I’ve been really testing the patience of my care team this week. I have been struggling so much that I have done nothing but call helplines, crisis teams and my Community Mental Health care team. I have been struggling so much that at some points I couldn’t see any future for myself. My mind is so conflicted and I’m scared of what I’m capable of.
I have had phone call after phone call with my social worker this week, and she has calmly explained all the things that she is going to try to do to attempt to make my life better. Things like attending a mental health day centre with me to improve my confidence about being there, surrounded by new people, when that’s exactly what I need.
The Occupational Therapist asked me to fill in a form about which goals I wanted to focus on for my recovery. I struggled to choose just a few goals when there is so much of my life that is chaos, a complete mess.
My first goal was improved concentration. To do this I need to organise my surroundings as well as my mind. I have boxes everywhere from where I’ve only just had my stuff out of storage, as I was in hospital for the first few months I had moved into the flat.Someone kindly stored my possessions but they had to drop the last of it off recently and now I’m overwhelmed by boxes. My mind needs to be sorted out too. I’m in therapy with the CMHT psychologist, and I’m also seeing the rest of my care team but it’s so hard. I feel like I’m stuck in limbo waiting to get better, and I want to be able to start moving on with my life. Instead I’m stuck in this rut, and it feels like I’ll never get out of it.
My second goal was improved energy levels, physically and mentally, so that I can do what I set out to do. This means really campaigning for the right treatments so that I can have better pain management and less fatigue. I’m due to see the rheumatologist towards the end of June and I’ve finally decided that if I’m not satisfied with the treatment plan decided then I’m going to ask for a second opinion. I’m also temped to do the same with my psychiatrist care.
My third goal is to take better care of the flat. To do that I need to deal with my debts, budget better and apply to anyone who can help me to improve my situation. I’m sick of living in a shell of a flat. I want a home. I’ve moved around so much during the past decade. The problem is I don’t want to settle down here, I miss my family and friends in London but I can’t afford to get over there. I’m so depressed here in this city on my own, I just want to be surrounded by people who care. I know that might be wishful thinking where my family are concerned but I have some good friends there, and London will always be my home. I feel trapped.
I will discuss my other goals in later posts. At the moment I feel exhausted and sad and frustrated. I just want to be happy and it feels like, despite the efforts of my care team, that that will never happen.
Do you have any goals that you’re struggling to reach? What are your obstacles and how do you plan to overcome them? Get in touch in the comments section or on Twitter @spursbythebeach.
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Recently in Cognitive Analytical Therapy, my psychologist got me to fill out a sheet, which got me to consider how distorted my thinking and feeling is, as well as how I would actually like my life to feel.
1. I would like to be more open with people, especially my partner. I tend to bottle things up, especially as many, including my partner, struggle to understand my battle with physical and mental health problems.
People tend to be either completely ignorant, or so afraid of saying the wrong thing that they say nothing, or avoid me. My partner is one of the few who really worries about what these problems mean for me, he sees it as a real possibility that he could lose me as a result of these difficulties, especially my mental health, and so he fears it. He emotionally blackmails me, in an attempt to keep me safe, as though that’s the opposite of what I want. I love him and my friends dearly, but sometimes I wish people would ask more questions, instead of just making assumptions.
It’s also hard when friends make plans that don’t take into account my disabilities. It’s nice that they see me as ‘one of them’ , ‘normal’ , but the fact is that I am different and I would love it if more often that difference was embraced, rather than forgotten. Especially as it’s a difference that I have to live with every day of my life.
2. I would like to feel less angry and more forgiving about my past with my family. I hold onto so much from the past and it is time that I started to let go. To do this I need to continue engaging with therapy and writing.
What makes me angry? That my family hardly ever call, that I always have to call them, that even Skype is too much of an effort for my computer literate sister, that my niece will probably grow up not knowing me as her aunt, that I am still ,and probably always will be, the black sheep of the family, That even when I was in hospital there were hardly any phone calls, and none of them contacted, or visited the hospital. Finally without the disruption of my childhood home life, I may have been more successful in my education.
Looking at it differently though, their lack of support has made me more independent, and even if I did have an amazing education behind me, my disabilities would probably still get in the way of me achieving, and my family are not responsible for my disabilities.
3. I would like to feel happier. I want to finally win my long-running battle with depression. To do this I need to spend more of my days doing the things that make me happy as well as facing up to my worries.
The things that make me happy include blogging, creative writing, scrapbooking and being creative. The things that worry me are debts, health problems and my partner’s parole. As well as facing up to these problems I need to find time to have some fun.
4. I would like to feel less afraid of criticism, as I feel that this holds me back a great deal. To do this I need to continue to fight back by blogging, even if not everybody likes me. Instead of attempting to be a people pleaser, I need to focus on being honest, even if people don’t want to hear it.
5. I would like to feel more confident to follow my dreams, without constantly worrying about the barriers that I need to overcome to achieve them. To do this I need help to overcome these barriers, like my mobility problems, pain and fatigue. If, at my next appointment with the rheumatologist, he is still unwilling to do a great deal to help me, I will be finally requesting a second opinion.
6. As I mentioned before, I want to be less of a people pleaser, as this causes me to hideaway a great deal. I want to be less worried about how people will react if I just be myself. To do that I need to actually start being myself.
One example is my drinking, I usually only drink when I want to fit in, but I need to recognise that if I am going to show my real self, then masking it with booze every time I’m with friends, will not help me. On top of that, for health reasons, I shouldn’t be drinking anyway.
7. I would like to feel less anxious as I feel that this would help me to become more independent and less socially isolated.
A big part of me facing up to this is the possibility of me getting a mobility scooter or powered wheelchair through the Motability scheme. The thought of being more self-reliant makes me feel very nervous and excited. It would be great to get involved in community courses and activities and just to get some fresh air. Does anyone else have a Motability vehicle?
8. I would like to have better self-esteem, instead of constantly putting myself down. I’d like to start believing in myself. I could start this by praising myself for the things that I do well – however small, from getting more organised to posting on my blog.
9. I would like to feel more stable and in control of my mind. The only way I feel that I can do this is by persisting with medication and engaging with my care team. This includes attending and engaging with therapy sessions as well as my social worker and Community Psychiatric Nurse.
My dream to be confident, happy, organised and independent, seems so far away, but with the right steps I may be able to realise that dream sooner than I think.
Does anyone have any goals about how they would like to feel? What steps are you going to take to achieve them? Feel free to comment below or tweet @spursbythebeach .
Today I was working on my care plan with my Social Worker and my Community Psychiatric Nurse (CPN) and they asked me to think about what my signs are that I am about to relapse. At the time I struggled to think of any, but I’ve given it more thought and come up with 5 for me to be aware of.
I cry at anything and everything when I’m becoming depressed. Once I start crying, I’m in floods of tears and nothing can stop me. The slightest thing could set me off then that gets added to my insecurities, low self-esteem and bad memories, and it feels like I’ll never get away from the misery.
I have absolutely NO energy. My eyes are getting heavy this far into writing this post. All I want to do is sleep. I try to fight it but it never lasts and as a result my routine is all over the place and I find myself writing with my eyes closed.
3. Poor concentration
At this point in drafting the post I really could no longer focus so I went back to bed. Words were jumbled in my mind and I couldn’t work out where best to place them. It’s a struggle to both read and write, even picking up a magazine is a huge challenge. All I can think is, this isn’t me, this isn’t what I wanted my life to be like.
4.Loss of interest in things
Mainly people, which isn’t like me at all. It’s like I’m trying to distance myself from the pain that they would feel if I were to act on my suicidal thoughts. This can include isolating myself socially. I also stop doing the things that I love such as reading and writing, or I do less of them.
5. Difficulty making decisions
From what to wear in the morning, to what to eat, to what to buy, it’s so difficult to make a choice, because I’m convinced that I’ll make the wrong one, with my self-esteem so low.
People who know me, and maybe some who don’t, are probably noticing that I fit my relapse signatures at the moment. I’m nervous, but I’m trying to fight it by reaching out on here and social media to see if anyone feels the same as me or knows what to do.
Keep on fighting, then rest
I do kind of know what to do: keep busy, keep fighting, keep talking about how I feel, sleep when it’s safer to sleep, take my medication as prescribed and once I’ve reached the peak of fighting it, allow myself to rest.
Having a mental illness can be such a lonely and isolating experience. This can be due to self-inflicted loneliness such as isolating yourself from others/pushing people away or feeling that no-one understands what you’re going through, especially those who do not have a mental illness themselves (however hard they may try to understand).
Since the start of the year I’ve been isolating myself more and more, avoiding people, hiding away, cancelling meet-ups. I’ve also felt very alone in my struggle with mental illness. Even though I’m not the only person with a mental illness, it often feels like it.
I’m not sure what’s causing this behaviour, whether it’s depression, anxiety or both. It concerns me a great deal though.
I’m not a complete recluse. Thankfully I have a lovely PA, a kind social worker and a new tenancy support worker who help to get me out of the house. I also have an online messaging service on my phone called Whatsapp which helps me to keep in touch with friends and family when face-to-face meet-ups are difficult due to distance, health problems or lack of time. This helps me to still feel connected. As well as this I have this blog, my other blogs and social media such as Twitter and Instagram, all of which help me to feel less alone.
It doesn’t change the fact that I am isolated though. I am increasingly paranoid and increasingly frustrated and depressed.
I am due to see my psychiatrist on Tuesday to discuss whether or not my bloods are ok enough for me to start lithium. I’m absolutely desperate to return to some form of stability so that I can make decisions that need to be made, do things that I keep putting off and begin to work out who I really am and what I want.
I’m sick of struggling to get out of bed in the morning and I’m tired of being held back creatively when there are posts I want to create and books that I want to write as well as photos that I want to take. I mention photos because I was supposed to attend a photography session at a free arts centre not far from me. My PA was working that day and could have taken me but instead I freaked out about the fact that there would be people I didn’t know there and decided at the last minute not to go. Now the soonest I can go with someone will probably be the week after next. I just hope that I’m feeling strong enough to face it by then.
On the plus side I have started going to Slimming World meetings. I’m determined to lose 5 stone as soon as is healthily possible and I have started to make changes to my diet and exercise.
Exercise is one of the few things keeping me going at the moment. It seems to lift my mood a bit as well as giving me a sense of achievement. I just wish that I could do more. Again though, exercise is an isolated experience for me as I don’t go to classes or groups at the moment although I am thinking about starting Aquafit classes once I can get over my lack of confidence about other people seeing me in a swimming costume.
I’m trying my best to make sure that I leave the house every chance that I get, as long as I feel secure enough to. This is usually when I’m with my PA, social worker or tenancy support worker and usually involves shopping. I desperately need other activities in my life.
When I was reading on a regular basis I joined two book groups but now I’m struggling to even get through my magazines. The photography group sounds interesting as does some form of group exercise/physiotherapy. At the moment though just surviving day by day is the best that I can hope for.
Does anyone else struggle with loneliness or isolation? How do you cope with it? Please feel free to get in touch either on here, Twitter @spursbythebeach, Instagram @spursbythebeach or email firstname.lastname@example.org. I look forward to hearing your comments and suggestions.
I’ve been on Aripiprazole (Abilify) for about two years now this time around (I had been on it previously for a shorter period before the feelings of constant tiredness made me stop it).
Second time around, after a period of struggling to adhere to Depakote and my weight spiralling out of control, as well as a number of overdoses, I was desperate for something to work. I had returned to a previous psychiatrist, one who listened to my fears and, once I was reassured that Aripiprazole is weight neutral as well as concerned that my mood would deteriorate again, I was so willing to take a chance on side effects if it meant that I would be safe.
Two years later and I have adhered to it, my weight has fluctuated but that probably has more to do with a lack of exercise due to my physical disability than the medication, and for a while my mood was stable.
Now things have become more stressful and my mood swings have become harder to deal with. The last time I saw my psychiatrist he talked about starting me on lithium but I’m concerned about that too. I’m already on strong medication for my arthritis, I’m worried that another strong drug could be too much for my organs to handle but at the same time I believe that I need a strong drug. My mood is up and down constantly and the highs are worse than they have ever been while the lows become increasingly harder to deal with. I’m overspending, I’m generally isolating myself and avoiding people. I keep having big plans and assuming that I will be able to carry them out without any problems. I’ve begun obsessive list writing, I’ve spoken complete nonsense, I’m generally on edge and extremely stressed about anything and everything.
I spoke to my social worker twice yesterday. She said if I’m still the same on Thursday when she is due to come out to see me then she will bring the crisis team out with her to see what support they can offer me. My psychiatrist has also brought forward my appointment with him to this month. I’m terrified of ending up hospitalised or of messing up my medication and accidentally killing myself as sometimes I struggle to remember what I’ve taken and what I haven’t. I worry that I’m untreatable, that all of the ideas and aspirations that I have are just the illness and will never be realised. Most of the time though, I just don’t know what I want.
Past memories are coming back to haunt me and mess with my mind as I struggle to remain aware of what I’m doing and saying. I’ve been falling behind creatively as I struggle to write blog posts while my life is falling apart. Today, writing is a welcome distraction, tomorrow it could just be an unrealistic expectation.
I just want to lead a life where my creativity is no longer stifled by my mental illness. Where I can reach my full potential instead of being a recluse and a drop-out. I want to lead a life where I feel safe, where the future no longer terrifies me, where I have hope.
Is anyone else going through this? You stick to your treatment religiously only for it to stop working? How are you coping?
I started a life on and off benefits aged 17 after I was made homeless by my family. At first I lived in a subsidised hostel, but when I moved into my own (council) flat a month after my eighteenth birthday, I was left shocked by the existence of life on benefits. I was on about £40 a week income support as I regularly struggled and had to apply for crisis loans then had to pay them back out of the extra few quid on top of that that I would otherwise have received.
During my time on benefits, I remained determined that this would not be my future and it wasn’t. I finished college with the help of Educational Maintenance Allowance (EMA), I don’t know how teens in crisis survive without it. I also had some financial assistance from the college including a travel warrant. I lived quite a distance from the college and couldn’t have got there without it.
My life was a struggle. I lived on toast apart from my free lunches from the college. I was in constant fear of running out of toiletries etc and even now I have the habit of buying more than I actually need because I’m scared of having to live on the breadline.
That part of my life changed when I started university for the first time in 2004. For the next few years I studied and worked hard until eventually, around 2006, after dropping out of uni for a second time, I saw a psychiatrist (in fact a few psychiatrists) and was diagnosed with Bipolar disorder. Eventually due to my mood instability and a lack of understanding and support from my employer, I had to give up work and was again in the position of living on benefits. It wasn’t much of a life, more an existence. I rarely left my flat, lost nearly all of my friends, became withdrawn and angry.
It took a lot of support from the Community Mental Health team, tenancy support and my then boyfriend before in 2010 I was able to work for a matter of months before the Bipolar once again became too much to deal with. When I was high I took on too much work without being able to concentrate on any of it, then when depressed I became extremely overwhelmed and struggled to even get out of bed in the morning.
I signed back onto benefits and my health deteriorated further. In 2011 I tried to take my own life a number of times then almost overnight an ongoing problem with my knees worsened meaning that I could only get around on crutches. Eventually the pain spread to my back and after seeing a rheumatologist and having lots of tests I was finally diagnosed with Ankylosing Spondylitis, a severe form of arthritis that causes pain, fatigue and if effective treatment isn’t received soon enough, can cause the bones in the spine to fuse. It can also affect joints such as the knees.
It took nearly a year of seeing a rheumatologist before I was given a drug called Enbrel. Since being on this drug for a few weeks I have already noticed improvements in my levels of pain and it has left me beginning to hope about what this drug could mean for my future physically. My main issues now are my mental illness and my levels of fatigue (impacted by my physical and mental health).
Mentally, I’m a mess. My mood yo-yo’s on an hourly basis and I struggle with mania, paranoia and anxiety or depression and lethargy, mixed states, suicidal thoughts, the lot. I receive treatment from the CMHT including a social worker and PA. I’m also waiting for group therapy and tenancy support to start.
I receive disability benefits including ESA and DLA, so life isn’t as much of a struggle for me as it was when I first signed on to benefits but it is still traumatic. That constant fear that someone will declare you fit for work when you’re ill or that the cuts that are being put in place next year will impact me, leave me feeling like nothing is secure, nothing can be relied upon.
I’d love the security of a job but I know that I couldn’t cope with the inflexibility, the stress and pressure. I’d love to be a journalist but some days I can’t even speak to my friends, let alone strangers and I struggle to leave the house unaccompanied. I’m still on crutches too so with that and my record of mental illness causing an end to my employment, it is unlikely that anyone would want to employ me anyway.
I would love to write on a regular basis , which is why I set this blog up, but some days I can’t concentrate at all, or if I have great concentration due to a manic episode, I could be writing complete nonsense anyway.
As a result of my ill health I’ve lost friends, family avoid me and I have no social life. I’d love to be a normal twenty-something. At my age I should be in a position of responsibility, have a career, perhaps be thinking about starting a family. Instead if I am ever able to work again I will be extremely lucky to get a job on the bottom rung of the ladder, no matter what my age.
I’m not what some would call a ‘chav’. I have part of a university education behind me. I’m not lazy and I’m not greedy. I’m hardworking, determined and I love a challenge. The problem is that despite the best of my intentions, my enthusiasm doesn’t turn into anything reliable, concrete. Instead I am crushed under the pressure and fall apart.
I started this blog in the hope that one day I can be a freelance journalist but more importantly than that, that I can raise awareness of people like me who are affected by disabilities, physical and mental, who are unable to work and who have to rely on benefits that are threatened by the government cuts. I want people to realise that we are not an ‘underclass’ to be threatened by, but ‘normal’ people like them who just happen to have fallen on hard times. If it was you in my position, wouldn’t you expect some government support? How would you feel if people looked down on you as a result? How would claiming benefits make you feel as a person or how does it make you feel?
I am happy to continue this discussion on this blog as well as on Twitter @spursbythebeach. If you have something you want to say more privately then please feel free to email me on email@example.com and I will try to get back to you as soon as possible.
- The October update – my struggle with anxiety and mood swings October 25, 2015
- Safety in self-knowledge – part 3 October 25, 2015
- Safety in self-knowledge – part 2 October 24, 2015
- Safety in self-knowledge part 1 October 22, 2015
- Life after a crisis July 8, 2015
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This month on Brokenglassshimmers
- attitudes of others/stigma
- Bipolar disorder
- Blogging community
- care manager
- Community Mental Health Team
- Crisis Team
- day centre
- Depression/suicidal thoughts
- distorted thinking
- Home Treatment Team
- in control
- life as a service user
- Mental health
- Mental illness
- Negative thoughts
- Occupational therapist
- people pleaser
- physical disability
- postcode lottery
- psych ward
- psychiatric ward
- self harm
- Social media
- social worker
- socially isolated
- suicidal thoughts
- the mental health community