Real life experience 1
Firstly, I would like to say how grateful I am to the NHS, in particular, for the commitment and compassion of the staff in the field of mental health.
Since my diagnosis, which took a little time to establish in the early 1990’s, I have led a relatively good life. I served in the Parachute Regiment of the Army as a junior soldier before taking over the reins of our family business from my father who passed away at just 49 years old.
So at just 19 years of age, I was exposed to a great deal of stress as we maintained the business and even opened a new branch in York. Following this I spent a couple of years selling cars. Although lucrative it was a little boring waiting for people to come to the showroom!
Following the first breakdown I was prescribed Lithium, which along with some other factors, helped keep me stable. Unfortunately in August 2011 I was sectioned and the medical staff agreed that lithium was no longer having the stabilising effect on me that it once did. I had been taking it for some 16 years. Also, blood tests were indicating that my liver function was starting to be affected. So they listened to my wife and I, and it was agreed that I should change my medication, moving over from Lithium to Depakote, along with Olanzapine.
Then in 2017 to try and prolong the episodes of being up or down, it was agreed that I would try Quetiapine alongside the Depakote, which had successfully proved to work for my twin brother Mark – who also interestingly had also been diagnosed with Bipolar disorder.
Initially, until the optimum dosage was established and my body got used to the new medication, I still experienced minor mood swings, but these gradually diminished. I’m confident now that we have settled on the correct dosage and I have felt stable and well for over 4 months. In both of these medication changes my wife Shirley and I felt in full control of these decisions with excellent medical input.
For me, there are at least three key people who listen and help me to understand how I can successfully manage Bipolar. Firstly my wife Shirley; we have been married 25 years this year and her support and care for me over the years has been amazing. We can both recognise the early signs of becoming unwell. When facing a possible manic episode you can’t always see this for yourself, as you feel really well, so it’s critical for me to respect Shirley’s view on how I am. This leads me on to the next person who I value highly and that’s my Community Psychiatric Nurse. I’ve had the same guy for over two years and he is a great support and understands me well. Continuity makes a real difference. He has helped me recognise the signature or pattern my condition portrays and enables me to take early action to avoid a relapse. The third person, who offers me a reassurance and understanding of Bipolar, is my Consultant Psychiatrist, who in conjunction with my CPN offers further insight particularly with regard to medication.
Regarding negative experiences, I suppose one comes from when I have had to stay in hospital. Because you are mixed with all sorts of people, suffering all sorts of conditions, it’s a very difficult environment to recover in. One minute you may be talking to someone who is recovering from substance abuse and the next minute you may be speaking to someone battling depression. In that chaotic environment, sometimes it’s difficult to communicate how you are feeling to staff, and you may feel you are not being listened to.
Mental health seems to be climbing the agenda and is being spoken about much more openly than ever before, however I think there is a lot of work to do to recognise its effect on people’s lives and how it can be overcome and managed.
In my role as a Trustee at my local Mind, I was invited to visit Westminster and had the privilege to share with MP’s my experience of living with a long term mental health condition, and they seemed to listen. This caught me by surprise! On the whole, I have a lot more positive experiences than negative ones. In July 2017 I became a Grandad for the first time with the birth of my grandson. My daughter also gave birth to our equally gorgeous baby granddaughter recently. Life can be so rewarding when you consider how blessed we are as a family.
Life can also be a little tough with bipolar, but with the help of my family, my Christian Faith, and all my mental health team, I’m looking forward very positively to the next few months, and dare I say it, years ahead.
Real life experience 2
Coming off medication is not a decision to be taken lightly and certainly is not right for everyone. Before making a decision to come off medication it is vital that you do your research and determine whether you feel it really is what you want to do. No one has the right to make that decision for you and both taking medication and coming off medication come with risks, it is about balancing those risks to achieve a life that you’re happy with. For me, coming to terms with my condition, reading about self-management techniques, symptoms and triggers, as well as developing my own self-awareness were vitally important to successfully reducing and coming off medication without having a negative effect on my mental health.
My advice to anyone who is considering coming of medication would be to hope for the best but prepare for the worst. What I mean by this is that you need to have a plan in place in case you react badly. I read a huge amount about what can happen when coming off medication and also about alternative ways of managing bi polar disorder such as exercise and relaxation techniques. I think it is very important that you have the support of those close to you, your friends, family, and professionals involved in your care and make sure they are aware of when they need to act to ensure your safety should you become unwell during this period of change.
I have a diagnosis of bipolar disorder and before coming off my medication I wrote a very detailed person care plan, detailing the types of things that people need to look out for and agreeing what should be done in the event that various scenarios should take place. The plan included detailing my known triggers, what types of behaviour I may exhibit if I were to head towards a depressive episode and the types of activities I should be encouraged to do to try and prevent this, but also the same for an episode of mania. I described how people should approach me if they were worried about my mental health, for example I stated that I would like people to give specific examples of what they concerned about, rather than just saying that they are worried to enable me to decide whether their concerns are justified. I made a plan with my psychiatrist about the rate and which I would reduce my medication and how often I would check in with professionals during this period. I made sure that both myself and my family were aware of who should be contacted if I were to become unwell at various points. I also made a plan for what I would like to happen should I need to be hospitalised again, who I would like to visit, who should be informed and at what point people should act on my behalf.
Many people tried to persuade me not to come off my medication, that it was too risky and that I should carry on the medication that had stabilised me, however I was very unhappy with the side effects of the medication and how it was impacting on my life. I felt that I had a much better understanding of myself having come to terms with my diagnosis and wanted to give myself a chance at managing my condition without the use of mood stabilisers and antipsychotics. I am not against medication and know that the time may come in the future when I will need to take medication again, however at the moment I have been medication free, and stable, managing my condition myself, for nearly three years. I am able to lead a normal life, unaffected by the side effects of medication and I can honestly say that coming off medication, for me, was the best decision I could have made.