From next Sunday onwards, on Sundays, I’m going to be posting a recovery-focussed post. Today though, I thought I’d write an update post to highlight where I’m at:
- Because I need to express in words what’s going on and,
- Because you will begin to understand why I’m so recovery-focussed on future Sundays. (It’s not because I believe that I have all of the answers but, if I find any, I want to share them with others facing similar issues).
This last week and a half has been awful mood-wise. As those of you who have been reading this blog for a while will know, as well as a diagnosis of Borderline Personality Disorder, I’m also physically disabled (Ankylosing Spondylitis – a form of inflammatory arthritis).
I’m actually in the process of starting up a blog about my life with AS as I’d like Brokenglassshimmers to be about mental illness and mental health recovery, as well as the issues that those of us with mental illness face. There is a reason for me mentioning my AS in this post, as you will see shortly…
I had an appointment with the rheumatologist almost 2 weeks ago. Because of the level of physical pain and stiffness I was struggling with (which was, in turn, bringing me down mentally), he reluctantly, as he knew about my mental health diagnosis, prescribed steroids.
It took a lot of persuasion from me, and a promise that at the first sign of any problems, I would stop them. I felt confident as I’d previously had steroids around a year ago and, looking back with rose-tinted-specs, thought that I coped ok with them.
Instead they have caused me nothing but mental health problems. My anxiety and panic attacks are back with a vengeance, so whereas before I was hoping to wean myself off Diazepam, I’m back to taking the full, prescribed dose.
My sleeping is also all over the place, if I wake in the night I struggle to get back to sleep. I am back to having really severe mood swings, I am extremely over-sensitive and paranoid. Plus my social anxiety is back, so I’m literally shaking with fear about the thought of attending the creative writing group that I began before the steroids.
Why don’t I stop them? You may be thinking. I actually did, a week ago, and I’m still experiencing symptoms, although in total, I was only on them for a few days.
I veer from drained but unable to sleep, to buzzing with ideas. Internally I’m exhausted from the anxiety and lack of sleep and, to top it off, because I’m no longer on the steroids, there is nothing to stop the really bad flare-up that I’m having, of my AS.
So I’m worse than back where I started from. I feel lonely and isolated, but terrified of people. I go from wanting to hibernate to buzzing with ideas.
Sometimes I feel like a fraud for writing about mental health recovery when I haven’t ‘recovered’ myself, but the reason I do is because I’m so desperate for answers, a way to stop the torment that I’m in, and a flicker of hope that things can get better.
What do you think about recovery-focussed posts? Do you find them helpful? I can be contacted in the comments section below or on Twitter @spursbythebeach. Look forward to hearing from you!
At least a few times a week I have decided to challenge myself, by giving myself an alphabetical theme to blog on. Each theme will be related to living with mental illness/ physical disability. I am also going to do the same challenge on my FBL blog Lifelovesandlipgloss.wordpress.com , although often using different topics for the different blogs.
I chose to write about anger first, because it is something that I struggle with a great deal.
My experience of anger as a child, my parent’s violence and emotional abuse, taught me how much expressed anger can hurt others, so I tend to BOTTLE IT UP.
My anger is mainly triggered by memories from the past which leave me feeling POWERLESS and UNABLE TO ESCAPE, stress which also leaves me feeling BACKED INTO A CORNER as well as UNABLE TO COPE, and being unable to cope leads to a great deal of FRUSTRATION, which makes me want to EXPLODE.
Turning it inwards
Instead of expressing my anger and frustration in a healthy way, I turn it inwards and attack myself. At first it starts off as a mental attack. INSULTS, ABUSE, SELF-HATRED. The things my parents and the bullies at school used to say to me, I say to myself: Ugly, fat, useless, pathetic, unwanted, better off dead.
The negative self-talk can only go on for so long before the anger bubbles over, like I’m in some kind of pressure valve, and I end up wanting to act on the negative feelings I hold towards myself, by physically causing myself pain, also known as SELF-HARMING.
Searching for a new anger-management strategy
At the moment though, I’m desperate not to follow the old negative patterns. I feel STUCK, TRAPPED. I know that I will lose my partner if I end up self-harming or attempting suicide again, and, if I do, I am also likely to end up back on the PSYCH WARD.
I’m trying so hard to change things. Firstly, I try to FILL MY DAY so I don’t have too much time to dwell on things. I try to do things that I know will RELIEVE MY TENSION, from watching a favourite TV show, to colouring in or other creative-type stuff. Blogging also really helps. It helps me to EXPRESS MYSELF in a CONSTRUCTIVE way and to feel LESS ALONE, when I realise that others are struggling with similar issues.
Hopes for the future
My hopes for the future are that my feelings of anger will lessen and I will FEEL MORE IN CONTROL of my anger,that I will learn to express it in a healthy way, that doesn’t leave me with feelings of REGRET after yet another explosion.
Do you struggle with anger? What ways have you found to manage it? What helps you to cope better with it? Either comment below or Tweet me @spursbythebeach.
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 .
Fed up, what can I do to make it better?
For the past few days, I’ve been completely panicked that something is wrong with me, physically because of how exhausted I’ve been, sleeping constantly, especially during the day. I am awaiting blood test results and, like the drama queen I am, I even called the out of hours doctor. What I forgot is, I’ve been here before. These are all symptoms I’ve already experienced and likely will again. These are most likely symptoms of depression, anxiety and stress.
There is a depression checklist in a DBT (Dialectical Behaviour Therapy) book that I have that makes it even clearer. Here’s the checklist and my response:
Persistent low mood: I feel rock bottom. I feel alone, worthless and like I will never amount to anything.
Increased appetite/ Decreased appetite: I’m not eating regular meals but when I am eating, I do tend to binge.
Difficulties falling asleep: This sentence should continue with ‘At the right times’. I’m becoming nocturnal, when I want to sleep I cannot, and when I want to stay awake , my eyes start to become heavy.
Feeling empty: I really feel like this, especially since my failure at university last year. I had put so much of my energy into becoming a successful student and now I see myself as nothing/a nobody.
Social isolation: This is partly my fault and partly the fault of others. The main reason it’s my fault is that I left London and all my old friends there and came back to Swansea where my friends had moved on. Even if they haven’t and I’m just being paranoid, that’s what it feels like.
Problems with memory: I have no problem remembering the things that haunt me, but the mundane, everyday stuff, that I need to remember is becoming a lot more of a challenge.
Persistent anger: As you can probably already tell, this is mainly directed at myself. Why do I always get it so wrong?
Irritability: Again, this is mainly directed inwards, I am extremely frustrated with myself for not making university work out, for not being near the end of my first year. Who knows how different my life could have been?
Decrease in motivation: When I’m well/stable, I want to be a successful mental health and fashion, beauty, lifestyle blogger, that means raising awareness of what life is like with a mental illness and how you can help. I want to help form an online community that makes up for the community I’m missing out on in the real world. When I’m like this, I lack the motivation to do anything because I feel like I don’t have the ability to make things happen.
Feelings of hopelessness: I feel like this a lot lately. What’s the point of trying when I just mess up anyway? I know that’s an extremely negative attitude to have but I started this blog to be completely honest about how I feel and how I (hopefully) get through it.
Weight gain: As usual, when I’m depressed I eat rubbish, which leads to weight gain.
Waking early in the morning: I more likely haven’t gone to sleep yet from the night before.
Restlessness: When I’m awake I’m really edgy in my own company (Most of the time) and feel like I have to be keeping busy or sleeping.
Low self-esteem: My self-esteem is beyond low, I really feel like I am capable of nothing. I spend all my time comparing myself to others and how much more than me they can do.
Tearfulness: I cry at anything and everything, especially when I’m feeling overwhelmed, which is often.
Loss of interest in things: I usually would love to read and write creatively, but at the moment, I’ve completely lost interest.
Feelings of worthlessness: I feel like the world would be a better place without me.
Loss of enjoyment in activities: I’ve even considered stopping the blogs because I feel like I’ll never get to where I want to be with them.
Poor concentration: I either struggle to focus on a single thing or try to focus on a few things at the same time.
Thoughts of suicide: Yes my old enemy thoughts have started to come back to the forefront of my mind. I feel like everyone would be better off without me.
Waking frequently during the night: At the moment I’m awake most of the night. When I do fall asleep though, I do wake frequently.
Increased sleep: I’m currently sleeping on average between 16-20 hours a day.
Feelings of helplessness: I fear that there is nothing I can do to make things better.
Feeling guilty: I feel guilty for my negativity when I KNOW that there are others worse off than me.
Mental confusion/ Difficulty making decisions: I feel so out of it and confused most of the time, I can’t make my mind up what to do for the best from trivial to more serious things.
Inactivity: Much as I’m trying to keep busy, I’m struggling to do anything.
Lethargy: When I’m not sleeping I feel exhausted.
Dwelling on the past: As you can see from this and recent blog posts, I’ve been dwelling on the past quite a bit recently, especially my university failure and recent hospitalisation.
What can I do to make it better?
- Balance activity with rest.
- Attend my appointments with my care team and,
- Being honest.
I worry that this blog will become a negative place, that people will avoid it because it’s so depressing. All I want is to be honest.
How are you feeling? Are you struggling with any of the stuff on this list? How do you handle it? Either comment or Tweet @spursbythebeach.
Bottling things up
I’m so tired of bottling things up. Of putting up and shutting up. There is so much I want to say and the truth is I don’t know where to start, or whether or not it’s worth starting, when all it’s likely to do is finish off burning, the already burnt bridges.
I said in my last post how tired I was of one-way friendships, we agreed on Twitter that it was time I made new friends well perhaps that is true. If that’s the case though, why is it so hard to let go? Why am I reminded of the good times we shared and left wondering ‘what if?’.
I blame myself, for pressing the self-destruct button on my life and pushing away the people I cared about. Now they’re pushing me away and while I’m at this vulnerable point in my life, it really hurts.
Sometimes women in their twenties and thirties still behave like Mean Girls. There is still so much ignorance about mental illness and hospitalisation, even from those with mental illness themselves.
Then when I think to myself that at least, whatever I’ve lost, I’ve always got my partner, he starts to push me away, which leads me to feel extremely insecure. He may be in prison but usually it feels like he’s the only one I can count on. Since my financial problems though, things have changed. At first he was really supportive, a huge encouragement. Now though it feels like he has forgotten what we’ve both been fighting so hard to achieve.
I am becoming more and more reliant on Lorazepam and sleep as a way of getting through this awful period. As a matter of fact, I can hardly keep my eyes open now, so I’m off to hibernate for a little while. Hopefully I will make more sense when I return.
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.
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.