Tag Archive | rheumatologist

Day 2 Life as a mental health service user – week special

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.

How I want my life to feel

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 .

What’s on my mind…

I haven’t posted on a regular basis in sometime so I really do appreciate the fact that I have some very loyal, patient readers left. It really has meant so much to know that in my darkest hours, you hadn’t given up on me. That became one of the things that got me fighting again.

It’s been a challenging week so I thought that I’d share with you some of what I’m facing right now. I do this mainly because I wanted to feel less alone and also because I wanted to reach out to others facing issues like these.

If you’d like to continue the conversation after you’ve read this post, you can add a comment or, as I’m always on Twitter, you could add me on @spursbythebeach . I look forward to hearing what you think.

I’ve been refused a care assessment from social services physical disabilities team.

Based on two Occupational Therapy assessments that took place while I was on the psych ward, and, I had been told previously, were being ignored.

Apparently I was refused a care assessment because, firstly, I ‘need to remain as mobile as possible’ despite the fact that I am on crutches and high doses of pain meds  due to the agonising pain I am in, on a near-constant basis in my back and knees.
Secondly, I ‘didn’t ask for help’ that is because help was never offered to me and most of the time I was too embarrassed/proud/scared to ask as a 29 year old woman. I think this is probably the same at any age.
Thirdly, the borough in London that I spent the summer in, arranged an assessment with a social worker who, after investigating my medical evidence and really listening to what I had to say about my care needs, had daily carers put in place within the week. Why then if my physical health has worsened since then, is the same not being done in Wales?

I actually had a chance to confront one of the OT’s who made this judgement today and he just said we will have a ‘longer chat’ when he drops some equipment off to the house next week and mentioned that I could speak to advocacy about appealing the decision and that’s now top of my list to do. I just think that receiving the right care shouldn’t be a postcode lottery.

Another thing on my mind is my PIP assessment fast approaching. It’s a real worry as at the moment I am getting myself into masses of debt while my DLA has been stopped since I’ve been in hospital, as I’ve had to pay for a carer privately with no help from social services at all so far. This along with still waiting for my new care manager to visit, is causing me a great deal of worry and stress.

I know I have a lot to lose with this PIP assessment so I had a good chat with the two amazing people who run the NASS helpline and became a member. I also rang my rheumatologist and he has brought forward an appointment that was due on April 1st to next Wednesday. I’m just really desperate for him to do something to help me and find out exactly what is going on wiith my body.

I am still on my first week of leave from hospital and I have yet to be officially discharged although hopefully I will be as of Monday next week.

This has probably been the most challenging week of my life.

I got out of hospital and really hoped that things could go back to the way they were before with my friends. In most cases there is too much history there now, I’ve been too much of a let-down. As a result I feel lost. Either they don’t believe that I will ever fully recover (perhaps I won’t) or I’ve put them through too much during the past few months and they can no longer get past it.

Some people have stuck by me, the main ones being my carer, my best friend who lives in Sweden and my sister, who I’m beginning to build bridges with.

There are a couple of others who are feeling worried since my recent issues with paranoia, which is a vicious circle, as this was probably brought on by the stress brought on by loneliness and isolation.

Leaving a psych ward can be one of the loneliest times that you will ever face. You go from being around lots of people – staff and patients – 24 hours a day, to all of a sudden spending long periods of time by yourself.

I’ve decided to invest in a small TV but I’m just hoping that it doesn’t distract me too much from my blogging. I really feel like the only place that I can feel safe to say what’s really on my mind, and to generally be understood, is this blog.

Aside from the loneliness of leaving hospital, I’ve had to try to start again in a flat that I’ve hardly lived in which is still very chaotic as I need to finish unpacking, get into some kind of routine and start doing the things that I love again like reading and blogging.

I’ve just upgraded the blog and I’m quite pleased already. I’m always open to feedback and suggestions and would appreciate any constructive criticism anyone could offer me.

I want to start moving forward and looking to the future I’m just not sure how to go about it. I really want this blog to become a more positive place but most of all it has to be an honest place which means that I may not achieve positivity all the time.

I’ve spent some time recently considering how I want to move forwards with the blog and this year I want to really fight to raise more awareness, lessen feelings of isolation, and offer an alternative to mental health stigma and ignorance. I’m hoping that this blog can become a place where people feel they will be understood, and that raises issues that concern both myself and the readers of this blog, so that more people will know of the struggles faced by those with mental illness and/or physical disability, exactly how hard we have to fight.

Journalling for self-expression day 5 part 2

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

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

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

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

The things I can’t change are:

-Ignorant attitudes

-The fact that I have disabilities

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

The things I can change are:

-How informed those around me are about my condition.

-The people I choose to spend my time with.

2. Fight back for better pain management.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mental health recovery idea: Journalling for self-expression day 1

One recovery strategy that has aided me in the past to improve my mental health is Journalling for self-expression. My task, for at least the next 32 days is to follow the guidance of montrealtherapy.com , Journalling for self-expression tasks .

Each day I will attempt to complete, and post, my target for the day. Others are welcome to join me in this . If you do , post your links or write your thoughts in the comments section below.

This task stemmed from courses I attended at South-west London ‘s recovery college. These were aimed at Journalling for self-expression and telling your story, both of which helped me to open up better, which probably led to me writing this blog.

24

The first task is to write down what happened that day and how you felt about it (my entry is actually about Wednesday, although I will try to stay more up-to-date in future). I wrote as much as I could remember about a 24 hour timeframe .

Wednesday 

I think I woke up pretty early on Wednesday . After a cup of tea, I did some preparation for a blog post but mainly ended up chatting to other people on the ward. The downside of being a blogger in a psychiatric hospital, is that it’s so easy to get involved in other people’s problems/dramas, to procrastinate and never get anything done. To fight against that, and because my body seems to be most active at that time, I’ve been waking up early and trying to get my writing done in the fairly quiet hours on the ward.

9am came around before I knew it and my advocate had arrived. The wheels are in motion for me to have a meeting on the ward of all the professionals trying / trying not to be , involved in my care. This will include the hospital team, my physical disabilities  social worker, the CMHT (Community Mental Health Team) and the crisis team.

After that I managed, in a long, tedious, drawn-out, painful process, to get ready for the rest of the day ahead.

What a mess

After this, all I could think about was my partner and helping him out of the financial mess he’s got into in prison, despite the fact that I knew I’d be broke , with big bills due out and my DLA being stopped and overpaid due to the  28 day hospital admission rule not being explained very well by the ward on arrival.. Part of me was also worried about being moved to another ward for a period of time. I know that my mood is currently unstable and I didn’t want it destabilised further by constantly moving between wards.

The great escape 

It crossed my mind to do a runner from hospital and go to stay with my mum in London (as you can see, I don’t always think things through with complete clarity).  My mum refused to let me stay with her which distressed  me further so I got even more distressed. I told the nurse I then went to speak to, that if they wanted to move me wards , they would have to do it forcibly. The nurse was taken aback as I’m usually easygoing, and tried to reassure me, but I was having none of it.

I felt backed into a corner with the quicksand of a mixed episode /rapid cycling deepening and deepening. I was especially concerned about seeing a woman I’d previously been friends with.

After that I called my carer to ask if she could come in early for her last proper day, as I’ve had to let her go, at least temporarily . I was so on edge, I just felt like I was going stir-crazy in the hospital and it made me realise how bad I was going to feel, and how isolated I was going to be in future, without her.

A fixable mistake?

Just before my carer arrived, I had a phone call from my tenancy support worker about my rent arrears. It looks like there has been a mistake with the demand and it is being looked into. I still feel fretful about it but the tenancy support worker has insisted that she has not given up and will be looking into it.

My carer then arrived and we went to sort out the financial stuff that needed doing. This included a problem that had been causing me a great deal of worry.

I went for brunch after a bit of window shopping which ended up delaying me further so I had to rush the meal to get to my friends’ house as they had written me a supporting statement for my PIP assessment form.

What they really think

When I read the statements the ward manger, my carer and friends had written, it made me recognise a few things. Firstly, how much of a trigger my family are to me, secondly, how little independence I have, thirdly, how worried others are about me and lastly, how much I rely on help from other people. This caused me even more anxiety about losing my carer.

We went back to the flat as I was expecting the OT (Occupational Therapist) to visit, furniture to be delivered and to fill in the PIP assessment form with my carer. Nothing got done and I ended up taking diazepam that I had left over from an old prescription, something that, as a hospital inpatient, I am not allowed to do.

Dangerous spending

I needed to get out and followed my usual pattern of being mixed (depressed and on edge) and overspending money that I really don’t have. I went to Hobbycraft, which is always dangerous for me. In the end I bought some scrapbooking stuff, another book to attempt to organise my chaotic life in, in a pretty way.

I then spent more in M & S getting food treats for me and one of the other girls on the ward.

After that was my last drive back with my carer which made me feel really lost and hopeless.

An old friend

I got back and one of my friends had sent me her number via Facebook and we talked. It turned out that she was depressed and what I said about needing to seek help seemed to have little impact. I pleaded with her to contact the hospital and she said that she would. Not long afterwards I received a text message saying that she had taken a serious overdose. I met her recently in hospital and I don’t have her home address , so, out of my mind with worry, I had to inform the ward staff. They tried to reassure me that they’d called the police and it was ‘in hand’.

Deterioration

After this I deteriorated for most of the evening, I felt really depressed and on edge with the occasional glimmer of ok when friends were able to distract/comfort me, which would then leave me feeling guilty. It didn’t help that I had pain in the opposite arm to the one I have suspected nerve damage in.

What a start to the day

The next day started badly and I ended up experiencing a stabbing pain in my knee while I waited impatiently to see the doctor. The pain didn’t last long but it scared me because of the amount of pain meds I’m already on and how bad the pain was.

When I saw the doctors ( I ended up seeing two) , they said that they didn’t see any evidence of obvious inflammation, this made me feel like they didn’t believe me, although they disagreed. They just told me that the rheumatologist needs to see me. This would be all well and good if I’d been able to visit my flat sooner and received the letter from him in time to get to my appointment, which was due yesterday.

I felt so angry, frustrated and hopeless. This really led to me feeling suicidal. My mood drops so quickly lately that it’s frightening.

A bad combination

It was so hard, with a combination of disturbing memories, stress in the present and fear of the future. There was so much that I longed to do but my belief was so strong that I felt that I couldn’t do it anymore. I try my best to keep on keeping on but it is so hard at the moment. My blogs are kind of safety factors as there is so much that I want to do with them. I just need to believe that I can do it.

My overriding mood for that 24 hours was exhaustion/fatigue whilst being extremely on edge. I’m so scared about how I’m going to cope. I have so many things in my life that need to be sorted out, I just can’t focus on anything in particular and I worry that I will never be able to.

Fearing the future

I’m afraid of isolation, of my pain and mobility levels getting worse, and that despite my efforts, my mental health will continue to become more and more unstable, with mood swings that will lead to me spending more and more time in hospital .

I’m sorry that this has been such a long, overly negative post. I’m not even sure if I will post it.

The phone call

My partner called. He tried to convince me that I need to ask for help more often. He also told me to think about who my friends are, because although people aren’t mind readers and have their own problems, it’s obvious to everyone, especially those who know me, what my difficulties are.

Help?!

Is anyone else struggling to deal with having a physical disability and/or a mental illness? I feel so alone right now, it would help a lot to know if there are others like me and how they cope. Thanks for listening.

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