Today my best friend turned 30. I feel ashamed that I have done so little to celebrate it with her, and that it’s also left me with very self-centred thoughts about what turning 30 will be like for me, when life feels like it’s on hold due to mental illness and physical disability.
There is so much that I thought I would have achieved by the time I hit 30: Having a family, a career, an active social life. It feels like none of that will never happen. I think instead of focussing on all of the things that won’t happen, I need to focus on the things that could happen. Perhaps they will be smaller goals and achievements than I once would have set for myself (I’m sure even some of them may still prove impossible) but I really believe that it’s worth a try as I’m about ready to give up unless I give my mind something positive and new to focus on.
1. Write a collection of short stories based on some of my life experiences. Do my best to submit them to short story competitions and publishers, to see if I can work towards making my writing dreams come true.
It has been my dream for as long as I can remember to be an author and I really enjoy writing stories, I just haven’t put as much time into it as I should have. I would love to reach 30 and be well on my way to becoming a published author.
2. Build up this blog. It has been a real lifeline for me and I hope in time that it will become a lifeline for others. I would love to use it to challenge stigma and raise awareness of the issues that I, and many others face.
That means making the time to research and post every day. It will be a challenge, especially with my creative writing goal but it’s one that I would be very excited to achieve.
3. Start facing up to my financial difficulties. Speak to someone about managing my debts and apply for all the benefits that I am entitled to because of my disabilities.
This is quite an urgent problem and one I will be discussing with my new care manager when I meet her tomorrow.
4. Start living to a budget. Cut down on reckless spending and become more responsible.
Again, hopefully this is something I can work on with my new care manager as well as looking in therapy at the reasons behind my spending, as I’m pretty sure that many of the reasons are emotional ones.
5. Become less isolated. Work out ways to meet new people/make new friends including therapy groups, mental health day centres and possibly some short courses at my local university.
I’ve been putting off doing this for some time now, especially as I’ve been having to deal with my old enemy, panic attacks, and being around strangers often triggers this. I would like to do something though especially as I feel so alone right now. Another thing I’m considering doing is restarting the weekly mental health Twitter chats that I used to host.
6. Decide whether I want to go back to uni again. I have tried and failed on so many attempts, do I really want to put myself through this?
Last year’s attempt went so badly that it’s sort of scared me off but I’m aware that establishing a career as a writer will be a lot harder without the relevant training.
7. Find a GP who has empathy for how much pain I am in and is proactive about fighting to help me to get the treatment that I need.
I am planning on signing up with a new GP this week as I’ve just moved house. I’m very nervous about finding the right GP though.
8. Try to avoid returning to the psych ward as an inpatient and ideally get discharged from the hospital asap.
I have another ward round to attend on Monday when I will probably get discharged. Maintaining life on the outside though, is the real challenge.
9. Persist with trying to help my partner to get a move to a closer prison as while he is in the current one visiting is pretty impossible for me which is extremely upsetting for us both
It’s so stressful and painful travelling such a long distance for a two hour visit. I just want a chance to see him on a more regular basis.
10. Write to the Home Secretary about my partner’s D category situation and campaign to get him returned to at least open conditions.
My partner has been left in limbo for long enough. Yes he has messed up but he has served the time he was set and now just needs to be given a chance, even if that means supervision, he just wants a chance.
11. Work with my carer and new team from the Community Mental Health services to improve my chances of reaching a better standard of mental wellness.
I should be getting a new CPN (who I will be meeting tomorrow) as well as input from a psychologist. I know how lucky I am to have been given this input and had to fight to achieve it but now the important thing is that I make the most of it as the help could be life-changing and I really need it to be.
12. Share what works for me on this blog so that hopefully I am able to help others.
I really want to help others who are facing the same obstacles as I am, I hope this blog can become a place of encouragement and understanding.
13.Get married. My partner is my first and hopefully, my last love. Neither of us are perfect but I can’t imagine my life without him in it and would love to make that official as soon as possible.
There is a lot to arrange and I know it won’t be easy. A lot of people want me to wait but I love him and our relationship is one of the things that helps me to stay strong.
14. Visit my family. We’ve had a challenging time over recent years and they still struggle to understand me, but I would like to build bridges with them and I’d love to spend some time with my newborn niece.
It will probably be an emotional time full of mixed feelings but it is something that I really need to do asap.
15. Spend more time with old friends. I miss them and no-one understands me better than they do so I need to make more time for them.
This may mean working out a way I can travel more easily or finally making a decision about a permanent move. Either way, my true friends are worth it and I need to give them more focus than I have been.
16. Make a scrapbook of dreams and ambitions for the next 10 years and set about focussing on how to achieve my dreams.
I love scrapbooking and it was a huge help while I was in hospital. I feel like it could be an excellent way for me to focus on my future in a creative manner.
17. Set myself realistic goals, especially to start with, so that I don’t give up or burn out.
This could be by starting with 5-10 minutes a day of writing time or a chapter of a book/ a single short story a night.
18. Travel somewhere I’ve never been before. Or somewhere I’ve been long ago that I liked.
A few possibilities could mean finally getting a passport and visiting my best friend in Sweden or fulfilling my dreams of going to Paris or New York. Alternatively I could start smaller with a weekend break somewhere like Cardiff.
19. If I reach the right level of wellness, apply for the BBC trainee scheme aimed at disabled people.
It has been my dream for years to try for this but I haven’t yet reached the level of wellness that I’d like to be at to make this happen. Fatigue and pain are huge obstacles and I’m hoping that in time I can work out ways to overcome them.
20. Make a decision about whether I should remain in Wales or move back to London. Consider all factors such as finances, social support and health care. Once I’ve made a decision, try to do things to help myself stick to it. Until I make a decision, try not to put my life on hold.
At the moment I’m getting a good standard of mental health care here, but was receiving more physical care and had better medication options in London. Finances play a huge factor so a lot will have to remain to be seen.
21. Persist with my request for a better standard of care for my Ankylosing spondylitis and mental illness, refuse to be fobbed off or made to feel guilty for asking for what I need.
I need to speak to the advocacy service about whether there is any way that I can get more care and support for my physical needs. I also need to make sure that I research thoroughly all the options that are available to me, including by contacting organisations such as National Ankylosing Spondylitis Society (NASS).
22. Make a decision about whether or not to get a cat.
It’s a big responsibility and caring for it may prove a huge strain but it could be a challenge for me to learn to adapt better to.
23. Try to stick to a routine a bit more so that I over-do it less and get better at balancing activity with rest.
I tend to overdo it then crash for days afterwards. I need to get better at balancing out my energy levels by combining any activity with periods of rest.
24. Look into ways I can improve my opportunities to become a freelance writer/journalist and try my best to make it happen.
Read up on ways to break into the industry and spend more time and energy getting my blog posts to a standard that I am pleased with and hope that that speaks to future bosses.
25. Have a relaxing holiday, ideally somewhere I can focus on my writing.
I’ve heard of writing holidays and this sounds like something that is right up my street and definitely something that I should research in the very near future.
26. Make more of an effort to go to literary events both here in Wales and in London and elsewhere. My dream is to go to the Hay festival of literature. If I can’t make this year’s event I should definitely make sure I attend it next year.
Research and budget for whether a weekend in Hay on Wye would be possible as it would be a dream come true to attend it.
27. Set aside time every day for writing. Everything from blog writing, journalism, creative writing exercises, drafting stories.
It would probably also help to set aside a specific place for me to write, perhaps investigate some sort of laptop desk and somewhere to organise my writing research.
28. Set aside time every day for reading – blogs, newspapers and magazines, poetry, books, writing tips etc. Make notes on what I learn.
Reading used to provide such escapism for me but now I need to start reading in a more educated way, learning from those who have gone before me.
29. Try to have more of a distinct online presence. I want to spend more time focussing on my unique qualities instead of the things that have been holding me back.
I need to develop my own clear identity and work at getting that across to people, trying to break the mould instead of fitting into it.
30. Try to make time just to relax, unwind and have fun!!
Pamper sessions, magazines and trashy tv. Anything that helps me to switch off and stops me overthinking.
Anyway enough about my 30 things before I reach 30. What would you like to achieve before your next big birthday? Answer in the comments section below or on Twitter @spursbythebeach.
I haven’t posted on a regular basis in sometime so I really do appreciate the fact that I have some very loyal, patient readers left. It really has meant so much to know that in my darkest hours, you hadn’t given up on me. That became one of the things that got me fighting again.
It’s been a challenging week so I thought that I’d share with you some of what I’m facing right now. I do this mainly because I wanted to feel less alone and also because I wanted to reach out to others facing issues like these.
If you’d like to continue the conversation after you’ve read this post, you can add a comment or, as I’m always on Twitter, you could add me on @spursbythebeach . I look forward to hearing what you think.
I’ve been refused a care assessment from social services physical disabilities team.
Based on two Occupational Therapy assessments that took place while I was on the psych ward, and, I had been told previously, were being ignored.
Apparently I was refused a care assessment because, firstly, I ‘need to remain as mobile as possible’ despite the fact that I am on crutches and high doses of pain meds due to the agonising pain I am in, on a near-constant basis in my back and knees.
Secondly, I ‘didn’t ask for help’ that is because help was never offered to me and most of the time I was too embarrassed/proud/scared to ask as a 29 year old woman. I think this is probably the same at any age.
Thirdly, the borough in London that I spent the summer in, arranged an assessment with a social worker who, after investigating my medical evidence and really listening to what I had to say about my care needs, had daily carers put in place within the week. Why then if my physical health has worsened since then, is the same not being done in Wales?
I actually had a chance to confront one of the OT’s who made this judgement today and he just said we will have a ‘longer chat’ when he drops some equipment off to the house next week and mentioned that I could speak to advocacy about appealing the decision and that’s now top of my list to do. I just think that receiving the right care shouldn’t be a postcode lottery.
Another thing on my mind is my PIP assessment fast approaching. It’s a real worry as at the moment I am getting myself into masses of debt while my DLA has been stopped since I’ve been in hospital, as I’ve had to pay for a carer privately with no help from social services at all so far. This along with still waiting for my new care manager to visit, is causing me a great deal of worry and stress.
I know I have a lot to lose with this PIP assessment so I had a good chat with the two amazing people who run the NASS helpline and became a member. I also rang my rheumatologist and he has brought forward an appointment that was due on April 1st to next Wednesday. I’m just really desperate for him to do something to help me and find out exactly what is going on wiith my body.
I am still on my first week of leave from hospital and I have yet to be officially discharged although hopefully I will be as of Monday next week.
This has probably been the most challenging week of my life.
I got out of hospital and really hoped that things could go back to the way they were before with my friends. In most cases there is too much history there now, I’ve been too much of a let-down. As a result I feel lost. Either they don’t believe that I will ever fully recover (perhaps I won’t) or I’ve put them through too much during the past few months and they can no longer get past it.
Some people have stuck by me, the main ones being my carer, my best friend who lives in Sweden and my sister, who I’m beginning to build bridges with.
There are a couple of others who are feeling worried since my recent issues with paranoia, which is a vicious circle, as this was probably brought on by the stress brought on by loneliness and isolation.
Leaving a psych ward can be one of the loneliest times that you will ever face. You go from being around lots of people – staff and patients – 24 hours a day, to all of a sudden spending long periods of time by yourself.
I’ve decided to invest in a small TV but I’m just hoping that it doesn’t distract me too much from my blogging. I really feel like the only place that I can feel safe to say what’s really on my mind, and to generally be understood, is this blog.
Aside from the loneliness of leaving hospital, I’ve had to try to start again in a flat that I’ve hardly lived in which is still very chaotic as I need to finish unpacking, get into some kind of routine and start doing the things that I love again like reading and blogging.
I’ve just upgraded the blog and I’m quite pleased already. I’m always open to feedback and suggestions and would appreciate any constructive criticism anyone could offer me.
I want to start moving forward and looking to the future I’m just not sure how to go about it. I really want this blog to become a more positive place but most of all it has to be an honest place which means that I may not achieve positivity all the time.
I’ve spent some time recently considering how I want to move forwards with the blog and this year I want to really fight to raise more awareness, lessen feelings of isolation, and offer an alternative to mental health stigma and ignorance. I’m hoping that this blog can become a place where people feel they will be understood, and that raises issues that concern both myself and the readers of this blog, so that more people will know of the struggles faced by those with mental illness and/or physical disability, exactly how hard we have to fight.
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.
Well I’ve skipped a task again as I’d already kind of answered the last one, plus this task applied more two days ago when I first wrote it out in rough. Sorry for my delay in posting, my fatigue has been absolutely awful.
Make a list of things that you feel upset about right now. Write down as many as you can think of until you can’t think of anymore. Then choose the top 5:
Not being able to do everything that I want to do for myself:
From carrying myself a cup of tea (at home I have a hatch so don’t have to rely on the kindness of others) , to struggling with grooming, shopping and isolation because I struggle to get to places. Even at home, the local bus stop is minutes away from me but too far for me to get to without severe pain so I remain reliant on taxis or isolated in my own home.
Being on a psychiatric ward
In myself, I feel that this proves that I am weak, that I have given up, lost the fight. The atmosphere is tense at best, there is a lot of paranoia, including from me, which makes it an extremely difficult place to be. On top of that, it’s difficult to unwind, you can’t usually watch TV because of the constant background noise, even reading in your own room is a challenge. This is especially the case because if you do start spending a lot of time in your room then people assume you either have a problem with them or are being stuck-up. On the other hand, if you do come out you have to deal with everyone else’s problems and needs, as well as your own.
I’m worried about whether I’ll ever get to see my partner again.
It’s been 6 months and I miss him so much [especially as I’m typing this while we’re apart on Valentine’s day] . It’s hard because we get to talk so little, writing to him has been hard as my fatigue has been so bad and visits are impossible while I’m a psychiatric inpatient and my money has been cut as a result. Plus the thought of the journey then being trapped in a visiting room with loads of strangers, I just don’t know if I could do it. That thought makes me feel so guilty because I think I should be strong enough to do it for him. I miss him so much and I feel like a complete failure.
Waiting for the result of my hospital professionals’ meeting.
My anxiety about this is overwhelming and I am so convinced after two no’s from my previous assessments that it will be another no from them. If that happens my fear is that I’ll be stuck on a psychiatric ward long-term and I don’t think I could cope with that. My head is such a mess and I don’t see how I could cope alone in my flat without a decent level of support. The option of staying here long-term or being home without help, makes me want to cry.
My poor money-management.
I’m in debt, I’m trying to pay for my carer again because I couldn’t cope without her. I’m struggling to pay for the costs of my disability without Disability Living Allowance. The bills are mounting up and getting ignored, I’m getting chased for past debts and the whole thing is just making me feel ill.
My anxiety is causing me anxiety.
I’m either off my food or binge eating, I’m feeling sick and I just feel like crying all the time. I haven’t had panic attacks this bad since I was 19 (I’m 29 now). I just can’t cope. I can’t handle crowds (even small ones), I can’t handle being alone. It feels like life is impossible.
My paranoia is making me feel so depressed, I’m convinced that the whole world is plotting against me.
I don’t trust most people, I’m even convinced that my partner, who I adore, will get sick of me and leave me. All of the emotional abuse from my childhood is coming back to haunt me. My friends aren’t trusted to really care and I don’t even trust the food on the ward so I’m living on snacks. I’m terrified about what is happening to me.
Being many miles away from my family and friends.
I keep beating myself up for not working things out and managing to stay in London. I feel like I was happier and safer there. I wasn’t cured but I had more support and distraction, I was loved. My partner isn’t far from London and my entire family are over there, including my newborn niece. I feel like I’ve lost everything.
Negative comparison to others
I’m constantly beating myself up for not being a pro blogger by now (a year), a top published author, having the perfect figure and having finally got that Phd I’ve always dreamed of getting (when I didn’t even finish my degree). I compare myself to friends and family who have successful marriages with kids, and I compare myself to others who have talent, dream jobs or travelling opportunities.
Everyone is always on at me to be kinder to myself but I feel like to do that, I should be in a better place in my life rather than unemployed, stuck on a psychiatric ward.
Picking the top 5 things that upset me is really difficult as all of the various things merge into one. If I had to pick, it would probably be:
1.Worry over my partner
2.Frustration over not being able to look after myself properly (physically and financially.
3. My CMHt assessment
4. My anxiety
5. My negative comparison to others.
Day 5’s task, is for each of the 5 things you identified (in the last task), list 10 things you can do to gain control of the situation then pick the top 3 things from each list.
As I want to include explanations with each possible solution before I make my choice I have decided to split each problem into a post on its own so there will be 5 posts linked to this one then later I will hopefully do a follow-up post/s letting you know how I got on with my solutions.
How would you deal with these problems? Are you struggling with similar difficulties? What are your ways of coping? You can comment below or Tweet me @spursbythebeach . I really do look forward to hearing from you.