Journalling for self-expression day 2

Write a letter to a person you are angry with. Say everything you are feeling and wish you had the nerve to say.

Dear David Cameron,

Thank you for helping to make my life even more of a misery than it already was.

Postcode lottery

First of all, your cuts to social care services make getting the help I need, near impossible. You make getting help from physical disabilities teams as well as Community Mental Health Teams, almost impossible. It has become a complete postcode lottery.

When it works

In some places, having a mental illness, full stop, means that you can get the help you need, especially without having to become a psychiatric hospital inpatient.

On the two occasions I’ve returned briefly to London, I’ve found good preventative measures in place that are simply non-existent in Wales. Ideas like the south-west London recovery college, this runs courses on better management of your mental health condition, as well as more therapeutic classes such as how to tell your story and journalling for self-expression (see my previous post) https://brokenglassshimmers.wordpress.com/2015/02/01/mental-health-recovery-idea-journalling-for-self-expression-day/ .

In Islington they have come up with the fantastic idea of having crisis houses, which people in mental health crisis can move to for a couple of weeks, as an alternative to going to hospital.

Vicious cycle

The only issue with these crisis houses are that the buildings that house them are rarely disabled accessible, which in reality, with the increasing number of disabled people, the likelihood of them experiencing both physical and mental illness has increased, with the two types of disability aggravating each other in a vicious cycle.

Why not UK-wide?

These ideas, although far from perfect, should be learnt from and rolled out on a UK-wide scale, instead of it being the case that getting the right care is dependent on where you live.

Direct payments

Your tightening up of criteria for help from a once great idea, Direct payments, has made life even more challenging for those living with physical and/or mental health conditions. The only thing I am guilty of, is moving out of the area I live in for a couple of months, before returning. As a result of that, I permanently lost my help from the Community Mental Health Team (CMHT) , both care management and Direct Payments, as well as my independence.

A daily struggle

I struggled to pay for my carer from my DLA once I returned, as going without her would probably lead to suicide. Instead of me contributing half the cost of my care and social services meeting the other half, I have had to pay for all of it, as well as the other costs related to my disabilities. The struggle financially as well as mentally, resulted in me ending up in a psychiatric hospital as an inpatient.

Inpatient DLA rules

The really ‘well thought out’ rule of stopping DLA for hospital inpatients once they have been in hospital for 28 days, is another idea that makes no sense to me. Just because someone with a disability/illness is in hospital, doesn’t mean that they can stop having a disability, or stop the additional costs that are involved in having that disability.

I feel especially bad for people who have leased cars, mobility scooters or electric wheelchairs through the Motability scheme. As well as that, what happens to people, like me, informal psychiatric patients who have some remaining freedom, but who rely on a carer to help to keep that freedom a reality?

My carer was the only reason that, till now, I didn’t become institutionalised , and was the difference between me getting off the ward or being stuck here day in, day out. Now I have lost both Direct Payments and my carer as I cannot afford to keep my carer for the moment and I’ve ended up losing her to someone who can afford her.

Problems piling up

I am absolutely heartbroken. In hospital I have been threatened and scared, despite the efforts of some of the few kind, but underpaid and overstretched nurses, I feel afraid and alone, that I am an easy target, and that this could cost me my life.

You may wonder why that is? Well add financial pressure, to loss of mobility and independence, on top of physical disability, mental illness and isolation. With all of that piled on me, whilst being expected to survive on my own, is it any wonder that I struggle?

Friendship

My only friends are either completely lost as to understanding what I’m going through, or they themselves are in the mental health system and struggle to deal with my issues on top of their own. My carer was the only one who didn’t find me too much for her and now I’ve lost her. I’m so broke that I can’t even afford to visit my family, including my newborn niece.

Walk in my shoes

Just for a minute, take a walk in my shoes. Pain, fatigue, a constant desire to harm yourself, isolation, loss and an unstable mood. I feel powerless over my own life and what happens to me, which is a scary place to be. You have power over the lives of others as well as your own life. You have the power to change my life.

Practicalities

So next time you talk about the need to reduce mental health stigma, think of the practical things that you are able to put in place to do just that.

If

My mind returns to a few months ago, when I had a life, ambition, was closer to my loved ones, had a suitable place to live and was far less isolated. If I hadn’t been wrongly advised by DWP and majorly let down by your government, I might actually be in a better position to cope right now, instead of in a room on a psychiatric ward.

Whether or not I make it, as I have lost faith that anyone can, or will, be able to help me, I want you to really think about what you are doing. I want you to consider the destruction you are causing and the lives that are being lost as a result of your cost-saving measures. I’m sure even after you do that, you will return to your cosy life and your cosy family and forget all about us but I want you to spare at least one minute of your time, thinking about what you have done to us.

Juggling posting with ill health

Diagnosis:

I was diagnosed with Bipolar disorder 7 years ago and with BPD (Borderline Personality Disorder) in addition, 3 years ago. On top of that, I also have a diagnosis of Ankylosing Spondylitis (AS), a form of arthritis. I have attempted blogging in the past as I love to write but struggled to combine writing on a regular basis with ill health. A few months ago I set up this blog as I decided I didn’t want to give up on my dream of writing for an audience as well as that I wanted to raise awareness of life with mental illness and to increase understanding and tolerance.

So far, so ok. I have blogged as often as I can but not as often as I’d like. As well as the mental illness and the pain and fatigue of the AS I also have a reduced immune system thanks to a couple of the drugs that I’m on for my arthritis. As a result of this I am more likely to pick up infections and, once I have them, struggle to fight them off. This weekend was no different.

I had an infection, I felt rotten all weekend, my sleep pattern was all over the place and so was my blogging. Blogging with physical or mental health issues is always a struggle, with both it’s even more of a challenge.

Physical disability and blogging:

As a result of my AS I spend a great deal of time struggling with pain, fatigue, mobility issues, restricted movement and, as I mentioned, a reduced immune system. My pain levels have a huge effect on my productivity. When it’s at its worst the best thing I can do is crawl into bed and lay flat on my back (AS effects my spine as well as knees and hands). When the pain is more manageable I can do a lot more but there is a tendency then to over-do it which can effect my levels of pain and fatigue. Pain can make even something as simple as sitting on the sofa to use my laptop a next to impossible task. A lot of the pain I get is at the base of my spine so as you can imagine, when pain flares up, sitting is a challenge.

The best thing I can do is balance activity but in that planning, include a great deal of flexibility. It’s important to make allowances for yourself when you’re living with chronic pain or any chronic illness for that matter (physical or mental). The other thing to do is to schedule in activities for times when you know that you will be feeling at your best (for example, an hour after taking pain meds) and rest periods for times when you will feel less good.

Fatigue:

Fatigue is another challenging part of having AS. AS causes fatigue for two main reasons, levels of pain tire out the body and disease activity can exhaust it too. Fatigue is so frustrating. I’ve experienced it as a result of physical and mental illness and personally I think that having fatigue due to a physical illness is more frustrating (although it’s a close run thing), this is because you have all the mental energy and focus to do things but your body can’t keep up with it.

Ways of managing fatigue are similar to those of managing pain but the most important piece of advice I can give is to never feel ashamed of needing to nap. In fact scheduling in naps in between periods of activity, is probably a good idea. When I’m struggling with fatigue I feel sheer exhaustion and my concentration can be affected as a result, including blogging. The important thing to remember is to not beat yourself up because of the symptoms of an illness (any illness) that you didn’t choose to have.

Mobility issues:

Mobility issues may not seem to be something that could have an effect on blogging, especially for someone who owns a laptop, but things aren’t always that straightforward. As a blogger, there are things that I would like to do that involve leaving the house, for example interviewing people, for my fashion blog getting out and about taking photos of stylish people in public, for my beauty blog attending events such as a new make-up launch as well as attending blogger meet-ups and conferences. I often feel like I’m missing out because my mobility is limited meaning that I’m on crutches, can’t travel far without assistance and get tired easily.

Some solutions to the problems I have as a result of my mobility problems are pretty obvious, others less so. I can interview people by phone or email and I can get involved with online blogger chats. The thing is though, sometimes you can’t beat meeting people face-to-face and I crave that often. I have access to a PA and taxis for meet-ups closer-to-home but as someone who doesn’t live in a big city these are few and far between. It would be so nice to meet people face-to-face and bounce ideas off each other. On the positive side though, I am very grateful to my online community for providing me with support, encouragement and a feeling of belonging when I would otherwise have felt very much alone. I haven’t been disabled all of my life so I can still remember what it was like to have an active social life (not that you can’t have an active social life with a disability-I just happen to find it much more of a challenge). The internet is a real gift for people who struggle to get out as a result of ill health.

Restricted movement:

Having restricted movement links back to the previous two issues fatigue and mobility problems. I can’t get around easily because of my disability and also have to be careful not to sit in the same position for too long either or the pain will kick in. If I use my hands for too long (writing or typing especially) they can start to hurt or feel swollen. The best thing I can do is to take regular breaks and try not to beat myself up when I have to stop because of pain.

Low immune system:

My low immune system is a real nuisance. The average person with a cold or virus can manage to soldier on, however much of a struggle it may be but when you have a low immune system it really takes everything out of you to fight something like that off. The best thing I can do when I’m like that is to do the little that I can cope with and get the much needed rest that I need.

Mental illness and blogging:

As a result of mental illness I struggle with fatigue, anxiety, paranoia, depression, mania as well as suicidal thoughts or behaviour.

It’s even harder to blog with mental fatigue as it feels like you have complete brain fog. Any mental effort results in such extreme tiredness that the smallest tasks can take all day. All you can do during times like that is have patience with yourself and try not to beat yourself up (however easy it can be to do). Again balancing activity with rest and picking your best times of day to do those things that are the most mentally draining. The other thing is to stop comparing your ill self to you when you are healthy or manic. I’ve done this so many times and it simply achieves nothing. It doesn’t help you to work any faster and the negative mental energy you spend on telling yourself how rubbish you are could be better spent focusing on the task at hand or having some much needed relaxation time.

Anxiety is a hard one to deal with too. Anxiety can place similar barriers around you to that of someone with physical mobility issues. You often isolate yourself, struggle to go to new places or meet new people. As well as that it can affect your energy levels (panic attacks are incredibly draining) and a fear of criticism could mean that your writing never gets to see the light of day. As far as anxiety is concerned, small steady steps are what work best. There is even a type of therapy that suggests this: gradual exposure therapy when you confront your fears gradually by starting with the challenge that scares you least and gradually upping the fear factor. The other thing I recommend is trying to be as honest as you possibly can with people (easier said than done I know). Not everyone will understand but it beats people simply thinking that you don’t want to spend time with them. Taking regular time out of your day to do things that relax or comfort you also helps.

Paranoia can work in some ways similar to anxiety in that it is all about fear. The problem is that while I suggested for anxiety being honest with people about your problem, the very people that you need to be honest with are often unreachable either because your paranoia is about them so you don’t trust them or you’ve confided in them but they either react badly or say the wrong thing or just don’t know how to help or what to say. The best things you can do in this situation is to firstly, find someone who you trust and who reacts well and confide in them, seek help from your mental health team if you can and educate family and friends about what helps and what doesn’t as well as tell-tale signs to look out for, when you’re well and feeling clear-headed.

Depression can lead to fatigue, anxiety, extreme negative thinking and in worst cases, suicidal thinking and behaviour (which I’ll talk about later). The best things I would recommend if you have depression is to seek help from a qualified medical professional as you may need counselling, medication, or in some cases support from the mental health team and/or hospitalisation. Try to find a loved one or friend that you can confide in and be as honest with them as you possibly can although that can be scary at times. Doing something nice for yourself each day is a big step forward, something as simple as a pampering bath can have a positive impact. Finally, don’t be afraid to reach out for professional help. The Samaritans are just one of many organisations who provide advice and guidance to people who need someone to talk to who can keep their issues confidential. http://www.samaritans.org/how-we-can-help-you/contact-us .

Mania can be just as terrifying as depression in some cases. That feeling of being out of control, engaging in risky behaviours, impulsivity, not being completely yourself. The best thing that you can do is seek help. Confide in a friend or family member and/or a health professional. When you’re well plan for periods of mania by setting out what you can do to help yourself and who you can contact. You might have lots of creative energy but find it difficult to focus on one task at a time. Try to spend time on calming activities like listening to a relaxing CD and if you don’t feel safe-tell someone!

Suicidal thoughts or behaviour:

Suicidal thoughts or behaviour is probably the hardest thing of all on this list. If you feel like this then please don’t put any expectations on yourself as far as blogging, only do it if it helps you to feel better. If you feel like this then please seek help or confide in someone. I’m really sorry that that’s the best I can come up with despite having felt like this many times. The only other thing that can help short-term is any kind of positive distraction. A favourite CD, TV programme or book, spending time with someone you love. But you will still need to seek help as you only have so much energy to distract yourself with in the day. Telling someone, although difficult is a positive step towards keeping yourself safe.

There are many similarities and differences between physical and mental health problems and their impact on blogging. People are generally more understanding and supportive of physical illness as it is something that they can see obviously and find easier to relate to. There is still so much stigma surrounding mental illness but also ignorance that younger people can have physical disabilities.

Physical and mental illness can also interlink and impact upon each other. Have you ever felt depressed because you had the flu? Anxious because of the pressure of a disability? In the same way have you ever felt that your mobility was restricted because of a mental illness?

Things to remember:

When blogging with a physical or mental health condition, or both, the important things to remember are regular rest, flexibility and be kind to yourself whilst not forgetting to seek help as soon as possible. Do you blog with a physical or mental health condition? How do you find it and what are your tips for keeping going? Please feel free to comment on this post, add me on Twitter @spursbythebeach or email brokenglassshimmers@hotmail.co.uk . If you like what you’ve read today, for more mental health posts on a regular basis (usually shorter than this) follow me. Thanks 🙂

The stability checklist: An overview

Whilst on a BEPCymru course on Bipolar disorder and strategies of how to cope with it, I first discovered the stability checklist. 

Each letter of STABILITY stands for an element to be aware of where Bipolar is concerned. So:

Sleep (make sure you get enough)

Treatments (Don’t miss taking the tablets)

Alcohol (Remember not to overdo it and Avoid recreational drugs

Be positive (There is lots you can do to keep well)

Illness (Get help sooner not later)

Lifestyle (Follow a regular routine)

Inform (Yourself and your family about Bipolar disorder)

Triggers (What makes you more likely to relapse?)

You ( Can take control of your illness)

 

On a regular basis I am going to pick one aspect of the checklist to discuss and think about. This way I become better aware of how I can help myself and hopefully in the process pass on what I’ve learnt to others. What do you think of the Stability checklist? Do you think it could help you to understand and treat your illness better? Feel free to leave comments. I look forward to hearing from you.