When you feel like hiding from the world

Kitty feels like hiding from the world

For far too much of my life, I’ve felt like hiding from the world. It started when I was a child. I was ashamed of the way I looked, afraid of the bullies, worried my parents would embarrass me/kick off when they were drunk.

Now I’m almost 30 and not a lot has changed. This time it’s social anxiety, fear of being judged for my disabilities and severe depression, in which I feel like being around people just makes me, and them, worse.

There are things I’d like to do: Blogging meet-ups, physiotherapy groups, day centres, book clubs. Even when I was thinking about starting university the anxiety about being around hundreds of people during lectures, freaking out about fresher’s week and how I was going to go it alone as a disabled person and make friends, was tearing me apart.

I’d love to have another chance at education but at the moment my anxiety and depression are so bad that I’m constantly changing my mind about whether or not I should give it a try, because I don’t feel like I’m good enough. I’m not living, I’m existing.

I want to be a journalist and was given the opportunity to blog for my local newspaper but I’ve bottled out of doing it more than one time because I’m worried I’ll make a fool of myself. I know that sounds strange coming from a mental health blogger, but I’m ashamed to admit that negative feedback terrifies me. It causes me to beat myself up and is the reason I’ve spent too long hiding away or not doing the things that I love.

I want to change and I know that the only way that I can do that is with one small step at a time. I’ve started Slimming World and trying to wear make up more often so that I can be more physically confident. Mentally, is another matter entirely. I’m so scared of getting hurt or messing up. I’ve just started seeing a psychologist and I’m really hoping that it makes a difference as I’m so tired of being like this.

Being honest about how I feel, especially on here, helps a lot. The support I’ve received from Brokenglassshimmers’ followers, has meant so much.

I’m thinking about branching out with the blog too and doing an email newsletter for followers to chart my progress, what works/what doesn’t, perhaps even interview some of you too if you’re interested. If you would like to receive something like this then please let me know. I’m available on here as well as on Twitter @spursbythebeach .

When the safety net is gone

The past few days has proved to be extremely challenging. My partner is having difficulties in prison that he was unwilling to share with me and I was beginning to spiral downhill again as I’m used to us sharing everything with each other. It felt like a very lonely place not to be a part of that team, I’d begun to feel reassured by.

A similar thing has happened with my friendships recently too. Whereas before we would lean on each other, now we have become distant and wary of sharing what’s really on our minds.

I don’t know if it’s just that certain relationships reach a point where you’ve given all you can give, and you have nothing left to offer. I certainly don’t believe this to be the case with my partner. I understand that, especially where male pride is concerned, it can be hard to open up when you feel you’ve got it wrong. Female pride is bad enough.

With the friendships though, as days pass without hearing from them, heading into weeks, I feel that it is about more than pride. I’ve pushed them too far with my emotional desperation, the needy phone calls and the consequent pushing them away, when I’m ashamed of how much I’ve depended on them.

I think the important thing for me to take from this, is that I need to choose the right people to lean on.

Instead of my partner, who is powerless to help me and likely to react in stupid ways in his desperation to try, I should be leaning on my care team. I have been lucky enough (after a lot of fighting) to have been allocated a Community Psychiatric Nurse, a social worker and a psychologist. They are also trying to arrange a support worker to take some of the pressure off me paying for my carer as much as I do.

I find it hard to seek help from them though. I worry that they’ll be too busy for me, that I’ll get rejected, or that how I feel will be belittled.

Well today was an important step forward, I reached out to my CPN, explained my difficulties to her and listened to what she had to say in response. She actually made a lot of sense!

It’s hard sometimes, not being able to share everything that happens with my partner, as it happens. Or even to just share with other likeminded individuals. I’m trying to face up to this by starting to attend two book clubs in my local area next month. I’m also still considering part time study for four hours a week in creative writing and literature. After the debacle of how ESA dealt with me last time I tried to further myself, I’ve been quite put off daring to take a step forward.

Alternatively though, there have been some positives from the past few days, I’ve received some mentoring from a couple of newspaper editors and I may have an exciting new project in the pipeline, watch this space…

This proves that when I take responsibility for my own happiness, instead of leaning so heavily on others, good things can happen.

What good things would you like to see happen in your own life? Either comment below or Tweet me @spursbythebeach.

Free at last, well officially anyway.

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 .

30 things I want to do by the time I turn 30.

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.

What’s on my mind…

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.

Journalling for self-expression day 5 part 2

For each of the top 5 things that you identified [in the last task] https://brokenglassshimmers.wordpress.com/2015/02/14/journalling-for-self-expression-day-4/ , list 10 things that you can do to gain control of the situation. Pick the top 3 things from each list:

Part 2: Frustration over not being able to look after myself properly (due to physical and mental illness).

I will now list 10 things I can do to gain control of my frustration and I will then underline the 3 I believe to be the most helpful.

1. Accept the things that I can’t change and change the things that I can.

The things I can’t change are:

-Ignorant attitudes

-The fact that I have disabilities

-The fact that due to my pain and mobility problems, I can’t travel far and need help with things that other people take for granted.

The things I can change are:

-How informed those around me are about my condition.

-The people I choose to spend my time with.

2. Fight back for better pain management.

When I next see the rheumatologist, explain how important that I feel it is that I have a medication that is fighting the condition and that I feel that instead he has given up on me. Poor pain management only serves to increase my levels of anger, depression and negativity.

3. Ignore ignorant attitudes surrounding my physical and mental health, especially those which come from my family.

They’ve had plenty of time to ask me/research my conditions and they still show no interest whatsoever. No matter how painful it is, it’s time to move away from them.

4. Start being kinder to myself and accept that I am deserving of help.

This has been a complete battle for me since I was a teenager and it would be nice if things started to change.

5. Start a friend shortlist where I remove from my life or lessen the involvement of, friends who aren’t really interested. I’m tired of these one-way friendships.

This is one of the things that I will find the hardest to do, as once they are in my life, I hate letting go of people. The way I’m now looking at it is, the more unnecessary friendships I let go of, the more I make room for constructive new friendships, painful though it may be to say goodbye. Friends I am keeping in my life, at least short-term, I need to make more of an effort with, at least over the phone, by letter or email, to see if that effort is reciprocated.

6. Look at equipment that I could get that will make my life easier and more productive.

This could include a new, specialist built laptop which includes suitable hardware and software as well as aids and adaptations around the home and out and about.

7. Research the help and support that I can get now that I am staying in Swansea .

(I’m pleased to announce that I am being care managed!)

8. Start trying out different self-help strategies to improve my physical and mental health.

This could mean light physiotherapy exercises, heat and cold packs, a tens machine, online support websites and other strategies and techniques to better manage my physical and mental health.

9. Join forums and Twitter chats for people with mental illness and physical disabilities. If none are available then create some.

10.Be honest with people about what my struggle is actually like and what will help.

I could finally write that book that I’ve been talking about for years (I’ll keep you posted!).

If you noticed that some points were underlined as you went along, those are the key points that I will be trying to work on from now on.

Journalling for self expression day 5 part 1

For each of the top 5 things you identified in the last list, list 10 things you can do to gain control of the situation. Underline the top 3 from each list.

Part one:Worry about my partner

Things I can do:

1. Gain more control over my finances, especially by getting out of hospital as soon as I am ready as well as trying to send more money and visiting more often.

Part of this involves him getting a move to a closer prison so at least then I can come up on visits.  Six months without visits and support is a long time to go.

2. Write to my partner more often

At the moment, after a lot of nagging, my partner is writing to me regularly. Due to an arthritis flare-up and severe anxiety and depression, I have had really bad fatigue. I need to get better at juggling writing with rest. I also need to get better at asking for medications on request for pain, when I need it, which I usually do. I just hope that this makes a difference with my levels of pain and fatigue.

3. Be more honest about what I’m struggling with, to my partner and others

It helps so much Blogging and Tweeting about what’s on my mind. There is someone even more important that I need to speak to – my partner. He really loves me and wants to help, he wants to know how to help. Sometimes I’m not sure what will help me, but if I keep him informed of what is happening and advise him of the little things that make a difference [like today over the phone he read me out a page-long love poem] then he has a head-start on how to help me.

It’s hard to be honest sometimes knowing that if I’m too honest, I’ll leave him feeling worried, upset and powerless to do anything. Often I just tell him the partial truth when the full truth would leave him worried sick. In reality I need to make sure that he has the full facts in order that he can show greater understanding.

4. Work on my anxiety so that I could emotionally cope with a visit.

I have apps on my phone, books and websites I could use as well as a weekly appointment with a psychologist. My next big challenge is to spend most of next Wednesday in my flat, probably alone, which I’m really worried about how I’ll cope with.

I need to utilise what I’ve been taught and start to put it into practice. More on coping with anxiety soon.

5.Make sure that my partner continues to write to me regularly.

This sounds a bit unfair when I’m not writing to him as much as I used to. It does make such a huge difference though, hearing from him.

6. Encourage my partner to open up to me more often so that I know the real things that are bothering him instead of fearing the worst.

I always know when something is wrong with my partner so when he refuses to confide in me , not only does it hurt, but it also causes me to imagine that he is keeping something far worse from me than he usually actually is.

7, Accept compliments from my partner. Really let all the good things that he says sink in, instead of believing all the negative things from my childhood.

I’ve been put down for so long, by so many people, that I need to unlearn all of that stuff and keep in mind the kind things that my partner says instead

8. Speak to the Assisted Prison Visits Unit to discuss options for a visit to be planned and paid for in advance by them.

They usually very generously refund the cost of visits if you are on certain benefits/a low income and occasionally they offer this help for me, I need to find out whether this is an option for me within the next month or so. I miss him so much.

9. Write a letter to the prison governor supporting my partner’s request for a move to a prison closer to me

I’m hoping that after hearing the difficulties I face visiting my partner due to my disabilities that they will take pity on us and move him to a closer prison.

10. Once I’m out of hospital, maybe even before, start planning for mine and his future together. Things like visits, planning for our wedding and building a home together.

All I want from life, well my main aim really is to spend my life making mine and my partner’s dreams come true.

I’ve gone back and underlined the top 3 I want to try and have included an explanation of how I intend to follow them. Does anyone else have any ideas that I haven’t thought of? Or is anyone else struggling with similar issues? Get in touch in the comments section below or Tweet me @spursbythebeach. I look forward to hearing from you.

Journalling for self-expression…day 4

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.

Top 5

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.

Journalling for self-expression day 2

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.

Postcode lottery

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.

Vicious cycle

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.

Direct payments

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?

Friendship

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.

Practicalities

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.

If

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.

Living with loneliness

I was reading a feature in the UK edition of Glamour, January 2015 issue (page 46) earlier today, which informed me of the maybe not too surprising statistic, ‘48% of us have felt lonely at some point’. Although this is quite a high percentage and often it looks as though everyone else is sorted with loving family and friends and hectic social lives, so many of us actually struggle with this issue. And I have to admit that I’m one of the people struggling.

There are a number of causes and triggers to my loneliness and I also choose to fight loneliness in a number of ways. The feature in Glamour UK was useful as it consisted of contributions from readers as to how they coped with the causes of their loneliness.

Causes/triggers of my loneliness

The first of the main causes of my loneliness is being disabled and having mobility problems. I live with a form of arthritis known as Ankylosing Spondylitis which affects a number of my joints and bones, especially my spine and my knees. This causes a lot of pain, I struggle to travel far and rely on crutches to help me get around. Because of this even getting to the nearest bus stop to my place left me in agony so I am mainly a recluse, reliant on other people to visit me or pick me up. This is extremely frustrating, especially at my age (29) when most of my friends are out socialising or partying and I can’t even make it to the local corner shop. I cover some of the issues I face in the post: https://brokenglassshimmers.wordpress.com/2014/04/14/juggling-posting-with-ill-health/

The second cause is having a mental health problem and the stigma that is attached. Aside from the mobility problems that result from my physical disability, my mental illness only adds to the isolation and loneliness as I have a habit of pushing people away or hiding from the world when I’m struggling. Also I have a habit of thinking very negatively and few people are willing to stick around when I’m like that. I cover my struggles with posting with both physical and mental health problems in the post: https://brokenglassshimmers.wordpress.com/2014/10/09/reasonsexcuses-for-my-lack-of-posts/ .

Another difficulty that I face that leads to a great deal of loneliness is having a loved one in prison. In the post https://brokenglassshimmers.wordpress.com/2014/01/27/life-spent-loving-someone-behind-bars/ I explain in more detail how having a loved one in prison affects me in so many ways, including the loneliness I feel as a result. In my last post: https://brokenglassshimmers.wordpress.com/2014/12/19/absent-loved-ones-this-christmas/ I explain how living with a loved one in prison is more common than we think, especially for the 200,000 children who have a loved one in prison at Christmas. The main thing is again, the isolation. For many people, they take for granted that their partner is there for them when they need them but I have to wait for a phone call or a visit and as my partner is so far away and my mobility problems and pain levels impact on me so greatly, a face-to-face visit is incredibly difficult to arrange. Not only that, I tend to bottle up my feelings quite often instead of sharing everything with my partner, because I don’t want to cause him worry when he is quite powerless to help.

Another cause of loneliness that is also, I expect, quite common in people my age, are friends becoming acquaintances. As most people my age and younger get married, have families, move away or have challenging careers, their priorities shift. Whereas in the past they may have had time and patience for my dramas, now they have more pressing needs. It’s hard to let go when it’s once someone you were so close with, when there’s such a strong shared history. More and more often though, I’m beginning to see how holding onto these newly acquired acquaintances is more likely to cause loneliness and pain than completely severing all ties. Seeing that you’ve been replaced or just aren’t thought of in the same way, can be hard to accept and the two main ways of dealing with those feelings, internalising or confrontation are rarely very successful. You find yourself longing for what was instead of accepting what is.

Another thing many of us are guilty of that contributes to our sense of loneliness is comparing ourselves to people on social media sites. On social media very few, if any reveal their complete true selves so while we find ourselves envying someone who has a ‘perfect’ lifestyle or ‘dream’ career, it is easy to forget that we are often looking at things through rose tinted glasses. It does nothing for my self-esteem and confidence when I judge myself against the achievements of others as, whatever I do, I will usually end up falling short.

Over the years I have moved around quite a bit and living in a new area usually adds to feelings of loneliness. This feeling is increased when you have to tolerate nuisance neighbours or less than perfect home decor. I spend most of my time at home so the way I feel about where I live impacts a great deal on me personally. Our home is meant to be our refuge but it doesn’t always work out that way. That doesn’t mean that I’m not grateful to have a roof over my head, it just means that I have a long way to go before I see the place I live as my home.

Strategies for dealing with loneliness

One of the things that helps me to tackle loneliness the most is having a carer. She has been working with me for some time now and although it is a challenge to afford the help, I wouldn’t have got this far without it. One of the ways she helps me with loneliness is to get me out of the house but she has also become a good friend and provides lots of encouragement and a listening ear as well as helping in many practical ways too.

Another strategy that is of great importance for me is to keep in touch with my partner and close friends on a regular basis. This could be via his daily phone calls, the email a prisoner service or writing a letter or card. For my friends I’m quite reliant on Whatsapp as many are so busy that they rarely have time to talk. We do try to arrange meet-ups in person as often as possible although I am still struggling to become as reliable as I would like to be.

What also helps is to recognise that you ‘can’t please all of the people all of the time’ and that some people are only meant to be in your life ‘for a season’. It’s rare for me to want to let go of the people in my life but sometimes instead of wasting time fighting for what is lost we should open our eyes to what remains and our hearts for what is yet to come.

Something that has made a huge difference to my life is beginning to blog about my experiences and joining blogging communities. I have received so much support and encouragement already from other readers and bloggers that it really helps me to feel part of something and less alone. The post https://brokenglassshimmers.wordpress.com/2014/04/10/how-i-cope-on-a-daily-basis-inspiration-that-keeps-me-focussed/ explains a bit more about why I blog and how I feel to be part of the blogging community.

Another thing I try to do is as well as following people on social media who I can look up to and admire for their successes, I also try to have an equal balance by following people who I can relate to. It especially helps me to hear about other people facing similar issues and struggles, and learning from them how best to cope, without feeling like it’s impossible to measure up. I learn from people at all stages of the recovery journey, especially those who remember what it’s like to be in the bleakest of places and who instead of pretending they know it all, admit where they have gone wrong as well as what helps them to get it right.

I think that the important thing about loneliness is remembering that almost half of us will face it at one time or another and that we really aren’t alone with feeling lonely. Being aware of triggers and issues that contribute to loneliness is important because once we know the causes we can begin to figure out how to find the solutions, although often it will be a case of trial and error.

Do you find loneliness a struggle? Or have you found successful ways of dealing with loneliness? What works for you? Feel free to comment below, on Twitter @spursbythebeach or email brokenglassshimmers@hotmail.co.uk .