.wordpress.com/2015/02/01/mental-health-recovery-idea-journalling-for-self-expression-day/ .
In Islington they have come up with the fantastic idea of having crisis houses, which people in mental health crisis can move to for a couple of weeks, as an alternative to going to hospital.
The only issue with these crisis houses are that the buildings that house them are rarely disabled accessible, which in reality, with the increasing number of disabled people, the likelihood of them experiencing both physical and mental illness has increased, with the two types of disability aggravating each other in a vicious cycle.
Why not UK-wide?
These ideas, although far from perfect, should be learnt from and rolled out on a UK-wide scale, instead of it being the case that getting the right care is dependent on where you live.
Your tightening up of criteria for help from a once great idea, Direct payments, has made life even more challenging for those living with physical and/or mental health conditions. The only thing I am guilty of, is moving out of the area I live in for a couple of months, before returning. As a result of that, I permanently lost my help from the Community Mental Health Team (CMHT) , both care management and Direct Payments, as well as my independence.
A daily struggle
I struggled to pay for my carer from my DLA once I returned, as going without her would probably lead to suicide. Instead of me contributing half the cost of my care and social services meeting the other half, I have had to pay for all of it, as well as the other costs related to my disabilities. The struggle financially as well as mentally, resulted in me ending up in a psychiatric hospital as an inpatient.
Inpatient DLA rules
The really ‘well thought out’ rule of stopping DLA for hospital inpatients once they have been in hospital for 28 days, is another idea that makes no sense to me. Just because someone with a disability/illness is in hospital, doesn’t mean that they can stop having a disability, or stop the additional costs that are involved in having that disability.
I feel especially bad for people who have leased cars, mobility scooters or electric wheelchairs through the Motability scheme. As well as that, what happens to people, like me, informal psychiatric patients who have some remaining freedom, but who rely on a carer to help to keep that freedom a reality?
My carer was the only reason that, till now, I didn’t become institutionalised , and was the difference between me getting off the ward or being stuck here day in, day out. Now I have lost both Direct Payments and my carer as I cannot afford to keep my carer for the moment and I’ve ended up losing her to someone who can afford her.
Problems piling up
I am absolutely heartbroken. In hospital I have been threatened and scared, despite the efforts of some of the few kind, but underpaid and overstretched nurses, I feel afraid and alone, that I am an easy target, and that this could cost me my life.
You may wonder why that is? Well add financial pressure, to loss of mobility and independence, on top of physical disability, mental illness and isolation. With all of that piled on me, whilst being expected to survive on my own, is it any wonder that I struggle?
My only friends are either completely lost as to understanding what I’m going through, or they themselves are in the mental health system and struggle to deal with my issues on top of their own. My carer was the only one who didn’t find me too much for her and now I’ve lost her. I’m so broke that I can’t even afford to visit my family, including my newborn niece.
Walk in my shoes
Just for a minute, take a walk in my shoes. Pain, fatigue, a constant desire to harm yourself, isolation, loss and an unstable mood. I feel powerless over my own life and what happens to me, which is a scary place to be. You have power over the lives of others as well as your own life. You have the power to change my life.
So next time you talk about the need to reduce mental health stigma, think of the practical things that you are able to put in place to do just that.
My mind returns to a few months ago, when I had a life, ambition, was closer to my loved ones, had a suitable place to live and was far less isolated. If I hadn’t been wrongly advised by DWP and majorly let down by your government, I might actually be in a better position to cope right now, instead of in a room on a psychiatric ward.
Whether or not I make it, as I have lost faith that anyone can, or will, be able to help me, I want you to really think about what you are doing. I want you to consider the destruction you are causing and the lives that are being lost as a result of your cost-saving measures. I’m sure even after you do that, you will return to your cosy life and your cosy family and forget all about us but I want you to spare at least one minute of your time, thinking about what you have done to us.
One recovery strategy that has aided me in the past to improve my mental health is Journalling for self-expression. My task, for at least the next 32 days is to follow the guidance of montrealtherapy.com , Journalling for self-expression tasks .
Each day I will attempt to complete, and post, my target for the day. Others are welcome to join me in this . If you do , post your links or write your thoughts in the comments section below.
This task stemmed from courses I attended at South-west London ‘s recovery college. These were aimed at Journalling for self-expression and telling your story, both of which helped me to open up better, which probably led to me writing this blog.
The first task is to write down what happened that day and how you felt about it (my entry is actually about Wednesday, although I will try to stay more up-to-date in future). I wrote as much as I could remember about a 24 hour timeframe .
I think I woke up pretty early on Wednesday . After a cup of tea, I did some preparation for a blog post but mainly ended up chatting to other people on the ward. The downside of being a blogger in a psychiatric hospital, is that it’s so easy to get involved in other people’s problems/dramas, to procrastinate and never get anything done. To fight against that, and because my body seems to be most active at that time, I’ve been waking up early and trying to get my writing done in the fairly quiet hours on the ward.
9am came around before I knew it and my advocate had arrived. The wheels are in motion for me to have a meeting on the ward of all the professionals trying / trying not to be , involved in my care. This will include the hospital team, my physical disabilities social worker, the CMHT (Community Mental Health Team) and the crisis team.
After that I managed, in a long, tedious, drawn-out, painful process, to get ready for the rest of the day ahead.
What a mess
After this, all I could think about was my partner and helping him out of the financial mess he’s got into in prison, despite the fact that I knew I’d be broke , with big bills due out and my DLA being stopped and overpaid due to the 28 day hospital admission rule not being explained very well by the ward on arrival.. Part of me was also worried about being moved to another ward for a period of time. I know that my mood is currently unstable and I didn’t want it destabilised further by constantly moving between wards.
The great escape
It crossed my mind to do a runner from hospital and go to stay with my mum in London (as you can see, I don’t always think things through with complete clarity). My mum refused to let me stay with her which distressed me further so I got even more distressed. I told the nurse I then went to speak to, that if they wanted to move me wards , they would have to do it forcibly. The nurse was taken aback as I’m usually easygoing, and tried to reassure me, but I was having none of it.
I felt backed into a corner with the quicksand of a mixed episode /rapid cycling deepening and deepening. I was especially concerned about seeing a woman I’d previously been friends with.
After that I called my carer to ask if she could come in early for her last proper day, as I’ve had to let her go, at least temporarily . I was so on edge, I just felt like I was going stir-crazy in the hospital and it made me realise how bad I was going to feel, and how isolated I was going to be in future, without her.
A fixable mistake?
Just before my carer arrived, I had a phone call from my tenancy support worker about my rent arrears. It looks like there has been a mistake with the demand and it is being looked into. I still feel fretful about it but the tenancy support worker has insisted that she has not given up and will be looking into it.
My carer then arrived and we went to sort out the financial stuff that needed doing. This included a problem that had been causing me a great deal of worry.
I went for brunch after a bit of window shopping which ended up delaying me further so I had to rush the meal to get to my friends’ house as they had written me a supporting statement for my PIP assessment form.
What they really think
When I read the statements the ward manger, my carer and friends had written, it made me recognise a few things. Firstly, how much of a trigger my family are to me, secondly, how little independence I have, thirdly, how worried others are about me and lastly, how much I rely on help from other people. This caused me even more anxiety about losing my carer.
We went back to the flat as I was expecting the OT (Occupational Therapist) to visit, furniture to be delivered and to fill in the PIP assessment form with my carer. Nothing got done and I ended up taking diazepam that I had left over from an old prescription, something that, as a hospital inpatient, I am not allowed to do.
I needed to get out and followed my usual pattern of being mixed (depressed and on edge) and overspending money that I really don’t have. I went to Hobbycraft, which is always dangerous for me. In the end I bought some scrapbooking stuff, another book to attempt to organise my chaotic life in, in a pretty way.
I then spent more in M & S getting food treats for me and one of the other girls on the ward.
After that was my last drive back with my carer which made me feel really lost and hopeless.
An old friend
I got back and one of my friends had sent me her number via Facebook and we talked. It turned out that she was depressed and what I said about needing to seek help seemed to have little impact. I pleaded with her to contact the hospital and she said that she would. Not long afterwards I received a text message saying that she had taken a serious overdose. I met her recently in hospital and I don’t have her home address , so, out of my mind with worry, I had to inform the ward staff. They tried to reassure me that they’d called the police and it was ‘in hand’.
After this I deteriorated for most of the evening, I felt really depressed and on edge with the occasional glimmer of ok when friends were able to distract/comfort me, which would then leave me feeling guilty. It didn’t help that I had pain in the opposite arm to the one I have suspected nerve damage in.
What a start to the day
The next day started badly and I ended up experiencing a stabbing pain in my knee while I waited impatiently to see the doctor. The pain didn’t last long but it scared me because of the amount of pain meds I’m already on and how bad the pain was.
When I saw the doctors ( I ended up seeing two) , they said that they didn’t see any evidence of obvious inflammation, this made me feel like they didn’t believe me, although they disagreed. They just told me that the rheumatologist needs to see me. This would be all well and good if I’d been able to visit my flat sooner and received the letter from him in time to get to my appointment, which was due yesterday.
I felt so angry, frustrated and hopeless. This really led to me feeling suicidal. My mood drops so quickly lately that it’s frightening.
A bad combination
It was so hard, with a combination of disturbing memories, stress in the present and fear of the future. There was so much that I longed to do but my belief was so strong that I felt that I couldn’t do it anymore. I try my best to keep on keeping on but it is so hard at the moment. My blogs are kind of safety factors as there is so much that I want to do with them. I just need to believe that I can do it.
My overriding mood for that 24 hours was exhaustion/fatigue whilst being extremely on edge. I’m so scared about how I’m going to cope. I have so many things in my life that need to be sorted out, I just can’t focus on anything in particular and I worry that I will never be able to.
Fearing the future
I’m afraid of isolation, of my pain and mobility levels getting worse, and that despite my efforts, my mental health will continue to become more and more unstable, with mood swings that will lead to me spending more and more time in hospital .
I’m sorry that this has been such a long, overly negative post. I’m not even sure if I will post it.
The phone call
My partner called. He tried to convince me that I need to ask for help more often. He also told me to think about who my friends are, because although people aren’t mind readers and have their own problems, it’s obvious to everyone, especially those who know me, what my difficulties are.
Is anyone else struggling to deal with having a physical disability and/or a mental illness? I feel so alone right now, it would help a lot to know if there are others like me and how they cope. Thanks for listening.