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.
The hardest thing…
One of the hardest things about having a mental illness is losing friends. I never really know whether to take it personally or whether it is as a result of my diagnosis and symptoms. All I do know is that as an impact of my conditions (Borderline personality disorder/possible Bipolar), I find it harder to make and maintain friendships than the average person seems to.
Firstly, I’m unpredictable. One minute I’m happy-go-lucky, impulsive and sociable, the next minute I’m isolating myself, paranoid and hostile. I can understand why people would struggle to have patience with that, but it hurts when people promise that they will stick by me then let me down for more ‘fun’ friends.
I was in a psychiatric hospital for about four months. The majority of ‘friends’ were either afraid or unwilling to visit me during that time, especially after the initial week or two. It hurt to watch other patients with their visitors, the lift it usually gave their mood, as my ‘friends’ distanced themselves, even when I was on day leave from hospital.
Perhaps they were worried about what sort of state they would find me in, how traumatic it would be for them to experience.
When it suits them
Then I got out of hospital and, apart from the occasional invite out, when it suits them to have me around -events they are going to anyway, etc, I haven’t heard from them.
Whenever I need their help and advice I’m either ignored, given a bunch of excuses and the knowledge that they have better things to do with their lives than deal with me.
I’m trying to move forward with life after hospital, but alone, it is so much harder. I have no-one to call and share with when good things happen, and no-one to turn to when I need a shoulder to cry on.
Without the support I get from readers of this blog and the Twitter community, I would probably have given up by now. So thank you, to my virtual friends.
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.
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.
Many years ago a friend of mine ended up in Bristol, lost, looking for the way to London (so you can guess how lost he was). The man who kindly stopped to offer him directions, on finding out his intended destination, responded: “I wouldn’t start from here if I were you!”
I recalled this story recently, on leaving hospital (I spent a few months on a psychiatric ward). It made me think about whether hospital is the right place to start from when working towards your recovery.
I don’t want to pretend that hospital is completely black and white, that it’s all good or all bad. There are positives and negatives to being admitted and I definitely found this:
Positive: Staff intervention
When staff intervention worked it could have a real impact on my recovery. Knowing that I was believed, that people cared and that they were seeking out the best course of action to provide me with long-term support, meant so much. Without the support of the hospital staff such as my ward psychiatrist, psychologist and the ward manager, I probably wouldn’t be about to meat my Community Mental Health Team Care manager. Having someone unbiased to talk to, well whose only bias was seeing me recover, really helped such a great deal too. An outsider’s input can help to put a lot of things into perspective.
Negative: Staff intervention
When staff intervention didn’t work it could really bring me down. Staff with a taste for the power they had, or those who were just having a bad day, probably didn’t realise how much damage they were doing with their negative attitudes/comments, but could undo a lot of the good work being done by the good staff. If, like me, you have had a lot of negativity in your life, the last place you need that to continue in, is hospital. Perhaps staff need to recognise how much their bad days can impact those who are in a vulnerable position. We’re all human, definitely not perfect, but for those who choose career roles that can have such an impact on the lives of vulnerable people, they need to think twice about whether that choice is a sustainable one.
Positive: Other patients
Sometimes there could be a great deal of support and camaraderie on the ward from other patients, a few of whom even become friends. It’s especially tempting to start leaning on other patients when your friends on the outside stop visiting and you want to feel less alone with this mental anguish. Speaking to others who have similar worries and experiences can really put your mind at rest and definitely make you feel less alone.
Negative: Other patients
When it didn’t work out with other patients, when you leant on someone else too much and they ended up harming themselves or distressing you with rejection, this could really provide a challenge to remaining focused on your recovery. Also when there was conflict on the ward, even a small conflict, it left a negative atmosphere for everyone and caused us all to feel uncomfortable.
Positive: Putting help in place
I was lucky that the ward I was in not only had an excellent psychologist but also had senior staff who were focused on making sure that you wouldn’t have to come back again. This meant that they generally really fought for me to get the outside help that I needed, which definitely proved to be an uphill struggle. They never gave up on me though.
Negative: Becoming institutionalised
By the time I left hospital, after the few months that I spent on the ward, I was beginning to see less of a life on the outside, less of a reason to fight and more of a need to stay, as I wondered if I would ever truly be ready to deal with everything life had to throw at me. Thankfully a few members of staff gave me a kick in the right direction, and I decided to brave it, but it hasn’t been an easy choice to make.
Positive: Keeping you safe
Hospital staff can’t watch every patient non-stop but they can ensure that if you are feeling at risk you have a far greater chance of remaining safe than you probably would be on the outside. This opportunity to remain safe increases the more you are honest and cooperative with those who are trying to take care of you.
Negative: Isolation from people on the outside
After a week or so of being in hospital, people, intentionally or not, start to drift away from you. They give up inviting you out because they know that you are on the ward and they stop calling because they are disturbed by what they hear when they do. It’s painful but going through something like this really shows you who you can really rely on. If you have a friend in hospital, cards, phone calls, visits mean so much. Knowing that they have people to come out to, who haven’t given up on you while you’ve given up on yourself, means so much. If one of your friends has been in hospital and you realise that you haven’t been there for them as much as you perhaps could have been, it’s never too late to start!
Positive: Less risk factors
With the focus on keeping you safe you become used to things like having your privacy invaded with, for example, bag searches, for your own protection. You still have a part to play in keeping yourself safe but it helps a lot to know that you are not the only one working towards this.
Negative: Lack of home comforts
You risk damage/loss to any valued possessions if you bring them with you so often you have to learn to do without. Added to this is the dodgy food and having to share toilets/bathrooms with people who may have quite poor levels of hygiene. There are times you will long to be at home, for the peace and quiet especially, but the grass is usually greener.
Negative: Getting used to the silence afterwards
Being in hospital can be one of the most challenging periods of your life but the biggest challenge is surviving life after hospital. The silence will eat at you and the lack of people to talk to/confide in, especially if you’ve lost contact with people on the outside. Being out can lead to extreme isolation and you will have to fight hard to beat that.
So as you can see, hospital can work but there are factors to bear in mind and, in my opinion, it should always be the last option for someone and you should go into it with the expectation that keeping you safe is the most important aspect to being hospitalised. This can come at a price though so choose carefully!!
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.