What would help? What can we do?

Sadly over the past week I have become hugely anxious and paranoid and this is really starting to affect me a lot and is very debilitating. 

I have been so well for a long time and whilst I know it was unlikely to last for ever I am terrified that this anxiety might lead to an episode of depression and/or hypomania. 

I have already been to the doctors and started to put good support in place which has led to a medication increase which is helping with some of the symptoms.

I have also had so many offers of support and help and I am so grateful for these but I sometimes worry that I can’t always tell people what would be helpful or if there is something specific they can do. Sometimes the very simple things like a text or a chat over a cup of tea are enormously helpful and it is those spontaneous gestures that seem to have the greatest effect for me in combating the paranoia and very low self esteem.  I worry that people will think I am mucking people about or being a bit difficult when I don’t know what might help or what someone could do for me. 

In fact at this precise moment I am actually unsure what I really need or what could help as I am either still in a bit of denial that I feel unwell or just fighting all the thoughts going round my head so much that nothing makes much sense.

So to all those amazing people that try daily to help me and countless others with a mental illness – thank you. Please stick with us and apologies that sometimes I might appear vague about what would help the most, I am hugely grateful and just by being there you are helping so much.

What’s in a diagnosis ….

Healthcare is full of them! However the more I chat with people who experience mental illness the more I see a disparity between giving a mental health diagnosis and a physical health one.

Whilst I appreciate that mental health is often difficult to diagnose and I recognise all the challenges that could come up I still think that some professionals are not taking the diagnosis of a patient seriously enough.

This seems to be a particular issue with people who have been diagnosed with bipolar but then because they don’t respond in the way that professionals expect or have strong opinions regarding their care they are then seen as difficult and sometimes without consultation their diagnosis is changed.  What makes this worse is that whilst it would be rare for a physical diagnosis not to be discussed with the patient or next of kin, I have lost count how many people I know have found out about a new diagnosis by letter or by seeing it on a computer screen at the GP surgery!  

It is so sad how some professionals can’t accept that a mental health diagnosis does not mean that people can’t be or aren’t capable of being fully involved in their care plan.  

The anxiety of this kind of surprise misdiagnosis stays with people long after the situation is rectified (which can take months or even years).  I still cautiously scan the GP screen to ensure the correct diagnosis is showing and every appointment with each professional adds to my anxiety because of past experience. 

I am well aware that this is not a practice that all mental professionals follow however I hope that those that do this realise the implications of their actions and those that sensitively discuss diagnosis after a full assessment encourage good practice with their colleagues.

This is an important step in ensuring parity of esteem between physical and mental health and one which could benefit the mental health of so many people. 

Coping with a 45+ hour working week…

Yesterday I decided to take some medication as part of how I am coping with a huge increase in stress and workload.

I think that I am coping pretty well and taking steps to manage this which include being pretty honest that it isn’t always a walk in the park.

Working in education in September is always busy and with an added audit means that everyone is under so much pressure, but with bipolar I have to ensure that I take good care of myself through this very busy time.

My steps to managing during this time are:

Ensure I have one break away from my desk each day – I have managed this most days this week but on the one day I didn’t, I felt my paranoia and anxiety increase. Yesterday a very good friend came and met me for lunch and next week I am already planning in breaks so they are harder to get out of.  It isn’t always easy and in the past some colleagues have been known to say ‘we are too busy to take a break’, but my health must come first, I am already working overtime and one break can help me and makes a big difference.

Make an appointment with GP or other care professional – I have all my care provided through my GP who I see monthly or every two months or more often when I am unwell. Even though I was very well when I last saw her a month ago I knew I had a busy time coming up so I made an appointment for a month so therefore I am seeing her this week. This not only reassures me but also those that care for me that a professional is keeping an eye on me.

Take PRN medication – In the past I very rarely took any medication to help with anxiety or other symptoms until I had experienced pretty bad symptoms. Whilst I feel pretty well I have also had some quite bad anxiety, especially this week and have already taken medication that the Dr has prescribed for such times. I now know that there is nothing wrong with this, I am not weaker for doing so but actually sensible and strong for acknowledging the little bit of extra help I do need.

Talking with managers/colleagues (where appropriate) – This isn’t always easy or possible and I have experienced appalling stigma in the past however I am hugely fortunate to have excellent managers at the moment who not only keep an eye out for staff but will ensure I am looking out for myself. As they said to me this week, they want me at work as they value me, if that means having the full lunch break that I am entitled too that is more than fine! I also manage staff myself so being honest with them and supporting them through this frantic time helps me as well and means that as a team we are more productive in the long run.

Find time for rest & fun – in addition to a huge workload last weekend I took my Brownies away for a 3 night holiday which was brilliant but also meant that my weekend had very little room for rest. This weekend I am enforcing quite a bit of rest on myself starting with a lie in today, plenty of tea breaks and nothing at all stressful to do either! Whilst there is a temptation to work I won’t as I need to have a complete break as next week and probably the rest of the month will be as busy. 

So working isn’t always easy and I have to be so careful, but I am coping very well and although taking a day at a time isn’t always possible I am managing to stay well and do a good job.  Maybe I am also challenging the stigma surrounding mental illness without even realising it! 

Where have I been?…

So after a long break from Twitter and from my blog I am back! 

There are lots of reasons why I decided to have a break but I think I made the right decision and I am proud of myself for making a few changes (both on and off line) that I hope will keep me well for longer and also help me to see the positives that I am experiencing as well.

Twitter is an amazing source of support, however I got a bit worried a month or so ago that it might of been fuelling my paranoia.  I don’t for one minute think that it was the sole cause but it was something that I was aware of and therefore that I could quite easily do something about. Other aspects of my paranoia aren’t always so easy to sort.

I also found myself getting quite upset about stigma on Twitter.  I started to take personally stigmatising comments and at times became anxious when I read certain tweets.  This wasn’t healthy and so therefore a break enabled me to realise that I couldn’t solve the problem myself and eradicate mental health stigma.  It also helped me to realise that I can do just as much in my life at Church, at work and within my own circle of friends and family to start changing the way people view mental health without challenging every reference on Twitter.  

I have also been incredibly busy (with very positive things) and I am slowly getting used to the fact that I am not 100% well but that is ok (ish). I have started swimming and eating much more healthily which is also having a positive impact on my life. I am still having the occasional day when I resent being ‘not quite well’ – where the anxiety prevents me from doing what I really want to do or the sleepness nights trigger a negative spiral of thoughts and I feel that I am going to become very unwell and therefore walk on eggshells for the next few days.

I am pretty realistic about the fact that I will be unwell again in the future but the period since my last serious depressive episode has been different. I am acknowledging my vulnerability but staying more positive than before. I am coping and whilst some days are better than others I am moving in the right direction.

Thanks for sticking with me! 

Out of the blue …..

Just a short blog to put down in words how hard it is when what I might refer to as ‘Early Warning Signs’ or difficult feelings/symptoms hit me out of the blue.  

Today I had to stay in my car and was unable to drive off as totally overcome by emotion, just cried for no apparent reason and this was hugely unsettling. When I am depressed this is sometimes expected but when I am feeling quite well it hits me hard and seems to knock me for six.

Earlier today I also had a mild panic attack which I could probably put down to having 3 meetings in a row at work and feeling under pressure (or thinking I was under pressure) but I wasn’t expecting it.  

Subsequently I now feel very fragile, like I am walking a tightrope and not sure whether I might fall off or not. I am sure this is just a small wobble but what I do know tonight and trying to hang on to is that I am feeling positive enough to have quite a bit of hope which is good.

So for the rest of this Mental Health Awareness week (#MHAW15) and in the weeks to come (as awareness us good all the time!) I am hoping that I can continue to raise awareness, have positive conversations and not experience too many more days like today! 

Fighting the #Stigma battle

Maybe triggering – please take care…

Last night saw the inspirational, sensitive and excellent documentary aired on Channel 4 – ‘Stranger on the Bridge’. It told the story of how Jonny Benjamin, after a huge hunt found the stranger who helped him on Waterloo Bridge one morning when he planned to take his own life.  

I would recommend people watching this if they haven’t already as it was brilliantly put together and as someone who has lost a friend to suicide and have been suicidal myself I found it very helpful.  It was though very moving and could also be hugely triggering so please take care if you are fragile at present.

I thought that the whole story gave a very powerful message in the fight against Mental Health Stigma.  This is something that is very close to my heart and when I am well I do my best to talk about mental health and try and break down some of the misconceptions and challenge stigma that I come across in my day to day life.  Normally the stigma which I challenge is amongst people I have met before and more about helping people to realise that talking about mental health is ok and can be so positive for all concerned.  

One thing I have tried not to do is challenge the huge ‘celebrity’ (I use this term loosely) voices that seem to take great delight in doing whatever they can to damage those with mental health illnesses further.  I am acutely aware that these people thrive and feed on publicity of any kind and probably sadly make their money by causing hurt and upset to many vulnerable people. I was though angered by a certain tweet regarding the ‘Stranger on the Bridge’ programme and felt I needed to challenge this.  

I decided to tweet a reply but to an employer of the person concerned and whilst this hasn’t had a huge impact an online paper did write an article on the subject and quoted my tweet in their article.  This made me sit up and think and remind me that we do have a voice even when others seem to do what they can to destroy this. 

So today I have talked to others about suicidal thoughts, explained what this is like for me and let more people in to some quite difficult experiences from my past.  In return I have felt comforted by the responses I received and buoyed by people’s understanding and in some cases a change of view point.  

It also made me realise that the simplest of acts can sometimes have the biggest impact – just like the stranger on that bridge……

Online Counselling – My story

Nearly two months ago I was pretty desperate and had been waiting 3 weeks for an appointment with the community mental health team (CMHT) after my GP had urgently referred me but I had heard nothing. I was very unwell and felt that my thoughts and feelings were building up like a pressure cooker waiting to explode. I really didn’t know where or who to turn to.  I am lucky as I have very supportive family and friends but it isn’t always easy to tell them my darkest thoughts and when I am in the depths of depression feeling a burden to them is always uppermost in my mind.

I was getting to the point where I knew I needed to get some professional help myself as not only did I need an outlet for my thoughts whilst in this crisis I also wanted to build on my ‘Wellness Toolbook’ for the future. I am lucky that through Twitter and my blog I have met some amazing people who not only offer empathy and support but also have a vast amount of knowledge at their disposal. One such person asked if I had heard of Online Counselling and recommended an organisation to me.  I was immediately interested and went about finding out more information.

The first thing that sprung to mind was the accreditation it had and whether the site was reputable and so I was pleased to see that it carried the logo for the British Association of Counselling and Psychotherapy. I spoke with my family and friends who were sceptical at first but after I spoke to my GP who was very positive I decided to give it a go.  I was impressed by the website, security features and also the options available for counselling which include Skype and Instant Messaging. 

I went about carefully choosing a counsellor and then had an introductory session which was very useful.  I opted for Instant Messaging mainly because the anonymity that it provided at a time when I was hugely anxious was reassuring. I was also very frightened of seeing someone face to face as was feeling completely let down by mental health services and worried that the anxiety caused by meeting a new professional for the first time might be too much for me so this sounded a good option. 

I didn’t want this to replace the CMHT appointment that I think I need and am entitled to ( I am still waiting nearly 3 months on) but I also couldn’t sit back and do nothing when I am so determined to help myself where I can. I wonder whether for some people ( and I realise this wouldn’t be a viable option for everyone) this could be offered on the NHS? I don’t for one moment suggest that it should replace services already on offer but with waiting lists so long this could be a huge lifeline to some people experiencing mental health problems. 

I would also add that I am paying for this treatment myself and well aware that I am in a fortunate position to be able to do so.  Many others I’m sure, would like to pay for treatment themselves due to the lack of NHS services and the long waiting lists but obviously could not afford to. 

This is my first blog on the subject and I hope to be able to help raise the profile of online counselling and the huge benefits for people like myself. 

A very positive few days…..but

After returning to work full time this week I knew that it would be a sort of test for me to see how I really was coping and feeling. I have been feeling much better for a week or so and after 2 months of pretty desperate times it has been a huge relief. The last couple of weeks I have had quite a bit of annual leave and also not been working full days so I knew this week was a different challenge of sorts. 

Work has gone well this week and I have coped ok with quite a busy time and also managed to get the balance right so that I am taking things gently when I can. I feel back in control, able to make decisions and even have snippets of feeling positive about my own abilities! I can’t say that I haven’t once felt depressed or that the anxiety hasn’t at times felt like it was taking over but these feelings are no way near what they were.

Tonight though I experienced the dreaded feelings of worrying about getting ill again.  They sort of came in a huge wave of emotion and made me realise just how fragile I am and also how frightened I am of feeling how I did just 2 weeks ago.  It is hard for me to separate what is ‘normal’ emotion about a very sad situation and when I should be concerned that I might be getting ill.  Before I know where I am I feel anxious, very upset and just want to hide away and stay in bed. Ok this didn’t last long but I am left with the worry that wasn’t there this morning and hoping it will be better when I wake in the morning. 

Revisiting my #WRAP 

I have wanted to revisit my Wellness Recovery Action Plan (WRAP) for a while but as I have spent the best part of the last 2 months being quite unwell it wasn’t really a good time. I wonder if now is even too soon as I have only had 4 better days and maybe it is too early to look at how I can do my best to stay well in the future but I feel I need to do this.  

I use a fairly standard WRAP format and one which I have worked hard with my GP to put together. This WRAP includes both depressive and hypomanic symptoms due to my Bipolar diagnosis.

To start with I looked at my ‘Wellness Tools’ (Activities I enjoy or that help me feel better) which include:

Spending time with husband & family, Talking to Friends/Socialising, Mindfulness, Going to Church, Keeping a routine including going to work, Using my light box, Reading, Singing, Watching things on TV I enjoy, Listening to radio and music, Doing things I know I can do, Write a blog, Chat on Twitter, Online Counselling, Taking small amounts of medication to help anxiety symptoms, Monitor my sleep & use small PRN if needed even when well.

Closely linked to these is the ‘Daily Maintenance’ (Things I should try and do everyday) which include:

Keeping a routine, Eating 3 meals a day, Getting some rest, Taking regular breaks at work, Resting at home everyday, Reading for 1/2 hour everyday, Have a shower, Do something I enjoy, Keep my mind active, Mindfulness, Get out of bed everyday 

It is then important to identify ‘Triggers’ which for me are:

Tiredness, Emotional events, Seeing people that may of caused me distress in the past, Skipping meals, Too much stress at work, Spending too much time alone. 

I also need to remind myself that sometimes I can become unwell without experiencing any of these triggers. 

If any of these triggers occur and do affect me negatively or I think they might I try and implement a ‘Triggers Action Plan’ which is:

To try and stick to my daily maintenance plan, Call someone on my support list, Practice mindfulness, Remembering it is ok to care for myself.

‘Early Warning Signs’ are probably fairly crucial for me as it is knowing when to recognise them but not to panic about them before they arrive. For me these are:

Not sleeping more than about 4 hours per night, Slight paranoia, Anxiety in certain situations, Becoming very low, Spending too much money, Racing thoughts, Slight Hypomania, Not enjoying things.

If I notice these signs I then try and implement an action plan based on these which is now going to include calling my GP at this stage.  

I did call my GP when I became unwell in February and noticed the Early warning signs. This did help me feel more supported and also enabled my GP to refer me to CMHT – the fact I am still waiting for an appointment 2 months on is awful but if CMHT can get their act together GP intervention at this point is crucial. The other important things in the Early Warning Action Plan are asking for some help from support list to implement daily maintenance plan, Ask people for help and support, Try to have company where possible, Start using PRN – probably promethazine, Talking worries through with people.

When things are getting worse I will often notice some or all of the following symptoms:

Experiencing Depression all of the time instead of it coming and going, Wanting to sleep all day but not able to sleep at night, Anxiety getting worse & shaking some of the time, Not eating at all without prompting, Having thoughts of suicide, Hearing or seeing things that others can’t, Paranoia so bad that I can’t leave the house easily.

If these signs are present then again I try and implement an action plan: 

Call GP and update her that I am in crisis, Try and ensure I am not on my own, Talk with people who are able to offer support, Think about taking Diazepam to control symptoms, Talk to work about implementing flexible working and other reasonable adjustments, Discuss with someone about attending A&E as a last resort but ask for help from support network to do so,  Ask for support in monitoring PRN so that I am safe, Identifying where on the scale my suicidal thoughts are. 

This is obviously my own plan and is what works for me. I find it helpful to carry my WRAP & care plan from the GP with me to show to other professionals I might meet. This WRAP helps me to feel more in control which I find really important. I constantly re-visit this WRAP and share its contents with those involved in my care. It has also proved useful at work to ensure I am supported correctly.

When I do finally receive a CMHT appointment I will ensure that this WRAP is my starting point for discussions with them. I need their input to work with this plan so that hopefully earlier intervention can lessen the time I am unwell and the need to attend A&E. 

So I went to A&E & saw the most amazing nurse … a fairly positive visit…

As during previous mental health crisis’ I made the difficult decision to go to the local Accident and Emergency department yesterday. It seems pretty ridiculous that this is the only way for me to access crisis support when experiencing a bipolar episode but sometimes I can’t see any other way. I had also waited nearly 2 months after my GP refered me urgently in early February and I had experienced the toughest weekend.

We decided that yesterday morning might be a sensible time to go but it doesn’t take away the huge anxiety that is associated with that place and also reminds me every time of the most horrendous recent experiences that I have had there.

On arrival there is now a process of ‘streaming’ to ensure that people are directed to the relevant department. One thing that I immediately noticed here was that the ‘streaming’ nurse didn’t say hello or introduce herself.  It is a shame that one of the large London hospital trusts (not the mental health trust) haven’t signed up to ‘hello my name is….’ or if they have that staff aren’t using it which is a shame especially for those facing patients walking through the door.

She spent less than a minute with me, just writing down my surname, date of birth and handing me a piece of paper to take to the main desk. After checking in we waited in a slowly filling up waiting area which I would find anxiety provoking at the best of times for about an hour before seeing the accident and emergency triage. The nurse here was actually supportive and explained that the mental health nurses would be contacted from the other trust to come and see me. She was slightly more friendly than the ‘streaming’ nurse but did have that ‘lets get you out quick’ approach! 

We then waited for what normally is an eternity to see the mental health team. After only half an hour we were pleasantly surprised when a nurse appeared and as we were walking to a consultation room she greeted us warmly, introduced herself and another nurse and was just amazing from the moment we met her.  As usual though she had been given a totally inappropriate room to conduct her assessment in – it had a bed and 1 chair. My friend and I decided to help them out and sit on the bed and they managed to beg a chair from the hospital staff (another problem of having to go to another trust to see mental health staff). 

Once sorted in this rather strange room I was immediately reassured by the mental health nurse and given my currently state that is some achievement. Instead of going through a laborious checklist assessment she talked freely with me and completed different parts of the assessment as she went.  This approach immediately puts me at ease and staff concerned get a much better overview of where I am at the moment instead of just concentrating on receiving one or two word answers to sometimes irrelevant questions.  The other member of staff made notes and asked a few questions which weren’t at all helpful but probably she felt she had to ask something! The senior staff nurse not only grasped quickly the severity of my crisis but also grasped the type of support I so desperately need. She didn’t appear shocked and at every opportunity reassured me and treated me like a fellow human being.  

After about 40 mins she left to speak to a doctor and when she returned she explained that unfortunately the crisis team or home treatment team that it is sometimes called had no capacity.  She had though noticed that I had a Liason Intake Assessment (LIT) on Friday and was pretty sure that they would refer me to the Short Term Intervention team (SIT) so she was able to do that for me there and then and therefore I wouldn’t need to go to the probably rather pointless LIT appointment on Friday. 

I am now waiting for the SIT team to contact me and hoping they do very soon as it is a little frustrating to go through the accident and emergency process only to be still without the support I so desperately need. I am hugely grateful to the nurse who saw me yesterday and proud to be a governor for the trust where she works and impressed that they and obviously she are using ‘Hello my name is ….’. I just hope this isn’t a one off and that the system is slowly improving and that the people I will see during the next few days and weeks will be as equally supportive and professional.